Abigail Gaya

It's a GREAT Monday!!!

2010-08-23T10:17:00.001-07:00

Good morning Abby fans! It's Kelly here. First, let me apologize for not posting anything for a while. Choc took the laptop away from me the last three days that we were there. And this weekend...well....I was WAY TOO busy kissing, hugging, loving, tickling, laughing, and EATING with my family at home!!!!! Seriously....we had the BEST weekend ever and we didn't leave the house once!!! It has been so amazing just to be home together as a family again!!!! And EATING together as a family....all FIVE of us!!!

The last few days at the hospital were pretty good as far as Abby's meals went. And on Friday before we were discharged, we had a meeting with her feeding team. They told us that they all felt extremely confident that Abby will be a successful eater for the rest of her life! WOW!!! That was soooo awesome to hear!!! They told us to prepare and to expect some resistance and continued behavioral changes as she adjusts to her "new" life at home. But if we stayed the course and remained consistent that she would eventually be back to her old self. They expressed how important it was that we stick to the same eating schedule that we had been doing in the hospital for the next week or two. No vacations, no long outings, nothing that would get us off track. So pretty much we are home bound for a bit. But, like I already mentioned...that is TOTALLY fine with me!!!! Our home beats a tiny 10x14 hospital room any day!!!! So for the next week or two our schedule is as follows....

8:00 Breakfast
10:00 Snack
12:00 Lunch
3:00 Snack
6:00 Dinner
8:30 PM snack

Each snack/meal has to be sitting down at a table with her bum on a chair. We are allowed to go out to a restaurant or have a picnic at a park or the beach as long as she sits down on her bum on a towel or blanket. We tried it Friday night after we were discharged. (oh ya...so I guess we did leave the house once!) We went to BJ's pizzeria in Laguna Beach with my parents. She did great!!! And it was sooo nice to be out in the real world eating yummy food!!! Hospital cafeteria food for 3 weeks was almost torture!!!!

Since we have been home, Abby has been doing pretty well. She does great for the first 15 minutes and then the next 10 to 15 minutes can get pretty hairy. She is constantly up and out of her chair. Slow and steady, right?!!! We are working on it!!! Some times she'll throw us a curve ball and not want to eat at all. So we dig into the bag of tricks that her therapist taught us and we can usually get some kind of volume down her.

Ryan and I, NOW have the confidence that she CAN do this and do it well. And we also NOW have the confidence that we know how to support her in doing so. This program has been amazing. We have learned SOOOO much. And so much of what we learned can transfer over into other areas of parenting. It has been amazing. Really challenging, but amazing. We thank our Heavenly Father for answering the many hundreds of prayers that were said on our family's behalf over the last few weeks. We are so grateful for our Faith in Him. We are so grateful for the Faith that you all have in Him. We are so grateful for the power of prayer. And I am especially grateful to my Father in Heaven for my most AMAZING husband. He has been my rock for all of the ups and downs that we have experienced these last 9 years of marriage. He is the most selfless man I know. He ALWAYS puts us first. I love him more than I could ever put into words. He makes me so incredibly happy and he makes me feel so safe even in times of trial and hardship. I am soooo excited to spend the rest of my life with the man I am so privileged to call MY husband. I love you soooooo much Bubbs!!!!!!

We are definitely going to keep posting about Abby and her continued progress. And about how wonderful our life is without feeding tubes, syringes, feeding pumps, etc....WOW. I still can't believe it!!!! We are sooooo excited and feel sooooo blessed that we are over the hump!!!! This hump anyway!!! I'm sure there will be more to come!!! :o) But for now, we will enjoy the calm in the sea....

With all our love,

Kelly and fam XOXOXOX!!!!

Dinner last night was better...

2010-08-17T11:27:00.000-07:00

Hi all,

It's Ryan. I just wanted to put up a quick post to let you all know that Abby finally pooped yesterday afternoon....3 times! Thank Goodness. It seemed to help too. Kelly and I took Abby outside to the cafeteria patio for dinner and she did great. She ate a lot of her pasta and had some bean and cheese burrito too. She didn't get out of her chair or anything for the first 25 minutes or so and when she did get out, it wasn't that hard to get her to sit down again.

As Kelly mentioned before, the third week is the week where the therapists turn the reins over to the parents and let us feed Abby. In fact, the room where we feed Abby has a mirror in it that is actually one of those one way window mirrors and the therapists are in behind it in another room watching us but Abby doesn't know they're there. This way, the therapists can really get a good idea as to how Abby acts with just us. This morning was my turn to be the primary feeder for breakfast. And true to form, Abby was pretty defiant as far as getting up and scooting her chair back. The good part was that she did eat pretty well though. She had a good amount of pancake and cheerios and drank a fair amount of her milk. I'm certainly learning all the tricks too! Remember, we can't say anything negative to Abby. We have to keep all of our comments positive and just redirect her attention. So when she was arching her back and getting out of hand, the therapist recommended I make happy faces out of the cheerios and have her eat the face up. She loved this and it totally stopped her from acting out! That's just one of many many tricks the therapists have up their sleeves to redirect Abby's attention. This week is all about putting mommy and daddy in the hot seat to make sure we know those tricks. Mommy of course is all over it. She has it down already. I certainly have a ways to go though! Let me tell you guys, when Kelly says that it's been a rough feeding day and all that, she means it. Abby is one feisty little girl and she can really throw down some big time tantrums. The fact that Kelly can keep her cool and keep everything positive and use these redirecting techniques just blows me away. You need to see her in action. It's amazing. And sure enough...it works! It may take 30 minutes to get 5 bites into Abby's mouth, but Kelly does it. She goes the distance with Abby and that is the key. If we get Abby to agree to taking 5 more bites before the meal is over, then we have to be prepared to do what it takes to get her to take those 5 more bites. Otherwise she'll learn that if she just holds out long enough, mommy and daddy will give up. And since she is a stubborn stubborn STUBBORN little thing....this becomes quite the challenge. Like I said though, Kelly makes it happen and as a result, Abby is learning that she is going to have to take those bites no matter what.

So there it is friends. I hope lunch goes well today and I'll be back at 3PM for snack. I'll be in the hot seat again. Yikes!

We'll let you know how it all goes.

Love,

Daddy

5 more days....................

2010-08-15T19:48:00.000-07:00

It's Kelly here. I'm sorry that I haven't done an update in awhile. I finally got a laptop from CHOC again! YEA!!! It is awful with no computer access...especially in here where I have no connection to the outside world.....for two weeks now!!!! Holy Cow....this has been tough! But enough whining...lets get to business!

Abby had a great Thursday. She was taking 3-4 oz. of her milk or juice, every meal. (That is amazing for her!!!) And her food intake was great too! I was sooo happy! I finally was seeing the light! Then Friday happened. Her liquid volumes were ok, but her food intake was definitely down. I was feeling discouraged...where was that light I saw yesterday???

Friday night felt like Christmas Eve for me....I COULDN'T WAIT for Saturday, when I was going to be able to spend 4 hours OUT of this hospital AND spend it with MY ENTIRE FAMILY, TOGETHER!!!

Saturday morning, Abby had a great breakfast. Her ten o clock snack was terrible and her lunch was just ok. Then at 1:00 Ryan picked us up. YEA!!!! I was really nervous about how she would do for her first meal in the "real world".

We had decided to take the kids to a place called "Pretend City". Some of you may know what that is but for those who don't....it is a huge warehouse that is filled with a child size town. Complete with a kid size grocery store, (where they can shop and check out at a register) a post office, a doctors office, fire station, police station, a theatre...(an Abby and Eddie favorite...they loved to be on stage dancing for all to see!!! My shy children. HA!) There is a farm, a fishing port, a house complete with a huge kitchen to cook in, bedrooms and bathroom...and so much more. I think it was the best money that we have EVER spent! They absolutely loved it and so did we!!! My heart was the size of a watermelon as I watched my family laugh and play together!!!! It was heavenly for me!!!!! And Abby did absolutely AMAZING at snack time!!!!! At 3 o clock...we all sat down at the tables to eat. Mind you, these tables are right in the middle of all the action. It was super loud, with kids running everywhere. Super stimulating! And Abby sat down for 20 minutes straight, ate her snack, and drank her juice. Not one issue!!! It was the BEST meal/snack that she has had since we started this program two weeks ago!!! I was feeling sooo encouraged now!!! (I think a lot of it had to do with us not being in a quiet room, staring at her as she attempts to chew, eat and swallow the food we ask her to. It wasn't so controlled.) It was an absolute perfect day!!! When Ryan dropped us back off at the hospital it was all I could do to not completely fall apart. It was soooo hard walking back in those hospital front doors.

Today.....(Sunday), I woke up feeling like it was Christmas morning!!! Only breakfast and snack and then we were off to Newport Beach!!!! I was soooo excited!!! THEN...we had breakfast. It was a TOTAL train wreck. She wouldn't sit in her chair, she didn't want to eat...fought me on everything! Once again, I was feeling super discouraged. Snack was NO better!!! But then Ryan picked us up at 11 and we were off! YEA!!! We went to Rubys on the pier to eat lunch. I read Abby all the choices she had to pick from on the menu (something our therapist told us to do) and then asked what she would like. Without hesitation she answered, "macaroni and cheese with french fries and ranch". Perfect! Full of carbs and calories!!! That's what our girl needs!!! So I was feeling good about things at this point. Well, then the food came and she took two bites of the macaroni and one bite of fry, some juice and said she was done. She was up and out of her chair more times than I can count. It was NOT pretty. I was sooo bummed. After lunch we set up shop at the beach. We had "snack time" on a towel and she actually did pretty darn good. I was feeling a little better. We had an awesome day together. And my heart ached again as we walked back into the hospital.

And tonight...oh boy, tonight's dinner was probably the worst meal we have had yet. Again, she fought me on everything. She is up every two seconds, spitting her food out...she just doesn't seen to be hungry. (On a side note, she hasn't pooped in a couple of days, so I am praying that she might be feeling constipated and maybe it is affecting her appetite. We are giving her something tonight to help with that problem.)

Anyways, the past few days have been a total roller coaster ride of emotions. Up and down, up and down. Only 5 more days....I can't tell you how excited I am to get out of here and be home with my whole family again, but I am also scared to leave. Right now, I see no light again. Where is it????!!!!! This HAS to work!!! Her docs and therapist had told us that this third week is really where things fall into place. I am PRAYING my heart out that this is the case with Abby.

I am very anxious to talk to the team tomorrow...weekends are hard when there is no direct support from anyone on her feeding team. I will keep you posted as long as I have a laptop to do so.

Thank you soooo much for all of your love, prayers, phone calls, emails, texts and messages. They are what have helped me to stay positive and upbeat thru this. We feel sooo blessed to have such an amazing support system. We are truly grateful. THANK YOU!!!!

Love you....

Kelly

A rough start but looking better now...

2010-08-12T09:56:00.000-07:00

What's happenin' Abby Lovers,

It's daddy here. Kelly extends her apologies on the delay of this update and the pics that were promised. CHOC had given her a laptop to use but they needed it back so she was left without any means of internet access.

Monday and Tuesday of this week were pretty difficult. Abby definitely hit that "wall" that the therapists said she would hit. She was just more defiant and not willing to sit in her chair and eat anything. Abby was also drinking a lot less and she started to to spit her food out again. The therapists said they weren't too worried and that this behavior was mostly just a control thing. What's this? Abby having a need to be in control? Naaaahhhh!!! Not OUR Abby! :-) Either way, Kelly and I were still concerned simply because it's Abby. Abby just doesn't do things "normally." So if kids in this program "normally" do this or "normally" do that....we don't plan on resting easy until Abby shows us that she is in the clear.

Wednesday was definitely this day. Well...perhaps we shouldn't go so far as to say she's in the clear but Kelly said it does look like she past the "hitting the wall" point and on the upswing. Wednesday was the day we switched Abby's milk products and she likes these much more. They are from a different manufacturer and she just really likes the way they taste. I've tasted them...they ARE good! She is also starting to do better with sitting down while she eats. The first 20 to 30 minutes are pretty good now and this morning she even sat calmly in her chair for a full 40 minutes!

This weekend Abby gets 2 "get out of jail free" cards! One for Saturday and one for Sunday. The therapists want us to take her to a restaurant where she can eat from a menu and see how she does in that atmosphere. I'm so anxious to see how she does! Kelly is anxious too, but more than anything, she is dying to get out of there! She literally hasn't left the CHOC campus in over a week. Her ADHD is kicking in and the already small hospital room (where they spend a lot of time) is getting smaller and smaller by the day. I truly don't know how she's doing it. She is MY hero.

Keep the prayers coming both for Abby's continued success and for Kelly's sanity. They are officially on the back side of this journey but still have 8 more days after today.

Thanks everyone. We love you!

Daddy

If Abby does well with a feeding, the therapists let her play! This one is her favorite. She goes down a slide into a big pool of balls!

Here she is in action!

Is she trying to tell us something here? :-)

And since many of you that are checking this blog don't live close by, here are some pics of the boys!

Eddie LOVES Jack! And Jack loves him back. I love watching them play together.

Here we are at Eddie's Birthday Bash at the Beach!

Some more beach pics....

Pics from Abby's End of the Year Party at School

Today is a better day....

2010-08-09T16:16:00.000-07:00

Well, today has been a much better day than yesterday. She hasn't "acted out" during meal times nearly as much. And of course she is 10 times better with a therapist than when she is having her meal or snack with just me! Her food volumes are pretty good, now we are really trying to up her volume of liquids.

This morning I was able to talk to the therapist about our experiences this weekend when it was just her and I all weekend long......

So I would say Abby's most favorite "trying to get out of this" tactic while she is eating with me in our room is her continually getting up and out of her chair. And so we are supposed to ask her in a numerous amount of ways to get her to sit back down. And when the verbal promptings don't work, we move to "Abby if you don't sit down by the time I count to three, then I am going to have to help you to sit down." This works a good amount of the time because she doesn't want me to help her with ANYTHING!!!! But sometimes, she doesn't get back in her chair by three and I have to physically pick her up and put her back in it. Sometimes 20-30 times a meal! PATIENCE!!!!! :o) But this weekend she took it much further and when I would pick her up to sit her back down she would arch her back and hold tight or she would go completely limp and when she did either one of those it was IMPOSSIBLE to get her in a sitting position on the chair.

And then there was the crying...big tears with a quiet long stare at me.....heartbreaking!!!!!!!

HELP!!!! What do I do???????

So her therapist told me that when it comes to the arching or going limp to just wait it out. Hold her for a minute or two, in whatever position she is fighting in, without saying anything. She said to make sure and not physically force it because that will make her fight more. And usually they will give in when they get no resistance or reaction out of you. And the crying....she said to just "take a break" for a few minutes. Redirect. Ask her if she would like to draw a picture or grab a book for us to read and then we will finish eating.

So at snack time today, just me and her, she did ok. She got out of her chair A LOT but no crying and no going limp. So I haven't had a chance to implement this new direction, but I'm sure she'll give me a chance to at some point. :o) Hopefully tonight will go well....

She did pretty good, volume wise for me and the therapists today. She is starting to get out of her chair more with the therapist too. Which is good so I can see how she reacts to them and their tactics......

On a more fun note...we had a little drama today! We had taken a little bicycle ride downstairs and we were on our way back up to our room. When the elevator door opened on the 5th floor for us to get out, I walked out first and by the time I turned around Abby hadn't made it out in time before the elevator closed!!!!! So in quite a panic, I ran to the nurses desk and there was Peggy, the life time specialist on Abby's feeding team. I told her what happened and she told me to stay on the 5th floor in case she made it back and she hopped on another elevator in search of her, all the while alerting security. I wasn't worried about Abby freaking out AT ALL!!! She loves strangers and new people...I was worried about them calling a code in the hospital and everyone going on lock down. Well, Abby had taken a ride up to the 6th floor and rode right out of the elevator on her little bicycle over to some nurses. They called security to let them know that they had found "this cute little girl on her bike". So THANKFULLY it happened so fast that a code wasn't announced. And by the time Peggy, I and a security guard got up there to get her, she was in the middle of 5 nurses, showing them her "bicycle tricks", absolutely loving all the attention!!!! She REALLY is making a name for herself here!!!!!!!!!!!!!!!!!

That's all for now...thank you once again for the prayers....clearly they are working!!!!

Much love,

Kelly

P.S. I promise there will be pictures tommorrow!

Holy Cow, this is getting really hard!!!!!

2010-08-08T13:47:00.000-07:00

Good afternoon Abby fans...please keep praying for us in here!!!! We are having a rough day!!!! Before I jump to today I am going to hopefully just sum up the basics of the program.

So, like I said in my previous post, its all about consistency. So if Abby decides she does not want to eat anymore of her meal and she says she's done and we say we have a few more bites, she sometimes will slide the rest of the food on the floor. Well for this reason, only a few bites are placed in front of her at a time. So when she "accidentally" spills, or slides, or throws them off the table, we tell her (calmly) that we are just going to get another bite to replace it. You HAVE to finish these 3 bites.....and sometimes it takes like 20 minutes for her to finish them....that is NO exaggeration!!! And they use all different kinds of techniques to help her finish. They introduce a book or a puzzle and let her turn a page once she takes a bite, or finishes chewing a bite, etc...they do a lot of redirecting. It's really about setting up expectations and teaching her that she needs to meet them.

So like I mentioned earlier, the first week is all about me observing and the therapist run the show as they get to know Abby, and what works for her. The second week they have me involved in the sessions and we co-treat. And the third week I do all the sessions while they sit back and observe, critique and encourage.

They also explained (and warned) us that the first week usually goes ok. The kids come in all excited, they are very willing to please. They like all the positive praise and cheering and so they for the most part will do what you ask even though it might take some time. Then around the second week mark they hit a wall. They are over it. They don't want to eat when and how much someone tells them to. (Remember that eating is hard for them...it's not a natural pleasure for them.) This is where the behavioral changes really start to take effect. Total defiance, screaming, crying, laying on the floor, tantrums....they said they have seen it all. But you keep going, pushing them and by the third week they have finally succumb to the fact that "ok, this is how it is, if I just do what they ask, finish this bite or take these last 5 sips of my drink, etc. then I am done and I get to get up and go play.

So every Friday afternoon, we meet with the entire feeding team and go over the week. And I am VERY HAPPY and PROUD to report that Abby had already hit 91% of her discharge goal. They wanted her to be eating/drinking around 1100 calories or so by the time she exits the program after three weeks and on her 5th day here, she was already at 91%!!!! They told us that they think she is eating more in the first week than any other kid they have ever had in the program!!!!!!!! WOW!!!!!!!!! THE POWER OF PRAYER......AMAZING!!!!! ( Thank you sooooo much for all of your prayers....clearly, they are working!!!!) But they also told us to not throw a party just yet. That we are still in the "honeymoon" stage and that next week might get ugly.

Well.....I think we are hitting our wall!!!!! This weekend she has been getting increasingly more difficult with every meal. More and more resistant to sitting in her chair, actually, she was arching out of her chair and wouldn't get off the floor. She is starting to throw her drink off the table followed by the food that is in front of her, spitting out her food, and this last meal at lunch, she actually started to cry. Big tears streaming down her face... she just looked at me with these big tears, her eyes saying to me, "mommy, I don't want to do this anymore...please don't make me, it's too hard.) Those tears almost broke my heart. Actually, as I am typing this right now, I have my own big tears streaming down my face. This is hard for her....really hard. This part I wasn't expecting....for this to be hard for MY heart. My sweet baby girl...she has fought so hard, for so long, for so many different things. Things that "normal" children take for granted. And now here I am, asking her to do it again. I know this is what she needs but this afternoon, knowing that, didn't make this ANY easier. I wasn't even sure how to handle the situation "correctly" because we haven't encountered this behavior with a therapist yet. All I wanted to do was scoop her up in my arms and say, ok baby...you don't have to, I love you...but I couldn't. IT WAS SOOO HARD!!!!!!!!!!!

So, PLEASE keep those prayers coming!!!! We could REALLY use them. I will of course keep you posted on the remaining meals for today and what the therapists have us do in these types of situations.....gosh, tommorrow morning can not come fast enough! (On the weekends none of the meals are with therapists, just mom, in our room.) I need some serious guidance, direction and support!

Thanks again for listening.

Love,

Kelly

2010-08-07T13:54:00.000-07:00

Happy Saturday everyone! It's nap time right now and so I am going to try and sneak in a little update on our girl. So I am sure the million dollar question you all are wondering is "how are they getting her to eat?" I had the same one! Well, it's all about CONSISTENCY!!!!! The reason that I have to be here the entire 3 weeks is because I am the main "feeder" at home. And this program is teaching me how to help and encourage her to eat as much as it is teaching her to learn to eat. So this first week, they had me observe all of the feeding sessions while the therapist ran the show, except for the am snack and dinner, where they encouraged me to try some of the tactics they were using in their sessions. This first week was about them really getting to know what worked for Abby, how the sessions affected her behaviors, what kind of volume she would take, etc. And Ryan also came as often as he could so that he could learn the techniques too.

Well, as you all know our little Abby is a fiesty, stubborn and extremely willful child. She is not a scream and throw a tantrum kid but when you want to get into a power or control struggle with her, she is ready to fight you to the end. (Let me be clear, that we are sooo grateful that our little girl has these qualities, we truly believe that is the reason that she is still on this earth today with us. She wanted to stay and she fought tooth and nail to do so!) So if Abby doesn't want to do something, she doesn't. And the docs explained it this way...... for the last 4 years Abby has been in complete control of her eating. When she wanted a bite of a cookie she had one, when she wanted to sit at the table with a huge bag of doritos and eat till her heart was content we let her. If she took 2 bites of lunch and then got up out of her chair because she was done we let her. If she wanted yogurt for dinner when we were eating chicken and potatoes we let her, all because we welcomed ANYTHING at ANY time she was willing to put something in her mouth. In fact, we got those tips from the professionals themselves. They wanted eating to be such a happy, positive thing so that maybe she would continue to eat more and more on her own. Well, obviously that didn't happen and now we are here, completely taking all the control away from her when it comes to food, well most of it anyway. And they warned us that we would be seeing some definate behavioral changes because of it.

So everyday I turn in a menu to the dietician that I fill out of food for the following day. They have her on a high calorie flavored milk, (choc, straw, or vanilla, they trade off) for her main meals and a high calorie juice, (peach, orange or wild berry, also alternating) and beyond that I get to pick things that we know she likes. And new things to try....different consistencies, textures, tastes, etc. So a typical day would be....

Breakfast:
pancakes with syrup
hash browns
yogurt
cheerios
straw. milk

AM snack:
banana
string cheese
pretzels
peach juice

Lunch:
Turkey Sandwich with cheese and avocado
bag of chips
watermelon
cookie
choc. milk

PM snack:
cinnamon teddy grahams
fruit yogurt
peaches
wild berry juice

Dinner:
Alfredo pasta with cream sauce
dinner roll
applesauce
choc. cake
vanilla milk

Lots of food, huh?!!! That's what I said. But she never ends up even trying all the things ordered and that is expected. But they want choices for her and variety.

So the meal is delivered about 15 minutes before our scheduled eating times and if we are with a therapist we put the tray in the wagon and take it down to the basement where the feeding clinic is.

They have her sit down in HER chair with a therapist next to her and they place two different choices in front of her. They then let her decide what she would like first. Then they let her eat on her own with lots of praise, "what great chewing Abby! Wow, that was a great bite!, etc...) and then when she slows down or starts to show resistance, they start taking more control. So when she says she's done, after her typical few bites, they quickly say, in a very happy and cheerful voice, "oh Abby, we are not done with lunch yet! We have more bites of our sandwich to eat!" She usually complies with another bite or two but then stands up while saying, "I'm all done." "Abby, we are not done with our lunch yet, please sit down." Again, all said as sweet as pie. Then it is usually followed by a choice question...."Abby would you like another bite of your sandwich or a bite of your chip? She will usually answer, "a chip" and then she takes a bite. But then she will quickly stand up and get out of her chair again. And calmly and kindly they ask her to sit down.

On a side note......
They told us that there should be nothing negatively said or done while eating. "The table is not a place for disciplining." So every reaction or respond to her action needs to be a calm and positive one. WOW! This is where I am learning.....more specifically, learning PATIENCE!!!! Because when she gets up out of her chair 30 times in one snack session in the room with me, it takes everything out of me not to just yell at her, "SIT YOUR BUTT DOWN!!!!" Instead it is an "Abby, please sit down....Abby, where are you suppose to sit while we eat our food? Abby, you need to sit in your chair...all the while with a calm, sometimes firm but loving voice. OH MY GOSH....learning, yes I am definately learning and growing!!!!

So that is where the consistency comes into play. They do not let her get up from the table until she is done...and not when she wants to be done, it's when they think she's done.

So back to the typical meal....

Actually, there is just sooo much more to share and nap time is over so I will have to share on the next post.......

Much love,

Kelly

An update from mommy

2010-08-05T09:39:00.004-07:00

Good morning Abby fans....it"s Kelly. I had a quick minute while Abby is playing in the playroom and so I thought I'd do a little update on this laptop that was given to me yesterday by the child life specialist. Her name is Peggy and she is great. She is always checking in to see what she can get for Abby for "fun" time. They have an awesome playroom here at CHOC and lucky for us, it is on the fifth floor, which happens to be Abby's floor. Peggy took abby to the playroom yesterday and she did some fun crafts. She painted a ceramic magnet that now resides on our little fridge in our room. She decorated plates with glitter and drew pictures....she had a great time! The docs, nurses, therapists, psychologists, child life specialists...all the way down to the cleaning crew are so kind here at CHOC. They are always making sure we are ok and comfortable.

Abby has been sleeping pretty darn good. And actually so have I. I brought a twin size blow up bed that I blow up, (actually the internal pump blows it up :o) ) and then I take it down in the morning so we have more room to move around during the day. It is surprisingly very comfy. Abby loves that mommy is sleeping right next to her on the ground. Thankfully she only takes a few minutes to fall asleep and then once she is out, I am able to turn on the TV real low or get on this laptop and she sleeps right through. Thank goodness...it is MY quiet time.

The schedule that they keep is very tight. The doctor comes in about 7:15 or so and checks her out, listens to her chest, looks in her ears, etc....then the nurse comes in around 7:30 to take her temperature and weigh her. Then they dispense her meds....(she takes an anti-seizure med day and night and they have her on a drug called Periactin. It is an appetite stimulant.) So we make sure to be dressed and ready to go before the doc gets to the room because at about 7:50 we have to head down to the basement of the hospital to the rehab clinic where Abby eats three out of her 5 meals per day, with a feeding therapist. As Ryan mentioned, each session is about an hour long. So, breakfast is at 8:00 to 9:00 with a therapist and then we have snack in her room, just her and I at 10:00. Then after snack, she goes to the playroom and mommy gets about 45 min. to herself, YEA!!!! Next is lunch, at 12 noon for an hour and if she does well they usually let her play in the rehab room where it looks like a fun gymnastics gym. They have big swings and a big "ball pool" that she loves to ride the slide into. (All things they use in occupational and or physical therapy.) Then we get back to her room about 1:15 -1:20 and I let her watch a" DORA, the explorer" or one of her dvd videos for 20 minutes and then I turn of all the lights and draw the drapes and she takes a 45 min nap or so. Then we head down to the basement again for 3:00 snack with a therapist. After that we have a big break. Dinner isn't until 6:00 and it is in our room, just her and I. So during our break, Daddy usually comes over and the 3 of us head outside, Abby rides her bike to a nice size grass area where we kick a ball, run around and just enjoy the fresh air. It's my favorite part of the day. And then after dinner, we take a bath together, get our jammies on, blow up mommy's bed, read a story, say our prayers and lights out at around 8:30 or so. And then we wake up and do it all over again.....FOR 3 WEEKS!!!!

So far, so good. Abby is definately loving all the one on one attention from mommy and everyone else here at CHOC....(she is quicly becoming a little celebrity around here!) I am sure she is going to have some serious adjusting issues when we get home and she has to share her mommy time with her two little brothers again! And I am doing pretty good too. I am missing my boys soooo much it hurts, but they are with Grandma and Grandpa having soooo much fun!!! Going to the beach or the pool everyday, getting tons of love, hugs and kisses. So that helps for sure. I am so excited for when we are outta here and all together again as a family!!!!!!!!!!!!!!!!!!!!! Can't think of anything that sounds better in this whole world!!!! AND with NO g-tube feedings???? WHAT???!!! I still can't believe it!!!! We have lived and breathed by her tube feedings for 4 years.....and it has been painful, for her and for us. So to see the light at the end of the tunnel so close is sooo exciting! So please continue prayers for our little girl that this program is successful for her. I will check back in with you all soon and update you on Abby's eating progress. There is so much more to share but playroom time is over and we have to get down stairs for her 12:00 lunch. Thanks for listening.

Love you all,

Kelly

Seizures, Fevers, and 3 weeks in the Hospital

2010-08-03T10:32:00.000-07:00

Hi Abbyfans,

We're baaaaaackk!!!!! So let's get down to business.

Chapter 1 - "The Seizure"

2 Sunday's ago, on July 25th, Kelly woke me up at 4AM and told me to get into Abby's room. She was having another seizure and was burning up. The entire left side of her body was shaking more than it ever has in the past. Abby has simple partial seizures that occur only when she spikes a fever which is known as a febrile seizure. A simple partial seizure means that only part of her body, her entire left side, is affected. She doesn't lose consciousness either. She can still talk to us but usually doesn't make much sense. Still though it's heart breaking to hear her little voice as she is trying to make sense of what's going on. (click here for more info on febrile seizures)

So anyway, I ran downstairs to get the Diastat, which we have on hand to stop Abby's seizures. It's basically Valium and is supposed to calm her down immediately. It's a rectal medicine and Abby was yelling "no! no! no!" as we were giving it to her which of course just crushes us. But Kelly is AMAZING in these situations and was able to give it to her. Then she just held her while I said a quick prayer. Kelly and I were pretty scared at this point. She doesn't usually have more than 1 seizure every 6 months or so, but she JUST had one about 3 weeks prior to this one. So of course our heads are spinning as to what this means. Are her seizures going to become consistently more frequent? Will they get progressively worse? Do we need to change her medication? Do we need to increase her current medication? But increasing her medication makes her clumsy and unstable and listless....What will we do if they put her on something that does that to her?! She'll fall everywhere and hurt herself. All these questions were racing through our heads and the Not Knowing was and is the absolute worst.

I should also mention that these seizures don't start out with her entire left side shaking. They start small. Typically her left hand will start shaking and then her arm. Next her leg will start shaking a little bit, then a bit more and more and more etc. It will continue to get worse until we stop it. And since we've been there at the beginning of some of her seizures, we know that this process actually takes a while. So we figure that Abby must have been seizing for about an hour before we got to her and gave her the Diastat and that of course breaks our hearts too.

Protocol is to call 911 after giving her the medicine which we did. It took Abby 15 minutes for her seizure to stop which is actually a long time. The Diastat usually works a lot quicker. So again, here come all the questions racing through our heads as to what this could possibly mean. On the way to the ER, Abby also started having another one. What?! Another one?!!! Just 20 minutes or so after the previous one stopped?! Oh man, what does THAT mean?! Kelly, who was strapped to the gurney herself and holding Abby in her arms, told me that once this happened, the ambulance lights and sirens turned on and away they went. Fortunately, we live close to our hospital and they immediately gave her some more meds to stop that seizure. Since they couldn't seem to get Abby's fever under control the docs decided to keep us there for the rest of Sunday, Sunday night and Monday morning.

It turns out that Abby had some nasty virus. It seems that Abby only has seizures when she spikes a fever, which is a good thing. If she starts to have seizures other than when she spikes a fever, we will begin to really worry. At least now, we can associate her seizures with fevers and feel pretty safe that she won't have a seizure unless she gets sick and spikes a fever. Anyway, Abby was discharged on Monday morning but still was not 100%. At this point, Kelly and I were very, very nervous. If she didn't get healthy in a week, there would be a lot of problems.

"Chapter 2 - Abby and her Feeding Tube, aka the G Tube"

As you all know, Abby is fed through her feeding tube, or G Tube. About 85% to 90% of her daily nutrition is administered this way and not by mouth. Abby just doesn't like to swallow food. She likes the taste of food and will put food in her mouth, but she doesn't like to swallow it...instead she just spits it back out. Over her 4 short years, Abby has had many issues with her stomach and eating. At the beginning, some of you may remember that Abby had terrible acid reflux and couldn't keep any of the formula down that we gave her through her G Tube. The formula would go into her tummy and then Abby would retch and gag and eventually throw it all up. This of course caused a lot of pain and extreme discomfort in Abby's throat. The only way to keep this from happening would be if we fed her at a ridiculously slow rate which of course wouldn't work long term. Then we found out that she didn't have an LES (lower esophageal sphincter) and so the docs performed a fundoplication surgery. I don't want to get to into all of this again, so feel free to read through my previous posts for more details on this whole ordeal. (or click here for more info)

Anywho, what I'm getting at is that Abby is still relying on the G Tube to get her daily nutrition intake. This means that Kelly feeds Abby 3 to 4 times each day through her tube. At night we hook her up to a pump that feeds her slowly all night long. It's not the most convenient situation to say the least. We were hoping that Abby would eventually learn to eat, but this hasn't happened. Like I said, she enjoys the taste of food and is willing to put anything in her mouth. But from there, she just spits it back out.

Fortunately there is very intense program at CHOC that Abby was on the waiting list for to help with this situation. The program is designed specifically for kids like Abby who are G Tube Dependent and need to learn how to eat on their own. This program takes 1 patient each month and consist's of a team of about 14 people! This team of people includes everyone from the person that deals with our insurance company, to a nutritionist, a psychologist, feeding therapists, her GI doctors etc... Oh! And it's an intense IN PATIENT PROGRAM FOR 3 WEEKS! Abby would have to be in the hospital FOR 3 WEEKS! Why you ask? Because they are not going to feed Abby through her G Tube and need to keep a close eye on her. And they need her focused. She will not be able to see her brothers for a week. So what about Kelly? Well, that's the kicker. Kelly has to be there with her too FOR THE ENTIRE TIME! Yikes! But we were on board. We were willing to do whatever it took to get Abby off of the G Tube. The idea of not having to deal with that thing each day is just awesome.

So...about 3 months ago, we got the green light for the program! Abby was going in on Monday, August 2nd. Yeah!!! As the time approached Kelly we were getting more and more anxious but also more excited. Abby was going to learn to eat! Abby was going to learn to eat! No more G Tube! No more G Tube! The mere thought of that was almost too good to be true.

Then, a week before she was supposed to go in, the fever and the seizure happened. "Oh No!" we thought. There is no way they will start Abby on this program if she is sick! That means we will have to wait for AT LEAST ANOTHER YEAR before we get her in again. So you can see why we were freaking out so much about this past fever. Everything was finally in place to get Abby into this program and the idea that she would have to sit it out for another year was heartbreaking.

I believe firmly in the power of prayer though. Our family, our friends from church and work and everywhere else said prayers for Abby and it worked. She broke her fever and got well enough to start the program this past Monday. As nerve racking as this was, we had all the faith in the world that Abby would be better in time for the program.

Chapter 3 - Feeding Therapy - Week #1

Abby is doing pretty good so far. She is on a very strict schedule each day and is learning how to take small bites and swallow them before she goes onto the next bite. A Therapist will sit with her for an entire hour and KEEP her in her seat to eat her meal. Keeping Abby in any seat for an hour is tough, let alone getting her to eat at the same time. So far though, she's been doing well.
Here's the schedule:

8AM - Breakfast with a therapist
10AM - Snack in the room with mommy - no therapist
12 Noon - Lunch with a therapist
3 PM - Snack with a therapist
6PM - Dinner in the room with mommy - no therapist

All of these sessions are an hour long! The therapists have said that many kids start off doing pretty well but experience some burn out towards the end of the week. The routine starts to get old and they get a little more restless. Let's hope that Abby has the stamina to keep it up!

I haven't mentioned this part, but Abby gets to wear normal clothes and we were allowed to decorate her hospital room too. In fact, they encouraged us to bring her bedding from home, pictures and all kinds of things, which of course we did. We even brought her little purple tricycle which she rides around the floor. In true Abby Fashion, she has already made a name for herself. Check it the pics.

Mommy and Abby on her bed - Note the cute bedding AND the pink rug!

Abby in her new chair next her NEW backpack for the "Vacation"

Here she is taking a "lap" around the floor on her tricycle.

Abby has a wagon all to herself for the entire 3 weeks. She uses it to bring her food down to the therapy sessions. Kids usually like to sit in the wagon with their food. Not Abby! She'll pull it all by herself thank you very much!

"Outta the way! I'm comin' in!"

What a little cuttie, huh?!

Phew! That was a long one! Thanks for hanging in there though and allowing me to get you all up to speed. I will be updating this blog at least every other day while Abby is in the hospital to keep everyone up to speed on her progress. Say some prayers for her that this program will be a success!

We love you guys,

- Abby's Management

Hi....

2009-12-23T09:39:00.000-08:00

So...having 3 kids is quite busy! And so much has happened since my last update I don't even know where to begin. We have Halloween to talk about; Abby's seizure situation (she's had a few since my last post including one yesterday), the latest with her stomach, our 12 hour ride up north for Thanksgiving, how our new little guy Jack is doing, and of course the many the funny stories of Eddie,

This is actually why I haven't written. I have felt so overwhelmed that I wouldn't be able to catch up. But here goes nuthin'...

Halloween was great. Abby was the cutest little bumble bee you've ever seen, Eddie was a dinasour, and Jack was a tiger. We Trick or Treated around our neighborhood and they had a blast.

For Thanksgiving we decided to take a trip up north to see my family. Jack had to get his shots on the Wednesday before Thanksgiving at 10AM and knowing how terrible the traffic would be later on that day, we decided we would leave straight from the doctor's office. So Abby and Eddie were strapped in the Yukon at 9:30AM. The three of us stayed in the car while mommy and Jack went upstairs for the appointment. By 10:15AM we were on the road. IT WAS ALREADY PACKED. It took us over 5 hours just to get 90 miles!!!! And the portable CD player we had was poopin' out on us too, and that was the ONLY thing keeping the kids from freaking out. We would start a movie but it would always stop a few minutes later and Kelly would have to climb back there and fix it. This went on for hours. So....we stopped in Valencia for some lunch and Kelly remembered that Kohls was having a sale on portable CD players. I called 411, got the info for the nearest Kohls (which was like 3 miles off the freeway) and we decided to go CD player shopping. Ooops. Another mistake. It's the day before Thanksgiving! The place is PACKED! And guess what? That sale for the CD Players wasn't going to start until Black Friday....the day AFTER Thanksgiving!!! Are you kidding me?!

So we put up with the CD player and luckily, one CD played fine. Of course, this particular CD couldn't have been a movie that we haven't seen in a while. Noooooo! This CD was a compilation of Yo Gabba Gabba episodes, which we had already seen a million times at home. And we don't have those earphones for the kids which meant we had to listen to that CD for the REST of the ride up. Oh man...talk about torture.

Anyway, we got over the Grapevine at 5PM and still had 4 and a half hours to go. By then though, the traffic was moving well and we finally got going. At 9:30PM, exactly 12 hours from the moment I strapped my kids in the car, we pulled into my dad's driveway.

For the record, I have to say that Abby and Eddie did great. But then, they were in super comfy car seats, mommy was handing them snacks and juice whenever they wanted, and they still wear diapers so when it was time to go...no biggie....just let 'er rip and keep on with the in flight movie. I wished many a time that I could be in their shoes for that trip.

Oddly enough, we drove home the following Sunday which is supposed to be the 2nd busiest travel day of the year and we made it home...DOOR TO DOOR...in 6 hours! Either way, I am NEVER driving on the Wednesday before Thanksgiving ever again.

Now, on to Christmas. Eddie wanted "a big football!" and Abby wanted "A baby and a baby stroller." It was sooooo cute to hear them say what they wanted in their little kid voices. (Note to self: Get these voices on tape!) Christmas was amazing. The kids get it now and were super excited for Santa Clause. Last year they were afraid of him, but not this year! Check out Eddie in his Elf hat giving Santa knuckles in the pick below. Love it...

At the moment, times are a bit lean at our house and yet this was certainly the most special Christmas yet. I missed my mom terribly of course, but at the same time I knew she was with us in spirit. And the love we felt from friends and family was amazing. We are so blessed and so lucky to have such wonderful people in our lives.

As I mentioned above, Abby had another seizure yesterday. She was at the park with mommy, Eddie, Jack and some friends, Olivia and Tate with their mom Suzanne. I got a call from Kelly who handles these things beautifully. She told me she gave her the Diastat medicine (which she keeps with her at all times) to her to stop the seizure, but it had been 3 minutes or so and it was actually getting worse. Do we call 911? Do we take her to the ER ourselves? What do we do?! Usually the diastat works quickly but this time it wasn't kicking in as fast. Is this a different kind of seizure? So many questions....

Well, after about 5 minutes it FINALLY stopped and Abby fell asleep in momma's arms. She was like a rag doll she was so tired. And what were Eddie and Jack doing this entire time? Luckily, Suzanne was there to take care of Eddie, but Jack was crying his eyes out before the seizure started. Of course the only option for him was to put him in his car seat which is not where he usually wants to be when he's crying, especially if he can't see anybody. Kelly put him in anyway and braced for all the cries and the screams. But this time he was fine. He actually fell asleep! He stopped crying and didn't make a peep during this entire episode. What a miracle that was. Abby woke up today feeling much better and even made it to school.

Alright then. So I'll do my best to drop little quick tid bits here and there. I know there's stuff I've forgotten to tell you about that has happened over the past few months but I'll be sure to add those in as I remember them. Like Abby and Eddie dumping baby powder all over the place! Yeah.....that was a good one. At least they were playing together though, right? :-)

Be good Abby Fans.

-Pops

PS - On a different note...I often call up old friends or family on my way home from work to catch up. If I leave them a voicemail, it almost always says, "you have about 20 minutes to call me back while I'm driving home, but once I'm home I'll be busy so call me after 8:30PM when the kids are down." Some have asked why I say this and I say it's because I have my hands full when I get home, but since I could tell that some didn't believe me...I thought this picture below might clear up any doubts!

PPS - Here is a little video I made for my crazy son Eddie. A few people have said that he reminds them of Charlie Brown....hence the song choice. My favorite part is how he gets in the crib! By the way, be sure to pause the music that is playing right now at the top of the blog on the left and then play this video. Otherwise you'll have two different songs playing at once.

Enjoy!

Jack Dylan Gaya is here!

2009-09-26T10:45:00.000-07:00

Hey Hey Hey Abby Fans,

Well...on Friday, Abby got a new baby brother! Mommy and Jack are doing great. Mommy is recovering very well from the C Section surgery. Jack is healthy and eating no problem. And yes, don't worry, daddy is doing well too! Just kidding.

Here are a couple of pics right before the surgery.

And just a couple of hours later, here he is...A perfect little guy.

6 lbs, 8 oz, 18.5 inches long with brown hair.

Mommy and Jack looking just perfect!

"Come on guys! Get over there and kiss your brother on the head for a picture!"

"Shoot! I missed it. Okay, get over there and try again!"

"Alright! There it is!...Nice."

And since I'm here, I have to mention some GREAT news about Abby. She gained 3 lbs last month! She hasn't gained more than a pound in over a year, so 3 lbs in one month is AMAZING! We have her a new health shake and it's working! Yeahhh!!! I can't tell you how happy we are about this. She is also back in school too and loving it. She is getting more confidence and talking more in class as well. I couldn't believe it when her teacher said she hardly spoke at all because she is such a talker at home.

As for Eddie....oh man. He is such a little rascal. Here's a quick list of his recent "activities:"

He took an egg from the fridge downstairs (which has a child proof lock on it...that he figured out how to open!) and brought that egg upstairs only to CRACK IT ON OUR BED.

He also took his poopie diaper off one day AND SAT DOWN ON OUR BED!

Don't forget about the time he spent in the bathroom putting all of the toilet paper in the toilet and then flushed the toilet about 5 times, which obviously FLOODED THE BATHROOM FLOOR.

Luckily, Kelly was right there for all of these and was able to clean it all up, but wow. And according to all of you veteran parents of crazy kids, Eddie is just getting warmed up. What?! Are you kidding me? Oh well, I guess we'll just have to wait and see what the little nut does next.

It's a good thing he's a cute little guy.

Oh! One more thing about our Abby. She is quite the little star here in the hospital. Many of the nurses that were part of her delivery are still here and when word got out that "Abby was in the building" yesterday, a few came running to check her out. Needless to say, there were all AMAZED at how well she is doing. She was such a little show off too. She gave the nurses high 5's and dide the knuckle pound thing (which I taught her thank you very much), and then proceeded to talk and dance and giggle. It was so fun to watch.

And so...all in all...we're doing FANTASTIC!

Keep on rockin Abby Town.

- One Proud Daddy

2009-08-19T14:21:00.000-07:00

What's happenin' Abby Fans!

So...what have we been up to for the past, oh....3 months or so? (sorry!) To say we've been busy is an understatement. And in lieu of trying to recap all of it at once, I'll just give you all the highlights and then as time goes on, if I remember something, I'll just post a short little ditty.

Kelly is doing well with the pregnancy. Her contractions are getting stronger but all in all things are going well. It's a boy for those of you just checking back in and he is due September 25th. His name is Jack Dylan. I can really feel him kick now too when I put my hand on Kelly's stomach. That never gets old. I love it!

Eddie is a little rascal. He is talking up a storm and making a mess everywhere. Check this out...a few weeks ago, Kelly is upstairs and realizes she hasn't heard a peep from Eddie for about 10 minutes. That's a big problem because it means he's up to something. Eddie isn't quite unless he's getting himself into trouble. Let's face it. He just isn't the type to sit on the couch with a good book or be a good boy and play with some blocks on the floor. And this was no exception. Kelly came down to see that Eddie found a brand new bottle of...

Goo Gone!!!!

This stuff is like syrup and smells like ant spray. Anyway, Eddie sprayed it all over the brand new carpet in the house we're renting, all over the walls and of course....HIMSELF! Kelly had to run him upstairs, wash him and then called her dad for help. Thankfully, he knew a carpet cleaner who told Kelly just what to do until he could get there later that afternoon. To make a long story short, the carpet guy got the goo gone out of the carpet and all ended well...but only after a day sheer panic, stress and chaos. And you know what's crazy? Is that all of you who have had an "Eddie" all say, "ahhh...that's nothing! Wait until he does this or that!" Man, we're really in for it aren't we? And we're having another one?!!! Aye carumba.

Okay so on to the star of the day. Our Abby. She is so cute it's ridiculous. She loves to give high 5's and do the knuckle pound thing. (I taught her that one). She was in summer school at the beginning of summer and of course loved every second.

Take a look at some of her school pics....

Lately though, her tummy has really been hurting. She STILL retches and gags if we feed her too much formula through her tube. Often times, even when the feeding goes well and she seems to be doing okay, she will start to cry or throw a fit for whatever reason, which will in turn cause her to start to retch and gag as well. It is heartbreaking...especially now because she says "Mommy! Tummy hurts!" She has also started to fight us when we hook her up to her feeding pump at night. She never used to do this before. She'll say, "No daddy! Don't hook Abby up to the pump. Leave the tube off!" Ahhhhhh.....man. It stinks!

Looking for answers to all of this Kelly took Abby to her GI doc last week and he was not happy either. He was very discouraged to learn that she is still retching and gagging after an entire year's time from her fundo surgery. She should not be doing this and something is definitely not right. The plan is this; We are going to put a GJ Tube back in. GJ stands for" Gastrostomy-Jejunostomy" (Click here for more info) Basically it's a feeding tube that has an extension on it which takes the food past Abby's stomach, directly into her intestines. We're doing this to give her stomach a break. The hope is that it will relax and give it time to sort of fix whatever is causing it to gag and reflux all the time.

If that doesn't work, the next step is to dilate the fundo. I have no idea what that means other than the fundo may be too tight and dilating it basically means to loosen it. Here's the catch Abby Fans....it has to be done over 3 different surgeries and they are not fun for the kiddos apparently. Clearly we're hoping it doesn't come to this. So keep those prayers up that Abby's tummy will get the rest it needs with the GJ Tube. Oh, by the way, we can't feed Abby very fast with this GJ Tube, so she will have to be hooked up to a feeding pump for 18 to 20 hours A DAY!!! We have a cute little backpack for the pump but she hates it. So that will be another challenge.

Now...with all that being said, our Abby is STILL a happy little thing. She is as cute as ever and despite all the retching and gagging, she is gaining some weight and finally getting a little meat on her bones. Check out the pics below. Abby was having fun with stickers and put them all over herself. Oh wait! Those aren't stickers! Those are mommy's STAMPS!!!! An entire book of stamps!!!! She's learning from her brother....

In other news, Eddie turned two in July! We took him to Ruby's for a little family celebration. He loves to sing happy birthday now. We even hear him singing it around the house to himself. It's great.

Some recent "Eddie-isms" are:

Pointing to his bum, he says, "Daddy....POOT!" Translation: I pooped dad. Change me now or I will sit on you.

Pointing to the freezer he says, "Pot-ta-col!" Translation: Give me a popsicle or I will poop and sit on you.

Another classic is, "Momma dadda....aaahhh you?" Translation. Mommy daddy where are you? He just leaves the word "where" out all together. I love it.

Abby's most recent Abby-ism is "trip trops" which means Flip Flops. The cutest part is that she knows she's saying it wrong, but she also knows we love "trip trops." So when she says it she has that smile on her face that kids do when they know they're being cute.

And speaking of cute, check out Abby on her first boat ride! Some friends took us boating a couple of weekends ago and it was a blast. So...do you think she likes wind in her face or what?! Look at that smile!!!!

I mean...come on! Look at this nugget.

And of course the Eddie Meister. Just chillin' in the back. He wasn't as into it as Abby but I think he'll come around.

There's a lot more, but this should do for now. Abby did get a new brace and I'll post some pics of those soon...maybe....hopefully. Who knows.

Love you guys,

Abby's Daddy

Our Little Miss Magic Keeps Rockin'!

2009-05-31T21:42:00.000-07:00

Abby Fans,

It's been a while. Abby and Eddie and pregnant mommy have been quite busy though. As I mentioned before, Abby started pre school the day after her birthday! She was eligible for the school once she turned 3 years old, which technically was the day after her birthday. Well that was a Thursday, so Kelly was thinking that perhaps she'd just start Abby on Monday...but no way. The teacher called and said she really wanted to get Abby in there ASAP, that she had heard all about her and was excited to meet her. So mommy ran out, bought Abby her little "hello kitty" backpack that is on wheels and took her in. Abby LOVES it! She has a lot of friends and enjoys the teachers. That's right...I said teachers...as in 4 teachers in the classroom. Abby is actually in a special needs pre school so there is one teacher and 3 aids. Anyway, on the very first day, Abby waived goodbye to mommy and got right down to business. Mommy on the other hand didn't do so well. She missed her little angel. And Eddie missed his buddy! In fact, he STILL misses her. He is not a fan of this school thing. First of all, he walks up to the classroom with mommy and Abby to drop Abby off each day, so he can see inside, see how fun it is, and then he has to leave. What a bummer! Sorry Eddie...your time will come.

About 2 weeks ago, Abby got really sick. She would show some signs of improvement and then it would get worse again. At one point she spiked a 104 fever! This is a huge concern for any parent and especially for Abby because a high fever can trigger another seizure. So Kelly took her into urgent care where she got a shot of amoxicilin to jump start the medication and a bunch of Tylenol to bring down the fever. We're thinking she must have had a bacterial infection and some kind of viral infection too because some symptoms went away after the shot, but some others got worse. Like her cough for example. Here we are at week 3 and she is still coughing a lot. Aye ca rumba!!! Are you kidding me?!!!

Oh yeah, Eddie got a double ear infection and some other virus too. So he's been a mess and wants mommy to hold him as well. And his nose was running like you wouldn't believe....well okay...maybe you would believe it, but you get the idea. Oh, here's a question I have for everyone. Am I the only one that now has a snot stain, or dirty hand stain or some kind of stain on the shoulder part of 50% of my shirts? Seriously! Every time I come home from work, Eddie and Abby run into my arms (which is the best part of my day by the way). The only thing is that all of Eddie's snot and dirty hands and everything end up on my shoulder. I really don't know if I have a shirt without some Eddie or Abby left overs on it. So now I make like I'm chasing them and run into the kitchen where I grab a dish towel, toss it on my shoulder and THEN pick the little bambino's up.

Well that's all for now friends.

Be good Abby Addicts! Enjoy the pics from Abby's Birthday!

We love each and every last one of you!

Abby celebrating her birthday at Ruby's Diner

Abby Was loving the sunday!

Easter weekend - in La Quinta -

Check out Eddie and his splashing skills!

(Be sure to go back to the playlist up top and press pause so the music stops and you can hear Abby and Eddie splash around!)

Wait! Abby...are you riding Eddie's scooter? Wait! Are you pushing with your LEFT foot?! Way to go Abby!

Happy Birthday Abby!!!!

2009-04-28T21:52:00.000-07:00

Happy Birthday Abby!

Today is a GREAT day. Our little Abby Girl is turning 3 and she is cuter than ever. She is repeating EVERYTHING we say these days, including calling me "Ryan" when "daddy" doesn't work. She doesn't pronounce her "R's" too well though, so it sounds more like "Why-an!" which of course I love. Abby and Eddie have really started to play more together too. Eddie adores his sister and Abby is realizing that she can totally mess with him and he lets her. For example, during bath time, I like to squirt Eddie with the water toys. He giggles at first but then he gets annoyed with daddy. But not when Abby he does it! She has learned how to squirt him with the water toys too now, but he thinks it's hilarious when she does it. He gets all excited and lets it go on for as long as Abby wants to squirt him.

And here's the big news...Abby is starting pre school next week!!!! Wooohooo!!! That's right Abby Fans. This same girl that we were praying would simply stay alive is on her way to school. Over the past few weeks, some ladies from the school district visited Abby over a number of visits to evaluate her. And wouldn't you know it...Abby tested normal in every category except a few. Her pronunciation is a bit delayed, meaning she says her sentences very slowly. This is common for Cerebral Palsy kids though. And obviously her physical stuff tested below average. But! She actually tested BETTER than average cognitively, which is her memory and understanding of things. How great is that?! It appears we have a smart little cookie on our hands.
So anyway, the pre school is for 2 and a half hours each day, and is set up especially for kids with special needs. There's a nurse in the classroom and Abby will be in a group speech therapy session as well as a 20 minute one on one speech therapy session EVERY DAY!
Of course it's going to be tough to give her up because Abby still wretches and gags a lot. It's quite painful and when this happens she just wants her momma. Kelly has actually been to the GI doc a few times recently to see what's going on, and he put Abby on some other medication that is supposed to calm everything in her tummy that stimulates this gag reflex. We really hope it works. For 3 years Abby has always been going through something and we feel like this could be the last major hurdle for a while and are anxious to get it under control. Not to mention, there will be no progression with her eating until we eliminate this gagging and retching that happens whenever she eats something. Would you be interested in eating if you knew that is what would happen afterward? No way. And Abby's right there with ya. Please say some prayers that this medication works.

Abby is such a blessing. She is has done so much in her 3 short years here and has touched so many already. She never ceases to amaze us and just when I think she can't get any cuter, she does something like call me "Why-an." Or she tickles Eddie's feet when I am trying to hold him and calm him down as he's screaming his head off. My holding offers no comfort, but as soon as Abby started playing with him, Eddie smiled. She has that touch. It's the Abby Touch. She gets deep in your heart and soul and warms it up like nothing else could.

Happy Birthday Abbers. We love you. Say Happy Birthday to your sisters too for your mommy and me okay? I know Emma and Maddy are with you a lot and something tells me you know that better than anyone.

How about some pics in Abby's Birthday Suit for her Birthday!

Abby and Eddie LOVE Bath time

I just can't get enough of her glasses! Are they cute or what?!

Eddie has been into pooring cereal on the ground as you all know

Before he used to run when he would get caught...no he just looks at me as if to say, "what do you want?"

And of course he has taken his cereal escapades to a new level. Filling things up with the cereal. Most notably of course are my shoes!

Abby is a talker!

2009-03-30T08:57:00.001-07:00

Hey Hey Abby Fans,

I hope everyone is doing well. Things are fantastic on our end. The kids aren't sick anymore, Abby is talking like crazy and the pregnancy is going well. At least on my end. Kelly is still super sick and gets nauseous a lot which is no fun, especially with two needy kids.

I had the "opportunity" to watch the kids solo this weekend because Kelly had a girls weekend in San Diego. I gotta tell ya, I don't know what all the fuss is about. It was a piece of cake. Eddie is such a calm, sweet little guy and Abby listens to everything I say and is even starting to pick up after herself. If you're actually believing any of this, then you must be reading up on my kids for the first time...because anybody who has read about or met Abby and Eddie knows that they are INSANE! I love my wife. I loved her before this weekend, but now I REALLY LOVE MY WIFE! How does she do it? Eddie is a frigging ping pong ball on crack. And Abby has a stash of whinny pills in her bed that she takes each morning. They last all day too. Let me set the stage. Abby is at my side ALL THE TIME, pulling on my pants saying:
"Daddy! Daddy! Pick Abby up! Up Daddy! Up Up Up Up Up Up Up Up Up!!!!!"
Then I say, "Abby, Daddy can't pick you up. Don't you want to play with one of your gazillion toys that were clearly a waste of money?"
Then she says, "No-Daddy, please pick Abby Lynn Gaya up"
And she has me. She has just learned to say her full name and it's precious....and she knows that's my weak spot. So what do I do? I pick her up. Nanny 911 would be very upset with me. (Yes I watch the show from time to time. I need all the advice I can get!)

Meanwhile back in the land of Crazy Ping Pong Ball on Crack Kid, Eddie has managed to take the battery cover off of the remote control and has slobbered all over the remote, which has rendered it useless. He has also climbed onto the bed where my nicely folded towels were and knocked those down, yanked on his diaper to the point that it's basically useless, and ran all over the house to throw every feasible thing he could get his hands on. But the good part is that at least he's entertaining himself. He was giggling and smiling and dancing around while doing this so I couldn't get too mad. My attempts to be stern with him were thwarted when he would flash that ridiculously cute smile at me and I too would crack a smile. Again...Nanny 911 would not approve.

So far, the kids have the upper hand on every front. I got nothin'. And while it was crazy...I had a blast. I sure am glad Kelly's home though. Woooweee. That woman is my hero.

Click on the video's to the right. I finally figured out how to post a slide show I've had that I put to a really cool version of "Isn't She Lovely" by Livingston Taylor. I also posted some of the older clips I have done in the past.

I know I haven't requested prayers in a while, but if you could remember her in your prayers for her eating that would be great. She is all about chewing and spitting. She doesn't swallow. The girl needs to start swallowing.

Thanks everyone.

Abby's Daddy

Eddie Eddie Eddie!

2009-03-13T12:33:00.000-07:00

Okay,
So I had another cold shower this morning. Eddie seemed to get his little paws on the water heater knob again. That little punk. And get this... Kelly called yesterday to tell me that when she came downstairs, she noticed BAGELS EVERYWHERE! Eddie grabbed our brand new bag of bagels and was taking them out one by one. But that's not all...he would take a single bite out of each one before dropping it on the ground. So all of our bagels now have little "Eddie Bites" in each of them.

Here's another story... Eddie is now into taking Abby's glasses and NOT telling us where he put them. We have looked everywhere for them but to no avail. Yeah yeah, I realize all you parents out there are laughing right now as you recall the times when your own kids took your glasses, keys, pens, pencils or whatever, only to be found years later behind some chest of drawers or something. However at this moment, it ain't no laughing matter! Those glasses were loaners while Abbys real pair were getting fixed. (Which Eddie broke by the way). So now I gotta fork up the dinero for the lost pair too? No joke, I had my entire recycle bin on my garage floor last night looking for those things. Nothing...nada...zippo!

So as I sit here at work eating my lunch, I thought I'd share the latest drama from Casa De Gaya. And here's the ironic part. I am loving every second this stuff. Because when you step back and you take note of everything, it's hilarious. There are moments of frustration, but that goes away instantly when Eddie or Abby just look up and smile. And to think we got another one comin'. Bring it on! I love this daddy stuff...

So so much to talk about

2009-02-27T22:01:00.000-08:00

Hi Everybody,

As most of you know, my mom, Pam Gaya passed away the beginning of February. She had a tumor right below her brain. Please check out the blog I've been doing for her at http://www.pamgaya.blogspot.com/ for more details on the surgery and everything.

Mom loved being "Grammie Pammie" and while I miss her terribly, I take great comfort in knowing that she still gets to be Grammie Pammie up there with Emma and Maddy. She will always live in me and Jocelyn and she has given me so much that I will never forget. Fortunately, this separation is only for a time and a blink of an eye in the eternal perspective. I look forward to seeing her again!

As for the AbbyGirl, there is a lot to cover so let's hop on it...

Alright, Abby's brace. As you all know Abby has trouble with the left side of her body. And for those just checking or who have forgotten what I said before about her problems with her walking, here's a quick recap (For those that do remember, just be patient...wouldya?!) When she walks, she walks with a limp since her left leg has a lot of "tone." Tone basically means that she's flexed a lot and doesn't extend or stretch her leg out very well. As a result of this, she puts her left toes down first when she takes a step, instead of the normal "heel to toe" step that you and I take. So the DAFO (which is the name of her brace)that we got was to help this. If you remember, Abby loved the DAFO when we got it! She was walking with more confidence, loved the attention and of course, it was pink! Anywho, she stopped wearing it almost immediately and here is why. One of Abby's therapists was hoping for something a bit different (I'll spare you the details) and told us to go BACK to the doc that prescribed it, tell him her concerns and see about a different one. So we booked an appointment (which took 3 months or so), and in the meantime, we didn't put the brace on her. And get this, the doc said the brace that we have had all along was fine! He agreed with what Abby's therapist was saying, (again...I'll spare you the details) but wanted to stay the course with the brace she has. So we lost about 3 months but the good part about all this was that daddy got to take Abby all by himself to Childrens Hospital in LA. The trip took forever but it was a great Daddy n Abby day. Man she's cute. We had such a good time. And now she loves that she can wear her brace. She has more confidence when she walks and it gives her more stability. In fact, it gets so much attention, Eddie tries to put it on too. It's hilarious.

Now the update with Abby's left hand. This hand is in a semi fist position with her thumb tucked under her fingers most of the time. She does open up her hand when she needs to hold something though, so that's good. For example, she loves to hold a small cup and then pull the straw in and out. Her first step is to get that cup securely into her left hand. If you watch her do this, you'll see her really concentrate on getting that cup into her left hand and making sure she has a good grip. Then she has fun with the straw with her right hand. This is actually pretty good therapy too because her thumb is open. But once she drops that cup, she will most likely tuck her thumb under her fingers. To help with this, Abby has a hand brace to basically pull her thumb open a bit and keep it from tucking under her fingers. I'm anxious to see how this helps keep that thumb open and relaxed all of the time.

When Abby eats she "chipmunks" her food as you remember. By this I mean that all of her food falls over to the left side of her mouth, into her left cheek and it looks like she has a giant gobstopper in there or something. Eventually, Abby would swallow this. But ever since her fundo surgery, Abby has become very afraid to swallow anything. In fact, now she spits the food out. The other issue is that we still can't seem to feed her very much volume into her tummy through her G Tube. Why? Well it seems that Abby's little GI tract does something called "dumping." Her stomach doesn't regulate how fast her food can go down into her small intestines. So what has been happening is that her small intestines have been getting this overflow of food which in turn makes Abby nauseous, causes her to gag and she sweats a lot too. It's terrible. The answer is to add Benafiber to her formula which is a powder and slows everything down. Thankfully this seems to be working, but man....it's been a long road with this. All we want to do is to get our little Abby chunky! I hope this is the answer. As far as getting her to actually eat again and not be afraid to swallow her food, this might be a longer road than anticipated. Swallowing her food causes so much pain for Abby that it is going to be difficult to give her that confidence back.

Eddie loves to break Abby's glasses. She's already had two new pairs so we decided just to invest in two permanent pairs...and one will surely be in the repair shop at all times. And if you thought the first pair was cute, get a load of these babies!

Here's another shot where you can see Abby's brace too. The cute Hurley sweatshirt, the skirt, the striped tights...does Kelly know how to dress our little angel or what?!

Eddie has also been quite the handful these days. And by "quite a handful" I mean the kid is a stinkin' nut. He make the energizer bunny look calm! He is Go Go Go all the time. He has one gear...the high one. He's in 5th gear all day long until he stops. He is climbing everywhere even more now and continues to get into things. His latest joy is to turn the knob down on the water heater in the garage. Of course we tell him "no" and I've even tried to put tape over it. But get this...he either brought Abby over or Abby volunteered, I'm not sure which, but either way, when I came back out, Abby had taken the top off of the knob and Eddie was standing right behind her. When she finally did it, he clapped and let out an excited laugh and then hugged Abby. He actually ended up tackling her because he was so excited but it was still cute. This is a funny story...except for when it's 6AM and daddy and mommy need to take a shower only to learn that Eddie had turned the knob down again and I got nuthin' but super cold water!!!

Here's a pic of Eddie and his Aunt Jocelyn and Uncle Tylers house. He decided to pull out a drawer and take a seat it in it.

Abby wanted some of that action too so she got in after he was done.

Not to be outdone by his sister, Eddie told Abby to scoot over!

Eddie loves to wrestle! Here we are going at it like we do every night when I get home. Playing with him and Abby after work is by far the highlight of my day.

As you all know...Abby is talking up a storm. She is learning and picking up on all kinds of words. Her nephews though, Tristan and Caden have taught her a great one! "Raise the roof!" Her is a clip of her saying that and another one that I have recently taught her..."Yo Momma!"

Okay, I'm almost done. But I need to give you all one more update. Many already know but for those who don't I need to tell you that Kelly has been very sick lately. She finally went to the doctor and found out she has something growing inside of her....A BABY!!!!! Wooohoooo!!! She's due the end of September or so.

Take care Abby Fans. Thanks for your patience.

Abby's Daddy

Good Stuff Happenin' With the Abbers

2009-01-26T12:54:00.000-08:00

Hi Everybody,

So it's been a while huh? Ooops! Well, Christmas was a blast. Abby and Eddie got a kitchen to play with and they absolutely loved it. They also got a million other things and it was a lot of fun to watch them tear through all their presents.

A couple of days after Christmas Eddie got croup, which is a cough that inflammes the airway. Then momma got some kind of a cough too and Abby started feeling crummy as well. As it turned out, momma's cough turned into bronchitis and Abby had pneumonia. I have no idea how, but I managed to steer clear of any sickness. Anyway, needless to say it was a rough couple of weeks but we got through it and everyone is doing great.

In fact, Abby is doing FANTASTIC! We decided to increase Abby's acupuncture treatments to once a week (from every 2 weeks) and I truly believe this has made all the difference. Abby talking like crazy! It's awesome. Here's a quick list of what she says:

When she wants you to sit by her, she points to the spot next to her and says, "Sit Down!"

When she wants to do something, she says "Abby do it"

When mommy is changing Eddie's diaper, she says "poo-wee! Stinky poo poo!" And she pinches her nose at the same time. (this one is my favorite)

She says "hi" and "bye bye" now too.

When we wake her up and she sees that Eddie's door is still closed, she know he's still sleeping so she says "sssshhh! Eddie...Sleeping" But the problem is that she says this really loudly.

And I think I mentioned in the past that she knows her entire ABC's and her 123's all the way up to 10 and is getting better with the numbers 11-20.

Abby is also doing very well with her left hand. The other day when we were driving I saw her in the back seat counting with her fingers! She said the numbers one through five using her right hand and I thought she would just close her right hand and use those fingers again for numbers six through ten. But she didn't! She lifted up her left hand and counted six through ten. I couldn't believe it. Of course she was having trouble lifting her fingers one at a time, but she brought her right hand over to help out. I love that little girls determination.

I know that so much has happened since my last update but I can't think of everything (and plus I'm pooped right now) so I'll stop here.

Ooohhh!!! I can't believe I almost forgot! Abby got GLASSES! FINALLY! She can see far away now. And yes, Kelly managed to coax the eye docs into getting Abby some glasses that are a bit too big for her, but they were by far the cutest pair so Kelly wouldn't have it any other way. Abby has always loved glasses so it hasn't been difficult trying to keep them on her. It's been great to watch her see the world clearly for the first time.

Check 'em out!

Note the bling bling heart on the side of the frame and then there are little hearts going down the arm toward her ear.

Abby was having fun sitting in the toy basket and Eddie thought it would be great to come over and sit on top of her. Abby didn't think that was such a good idea. About 2 seconds after this picture, Abby screamed and did her best to push Eddie out. It didn't work. Eddie just laughed.

"Eddie - Check out your new Tonka truck! Go push it around!"
"Naw...I think I'd rather get IN the truck dad! Now push me!!! C'mon dad! Push me!"

On Christmas morning, the only thing that Eddie really really got excited about wasn't a gift at all. It was raining that day and Eddie could not get enough of the puddles outside! He was jumping in them, stomping them and bending down to put his hands in them and splashing. And when that got boring, he decided to just sit right on down in the puddle!

Who's hungry?

Here is Abby in a bounce house at her friend Eva's birthday party. She couldn't get enough of it.

Check out the new boots! Is she cute or what?!

And that's all for now. With the holidays finally behind me, you all can expect more frequent updates.

The next thing I'm looking forward to is her foot brace. She's getting a new one made. The one she had didn't quite fit right. So I will keep you all posted on that too.

Have a great week everyone.

Sick again but still rockin'...

2008-12-18T12:36:00.000-08:00

Hey there Abby Fans,

Nothing too crazy to report right now...except for the fact that Eddie has croup and Abby is really snotty and stuffy. Eddie is wheezing a lot too today so his pediatrician ordered him an oral dose of steroids. Abby isn't getting it as bad as Eddie which is surprising. And even through all of this, Abby is still in a great mood. Eddie is doing okay but has his moments. He is definitely not the crazy Bam Bam that we have come to know and love.

The latest climbing toy for both Abby and Eddie is the car. I didn't really notice how funny this picture is, but take a look at Abby here!

"Oh No! Watch Out!"

And of course I thought I'd have time to put some clips to music and do all of that stuff, but who am I kidding? So...that being said, here's a clip I've been holding out on. It's Abby climbing up into our Yukon ALL BY HERSELF!!!!

All in all, things are good here this holiday season at Casa De Gaya. We have much to be thankful for and are very blessed.

I hope to have some time to something fun for Christmas... so stay tuned!

-Abby's Management

Well...at least we're consistent

2008-12-08T22:18:00.000-08:00

Hi everybody,

So last night, Eddie ate a peanut butter covered pretzel. (For those of you that don't know, Eddie is allergic to peanuts). He choked on the pretzel and coughed it up, but he still started wheezing. Well, since we've been down this road before, we figured we'd give him some benadryl and call it a night. After all, he didn't get hives like the last time he ate peanut butter. To be sure Kelly called Kids Doc (an urgent care for kids). They had a different plan. They wanted Kelly to take Eddie to the ER right away. It was a good thing too. Eddie's wheezing was getting worse so he got some steroids immediately. Then he got some benadryl and fell asleep. That little situation kept Kelly at the hospital until about 2am last night.

Then it hit us. We've been in the hospital every single month for 5 months straight. Check it out:
In August Abby had her first seizure. Hospital for a week.
In September, she had the Fundo Surgery. Hospital for a week.
In October, we took the ambulance ride for seizure #2. ER for the night.
In November, she got the stomach flu so bad we had to go the ER in Palm Springs for the night.
And December, Eddie gets to participate in the fun!

REALLY???!!!!!!

But here's the good part... Eddie is doing fine today and Abby is doing GREAT these days! She is talking talking talking!!! That's right, I said she's talking. At first when we said, "Abby, say your name," she would say, "aaaaaahhhhh," but she wouldn't finish her name with the "beeeee" sound. Now she says it! "Aaaaah...Beeeee" This is huge because she is now starting to say two syllable words with different sounding syllables. She's been saying momma and dadda and all of those, but never anything else. Well now she is. Her first word like this was actually "again." The way she says it us so stinkin' cute I can't handle it. At first she says "aaaaaahhhh" then pauses, and then says "giiiii." without the "n" at the end. I love it.

Oh, and she's a smarty pants too. No joke. She can count all the way up to 20 and she knows all the words to the songs we've been singing to her too. We had no idea her memory was this good until she started sounding out the words as we were singing to her. Then we started leaving the last word of each line of a song out to let her say it...and she did! She knew them all! Rudolf the Red Nose Reindeer is one of her favorites, so for example we sing, "Rudolf the red nose reindeer, had a very shiny...." and Abby says "nose." And we do that for the entire song and she knows it all! And not just for Rudolf, but for all the songs we've been singing.

So while it continues to be Drama Central over here it is also a very happy and positive place to be. We got miracles to make happen here people. We can't be bogged down with the drama. It's pretty clear that it's going to keep happening and yes, it stinks when it does. However, when it happens, we tell you guys, you help us through with prayers and love, and then we're back on track with all the good stuff. And we love you all more than words can describe for all that you do. The simple fact that you all check in from time to time to see about Abby is great. Thank you for doing that. It really does mean a lot to us.

Have a good week. We love you.

Happy Thanksgiving Abby!

2008-11-24T21:56:00.000-08:00

Hi Abby,

It's your daddy. It's Thanksgiving time and you know what that means? That means lots and lots of food! I'm sure you're going to eat half the turkey huh? Hee hee...just kidding. Thanksgiving is also a time to say "thank you" for all the stuff we have and the people we love... and Punky, I love YOU! I am soooooo thankful for you. The best part of my day is walking through the door to see you and Eddie. Every time you do your little run toward me to give me a hug, I fight back the tears. You are a miracle Abby...do you know that? There was a time when mommy and I simply hoped that you would smile at us and know who we were.. I didn't even dream of you walking or talking or anything. And now look at you Punky. Loving on you each day makes everything else seem so trivial. You are such a fighter and always take your challenges head on. I love that about you. I know Emma and Maddy are there with you during those times and that warms my heart.

Your next biggest challenge is your little (or not so little) brother. I love that little guy a whole bunch too and it's fun to watch you with him. I know he gets in your way and bugs you sometimes but let me tell you something Punky, he absolutely adores you. His eyes light up just as much as mine do when you walk in the room. So be nice to him. He's going to get really big and will be a good guy to have on your side! I love you Abby. I am so happy and proud to be your daddy.

Happy Thanksgiving....

ENJOY THE PICS!

Our little girl has been outfitted with yet another accessory. She now has a foot brace which is going to help with her walking. It's called a DAFO #2. For more info on it...click here She walks so much better with this little thing! She takes "correct" steps when she wears it which makes her a lot more stable. And by "correct" steps I mean stepping so her heal lands first and then her toes. Take a step right now and notice that your heal lands first. With Abby's left foot, her toes would land first and that's why she was always so unstable. This brace is fixing that! Wooohooo! One problem though....shoes. We don't have an answer yet either, so stay tuned. Rest assured though, it will be cute, whatever momma decides. Did you know her brace is pink?

Abby loves her DAFO. Check out the fashion pose.

CHECK OUT PUNKY WITH HER NEW GLASSES FROM GRAMMIE PAMMIE!

Abby's church outfit on Sunday. Look at the bows in her hair!

Stop it!

SUPERSTAR!

Ummmm....yyeah....gonna have to keep the pantry door closed from now on....

When we ask Eddie to do his "crazy face" this is what we get! Love it!

Look at my boy! What a little charmer. Don't let him fool you though...he's NUTS!!!!

Abby take the fundo for a test drive

2008-11-10T22:41:00.000-08:00

So get this...

Kelly and I took the kids to visit Great Grandpa "G-Pa" and Great Grandma "G-G" in La Quinta this weekend. Friday was great. We took the little bambino's to the pool and they had a great time. Eddie is getting very brave and is very confident around the water which is great. Abby has always been a water lover so of course she was having fun too. For dinner that night we went out to eat and had spinach artichoke dip, mozzarella sticks, penne pasta and bread and dessert. The weekend was off to a fantastic start.
But the next morning, Eddie started throwing up everywhere. Did he swallow too much water at the pool? Did he get too sick with all of the greasy stuff from last night? No. The poor little guy had the stomach flu. And to make it worse, it all started coming out the other end which of course turned his little bum raw. He SCREAMED his heart out every time we had to change him.

Okay, so this is all sad for the little guy, but this is Abby's blog, so what's the big deal? Well, the ONE thing we were hoping to keep Abby away from was the stomach flu. But since Eddie had it, there was virtually no chance Abby would escape it. We were right. By Sunday, Abby was 100% in stomach flu mode. Here's the thing though. Abby has a fundo. The fundo is basically a few pieces of her stomach that have been wrapped around the esophagus and stitched together. This keeps the food Abby eats down which was the goal as we all know, but remember....the bad thing is that Abby CAN'T throw up, not even when she needs to. Instead she wretches and gags(which sounds like dry heaving only ten times worse). The scary thing about this is that there is a very real possibility that Abby will tear the fundo stitches.

After many hours of this horrible retching and tears from Abby, we called the On Call Line for the GI Clinic and luckily, a doctor that has seen a lot of Abby was on call. He said that since Abby was retching for so long (which was every few minutes for hours), we needed to go directly to the ER out there in the dessert. Abby was very nauseated which was causing the retching and the retching also increased her nausea. It was a crazy cycle that we couldn't stop. The purpose for the ER trip was to give her some anti nausea medication (Zofran) in liquid form through an IV so it would work quickly. The docs also needed to check her stomach and feel for any fluid build up which would tell them that the fundo stitches had been ripped.

At 7:30 on Sunday night, we took a tour of the Eisenhower Hospital ER in Rancho Mirage. (It was super nice by the way....no joke) There is no pediatric unit out there, but they were great. They got the IV right in, gave her the Zofran, ran some blood work, and just like that, Abbers was out cold on mommys chest. We hung out for a few hours to make sure she wouldn't start up again and luckily she didn't.

It was not fun my friends. The idea that she could actually rip those stitches scared the junk out of us. Thinking about having to put Abby through that fundo surgery AGAIN makes my heart ache for her. I am so thankful she didn't tear them and everything is still in place. Today she is doing better. She is still needy and groggy and clumsy but she isn't retching and that's great.

So how do you like that? Just another day in the life of Abby. I'm thinking we're due for a nice break. I hope the next few posts throughout the holidays is filled with nothing but fun updates and pictures. I wouldn't mind a few prayers along those lines if you could. Pray that Abby has a nice Thanksgiving and a nice, calm Christmas.

We love you all!

2008-10-31T14:42:00.000-07:00

Hi everyone,

So this week started off a bit NUTS. At 10PM last Monday night, Kelly went in to check on Abby and our baby girl was having her second seizure. She was sitting up, her left side was twitching simultaneously again, and she was very out of sorts. Oh, and she was dripping with sweat, which means that she was probable seizing for quite some time.

Remember that the last time Abby had one of these, we were put in the hospital for a week. The only way we were allowed to leave without putting Abby on any anti seizure medication long term, was if we promised the doctor that if she did have another seizure, we wouldn't freak out. He said we would need to remain calm and be able to give Abby this emergency medication (it is actually valum) to stop the seizures....rectally. And immediately after giving her the meds we would have to call 911 to make sure that it stopped the seizure and that she didn't have a reaction to the medication itself.

And of course, Kelly did all of this. She gave Abby the medication and she called 911. That call got Kelly and Abby a ride to the hospital in an ambulance. Check it out...

The medication knocked Abby out which was good because she needed to rest. Once we arrived at the hospital, her blood was drawn to check for any infections and they placed a catherder to get a urine sample to test for a Urinary Tract Infection. It was no fun.

The blood draw was no picnic...let me tell you. The nurse didn't use numbing creme or anything AND she had to poke both hands to get enough blood. It was horrible because she also tried to put an IV in Abby after she barely got enough blood. Abby was no longer in her nice slumber at this point... she was SCREAMING! It was killing me.

Thankfully, all the tests came back negative and we were able to go home that night. And by night I mean at 3am. Abby was pretty awake by then too but still under the affects of the drugs. She didn't want to go to sleep when we got home. I think she was so overly tired and still out of sorts. Kelly tried numerous times to get her to sleep but to no avail so I ended up grabbing a pillow and a blanket and I slept on the floor by her crib to get her to fall asleep. It worked and Kelly woke me up shortly after Abby fell asleep and we finally got to bed ourselves at about 4:30 0r so.

The docs sent us home with a prescription for Keppra, which is an anti seizure medication. We were hoping to keep Abby off anything like this, but it seems that she needs something now. She is on a very low dose of it, which is good because the side effects of the medication are awful. It makes you dizzy and drowsy and very irritable. We're told that some patients get used to the medication and the side effects can wear off. We are praying that Abby is one of them. She is just not herself on it. It makes us really sad.

Alright then, on to some good news. Man, this is turning into another marathon post, huh? Anyway, Abby gained 1 and a half pounds since her fundo surgery! She is now at 21 and a half lbs. It's working team. Abby is keeping her food down, she's not throwing up to the point of dehydration when she gets sick and we have actually been increasing the amount of formula we give her at night, and she's been tolerating that as well. Woohoo....Abby the chunky monkey. I can't wait!

And finally, we did the Halloween thing of course. It was a great night in our neighborhood and we certainly enjoyed our little munchkins. Take a look at my slide show below.

slideshow - Powered by Smilebox" src="http://www.smilebox.com/globalImages/blogInstructions/blogLogoSmileboxSmall.gif" width=386>

Make a Smilebox slideshow

And that is it....I promise.

We love you all and hope you had a fun and safe Halloween.

-The Management

Germs Everywhere...

2008-10-17T18:48:00.000-07:00

What's going on out there?!

We have been sick sick sick over here. First Eddie got it, then Abby and then mommy. It's a terrible one too and while the worst is over for everyone, the runny noses and the coughing is lingering for the kids. This was Abby's first real cold after the fundo surgery. So here's the good news.... now that she has the fundo she cannot throw up. But wait...let's back up a bit. Here's how Abby's colds used to go. She gets sick, her nose gets runny and when she sleeps a bunch of snot and saliva collects in the back of her throat. And since our Abbers does not know how to handle all of that junk (ie "hock a loogie"), she would eventualy gag which in turn would turn into a full on throw up session. And after a few too many throw up sessions, we found ourselves in the ER because she was so dehydrated.
Okay...so back to the here and now. She's sick and everything is still the same as far as the snot and saliva accumulating and her having to gag it up. But now, the gagging doesn't turn into vomiting. Ironically though, the gagging now is much more fierce and sounds terrible. And here's the kicker...when Abby finally gets all that mucus and gunk out of her throat, she doesn't think to open her mouth and spit it out! So she swallows it and we're back to square one. This was how every night went all week this week and Kelly is exhausted. Not to mention she had to deal with her sick little kiddo's when SHE was super sick. And we all know how needy sick kids can be.
But then, it's no secret that Abby gets her "Rockstar" will and fight from her momma, so, in true Killer Girl fashion, Kelly powered through.

As far as Abby's eating goes....I'd say it's going slow and steady. The fundo is still pretty tight so it's hard for Abby to get food down into her tummy. I'm thinking this will take about 4 to 6 months or so before she can really start eating. As for now though, the exact same thing happens with her food that happens when she's sick. She gags on whatever she has swallowed and it comes back up. The good thing with the food though is that she does remember to open her mouth and let it out. And another good thing is Abby still likes the taste of food and she likes to try new things. By "try" I mean that she'll suck and chew on whatever we give her and then, of course, chipmunk it in her left cheek. We usually have to fish it out after a while. That's alright though. I'm just happy she likes to try new foods. A lot of times kiddos like Abby shut down on the eating all together because it causes more pain than anything. Personally, I think Abby watches her brother and does not want to be out done by him! Don't tell Abby, but I think that maybe, just maybe, Eddie has a slight lead in the eating department. See below...

"Ah yes...This is my favorite seat in the house."

So anyway, things are pretty much "normal" here at Casa De Gaya. There's always something going on! Oh wait, I'm not done. Kelly and I took Abby up to CHOC in LA for her foot / ankle brace consulation. We all know that Abby has difficulty with the left side of her body. I haven't mentioned this before, but the technical name for that is called hemiplegia. This brace will help Abby gain more balance and force her to foot make the correct kind of step. Right now, when Abby takes a step, she puts her left toes down first instead of her heal. She also tends to bend her foot so more pressure is on the outside. We need her foot to land heal first and for Abby to distribute her weight evenly instead of favoring one side. The brace is supposed to help all of this. It will be here in 3 weeks and yes...Kelly ordered it in PINK! Love it.

And now...some more pics of the lil Gaya's...

Here's Abby snacking on her favorite treat...chips! More specifically...Nacho Cheese Dorritos

Look at the doo! Bed head to the extreme! Hair everywhere!

Here are Abby and Mommy at the Laguna Hills High School football game

At 15 months, Eddie still doesn't have much hair and I didn't want him to feel alone.

Eddie found his calling

He was having a blast inside the kickers practice net

Abby was walking all over the place. This is her giggling at me as we were playing Chase Abby.

A lady that was taking pictures of the game with her super snazzy camera took a few of Eddie and me and then some of Abby when she was over by the cheerleaders...they are awesome!

Abby was loving the pom poms

Look at that smile!

Abby's New Blog Look!

2008-10-12T09:14:00.000-07:00

Hi Everyone,

I hope you all like the new blog look. It's become quite addicting so I will be messing around with a bit more. If you see something out of whack, that's only because I'm trying something new and have clearly not done it correctly! This is a definitely a "trial and error" situation.

It's been fun though and I hope you like it. I have some more projects to tackle this week so keep checking in.

By the way, Eddie and mommy are sick, but Abby and Daddy are holding strong. Abby went to a friends birthday party yesterday that had a bounce house. She LOVED it! She was falling all over the place and giggling and having a blast. It was fun to watch her, but then....it's ALWAYS fun to watch her.

Have a great Sunday Abby Addicts.

Abby and her new Fundo

2008-10-06T20:46:00.000-07:00

Hi guys,

Abby has been doing okay with the new fundo. She is still getting used to it and she gags and coughs and chokes a lot but it seems to be working. And by working, I mean she hasn't had any reflux or thrown up. But she does chipmunk her food still and since she gags so much on her food now, it seems like she is taking an extra long time to swallow the food that she chipmunks. Before the fundo, she would still chimpunk her food but she eventually swallowed it. Now, it takes FOREVER for her to swallow it. And what's worse, I am starting to find little spit ups of food on the floor. It's like when a kid (let's call this kid Eddie just for kicks) has to poop so he finds a section of the room where he can brace himself with something and then make a very intense face. Well, Abby finds a place, looks around with these huge eyes that say "I'm gagging" and then opens her mouth and lets the food fall out. The good news is that she knows to put her head down and open her mouth. Believe it or not, she didn't always do this when she gagged. She would actually put her head back, keep her mouth closed and....yep...you guessed it...swallow it again. Then she'd look at us and her face would say, "Oooooh... Nasty! Why did I just do that?!"

So anyway, it's going to take some time for Abby to get comfortable with the fundo and for all this gagging and everything to pass, but I am confident she'll get through it. She always does. In other news, she started therapy again today. Thank Goodness too because she has definitely taken a step back with her left side. She's falling all over the place still and her left hand, while better then a week ago, is still behind from where it used to be.

Now that the fundo is in, and Abby is back in therapy, I feel like we can actually think about the possibility that she will be able to have her G Tube removed some day. As Abby gets better with eating, we'll be able to slow down how much we feed her with the G Tube and then talk about taking it out. Woohoo! That will be soooooo cool.

So...let's pray that Abby learns how to eat without gagging so much and starts swallowing her food better.
You guys rock. Thanks for being there for us during her seizure scare and the fundo surgery. I will keep you posted on her progress with her eating.
Have a smashing week.

The Abby Daddy

Abby came home early!

2008-09-25T23:35:00.000-07:00

I have no idea how she did it team, but Kelly managed to convince the doc to let Abby come home....even though she was only at 35 cc's an hour. Remember, the goal was 50 cc's an hour! Even the nurse came in and said, "I have NO idea how you just pulled that off!" I love it. Leave it up to Kelly to get something like that done. Apparently Kelly listed all the reasons why they should go home, and she also listed why they should stay. But after each reason she brought up for staying, she quickly gave an answer as to how she would handle that at home. Hilarious. My wifeee, the Pediatric Doctor Negotiator.

Anywho, I'm beat so I'll keep this one short. Abby was at 35 cc's when we left today. She ate a good amount by mouth this afternoon and we put her to bed at 30 cc's. We figured, why push it? Good thing too, because even at 30 cc's she woke up and was very uncomfortable so we vented her (opened up her G Tube so any excess air would come out of her tummy and ease that bloated feeling). Even though we're home, we're still a bit nervous over here. The next couple of months will really be interesting. If all goes well, we will be able to start giving her a "normal" amount of formula. I just can't imagine setting Abby's G Tube pump to a "normal" rate each night. In fact, I have no idea how much volume would be considered normal because I've never had to deal with that. But it's possible and I'm very much looking forward to that and of course to watching our little Abbers get chunky.

Good night friends.

Pops

Slow and Steady

2008-09-24T21:22:00.000-07:00

So what do you get when you take a little girl who hasn't had a thing to eat or drink for 5 days and then give her an entire sugar filled juice box? You get a party girl! That's right, Abby kept mommy up until 5AM this morning! She may have dozed off for an hour between 11PM and 5AM but that's it. Kelly was nice enough to let me sleep and toughed it out with Abby alone. And since we have a roommate there at CHOC, Kelly didn't want to just let Abby cry it out, so she entertained Abby the entire night.

As far as Abby goes and her progress, she seems to be moving forward slow and steady. We kept her on 10 cc's of formula today and then bumped her to 15 cc's. We are going to increase her feeding by 5 cc's every 6 hours until we get to 50. She also took a little bit of yogurt today and couple sips of a milk shake too. Basically, we're looking to go home no earlier than Saturday.

Abby's spirits are better however she is still very needy. It's extremely difficult to keep her entertained ALL DAY in that little crib / bed thing she is in. Abby is not one to just sit around. Her feeding therapist Karin stopped in today and she and Kelly took Abby on a walk around the 5th floor. This was a nice break for Abby, but it's a difficult thing to do since Karin and Kelly had to walk Abby with an IV pole and tubes all over the place.

Say some prayers for momma as well as Abby. I love my girls so much and they both continue to amaze me. This hospital stay is dragging on and it's time to get the family back home. Kelly's stamina for this stuff is off the charts. Eddie and I miss our girls very much tonight and are looking forward to seeing them tomorrow.

Man I hope Abby does okay with those feeding increases tonight!

Here is a shot of Abby right after she woke up. Love the hair. The net on her left hand is to protect the IV. The tube attached to skinny cup thing in front of her is actually her G Tube and that cup is what we were using to catch any fluid that was coming out of her stomach a couple of days ago.

Here's momma and Abby on the Super comfy fold out bed that we get to sleep on.

Abby is not one for snuggling too much, unless she is really tired or sick. In this picture, she's both.

Momma tried to go to sleep but since Abby wasn't tired she would poke momma's nose, or her eyes or her cheek. Needless to say, momma isn't sleeping much these days.

Here are a couple as Abby started to feel better. She loves to put my hat on like this and see the world through mesh.

I have no idea what she's grabbing for here. Probably my camera...no dice sister.

This is the face she makes when I say, "Abby, show me your teeth!" Again...love the hair.

2008-09-23T21:19:00.000-07:00

Hi Everyone,

So...as I thought, Abby reminded us that she was on her own schedule. Yesterday, we started her giving her 10 cc's of pedialyte through her G Tube for 2 hours and then we bumped her up to 20 cc's. It was at 20 cc's that she started gagging, refluxing and feeling nauseated. Eventually we stopped feeding her all together. It was very discouraging, but we held out for what today would bring.

Thankfully, Abby had a better day today. The docs decided to start feeding 10 cc's of formula per hour through her G Tube. As I mentioned above, yesterday we started out with pedialyte but this time they went with the formula which has more nutrients and calories, so that's good. But it's still on 10 cc's an hour. That's nothing. Just to give you an idea of how little that is, 30 cc's equals 1 ounce. You know those super small juice boxes? Not the regular size ones, the really really small ones? Well, those are 125 cc's. That means that it would take Abby 12 and a half hours to finish that tiny juice box at the rate shes going. But! She also drank an ENTIRE juice box today! In fact, after that juice box, we opened another one an hour or so later and she drank half of that one. It was awesome. She has NEVER done that before.

As I type this she is asleep and hooked up to her pump. We're still only at 10 cc's of formula, but that's alright. Last night she wasn't on a pump at all, so this is an improvement. Tomorrow we hope we can increase her pump volume to 20 cc's an hour (and maybe more?). Remember, we need to be at 50 cc's before we can come home.

We love you guys. Let's pray for 50 cc's!!!

Having a Good Morning

2008-09-22T11:40:00.001-07:00

Alright Abby Addicts,

Things are definitely looking better. Last night, some friends of mine from church came over to say a prayer and give Abby a blessing. It was a fantastic blessing and it certainly worked. Abby slept through the night with the exception of a 3 AM gagging and retching episode. That lasted about an hour and then she fell asleep until around 7AM or so.
Right now she is not on any Morphine or Toradol AND she's napping! However, we have a lot to tackle in the next week. To go home, Abby needs to tolerate 50 cc's of formula an hour, and this is the plan to get her there:
Right now she is getting 10 cc's of pedialyte an hour through her G Tube. If she does well with that, we'll bump her up to 20 cc's of pedialyte for the following 2 hours. Assuming that's no problem, we will then give her 20 cc's of the Pepatmen Junior Formula. It's what we've been giving her at home and this ain't no "over the counter" kind of stuff people. It's the Mercedes Benz of formulas. By that I mean that it's hard to make and is especially for kiddos that have very sensitive stomachs and have bad reflux issues like Abby.
Anyway, as long as she does okay on the Peptamen for 24 hours, we'll slowly increase her dose from there. And by slowly, we're talking like 10 to 20 cc's a day. Not per hour...per day, which means we'll be at Camp CHOC til Friday or Saturday. And this is if everything goes as planned.

Thank you all for checking in. I know that all of the prayers and incredible support from you guys have been working. Abby has always taken her sweet time to get better, and yet, the difference between today and yesterday is unbelievable. I got crazy love over here for all the Abby Fans out there. If there was ever a story to testify to the power of faith and prayer, it's hers.She's is our little Miracle!

Speaking of miracles, for those of you that don't take the 55 South too much between Mcfadden and MacArthur, there's a billboard where CHOC has an add that reads, "Chances are, there's CHOC miracle in the car next to you." I love that sign. As I drove by it the other day, and tears welled up as I thought about Abby and the road she's been on(Okay fine. They didn't well up. They poured). I get this way everytime I reflect on those days, weeks, and months and especially when I think about the support we and Abby have had. I have absolutely no idea how we could be going through this journey without you guys.
And so continue the prayer requests. Pray that Abby's little tummy accepts the fluids today and especially the formula. Abby has never been a fan of following the rules, but let's hope this time she does.

-Abby's Daddy

2008-09-21T23:55:00.000-07:00

hello all....it's momma this time (daddy is pooped),

Well today was a really rough day. Abby has continued to throw up her saliva and has started to retch and gag a lot more. (retching is like dry heaving) Today she was only throwing up every hour or so which is an improvement from yesterday. She is still in a lot of pain, which is SO HARD to see. (She's still on morhpine along with another painkiller and anti inflammatory that they have added called Toradol.) That's our baby and we are completely helpless. It's awful.

She is just absolutely exhausted since she hasn't gotten more than an hour and a half stint of sleep at one time since she had surgery Friday morning. Nor has she had anything to eat or drink. We did not start fluids today like we had hoped. The docs said that as long as she continues to vomit, they can not start any fluids. And if we don't get some food in her soon, they will have to do another surgery to put in a central line. Kind of like an IV, but for intravenous feeding. We hope and pray it doesn't come to that.

We are also concerned about all of the retching and gagging. If that continues it could tear and rip apart all of the stitches from the surgery, making all of this for nothing. Then another surgery would have to be done and the percentage of a successful second surgery is much less and continues to get less and less with each revision.

And on top of all of that, her IV went bad already, so tonight they had to take it out and place a whole new one. Never fun.

I wish that I had better news to report. We are praying hard that tomorrow shows more promise. Our Abbygirl has gone through SOOOO much already. We are ready for her to catch that break that she is SOOO due for.

Thanks for all of the love, support and prayers. You have no idea what it means to us. It is what helps us be able to endure it all. We love you

Some progress but still have a long way....

2008-09-21T07:40:00.001-07:00

Good Morning Abby Fans,

After my post yesterday, things didn't seem to get much better. It was obvious that Abby's saliva wasn't getting into her stomach because of the inflamation from the surgery, because she was still throwing it all up every 30 minutes. And with the throw up came the use of her stomach muscles which caused A LOT of pain and so came the cry's for help. Man was that rough. Abby has a pretty high tolerance for pain, and doesn't cry very often when she falls or anything. So when those big brown eyes stare into you with that look of sincere pain and distress and the tears falling down, you know that our Abstar is in some serious pain. Thankfully, the morphine gave her some relief and allowed her to sleep a bit. We could get her to sleep about 45 minutes to an hour before the saliva would build up and she would have to throw it up again.

Abby still has her G Tube in and that is actually helping the situation. A lot of pain is associated with bloating and air getting trapped in the stomach during the recovery of a fundo surgery, and since Abby has her G Tube, we can literally open up her tummy and let the air out. In fact, right now the G Tube is constantly open and attached to a little clear cup. This allows us to see if any of that saliva is actually getting down to her tummy. Unfortunately, that cup was dry all day. No saliva was passing through....until around 5PM or so. And then some more came, and then some more! Woohoo! The inflamation was going down. Abby's path from her throat to her tummy was opening up. Nice! Can we go home now? Um....lemme think about that one for a sec....NO. Seriously, did you really think an Abby story would be that easy? Of course there's more to come. Before we go home, we need Abby to start taking fluids by mouth first and then be able to tolerate food a day or two after that. Hopefully we'll start the fluids today. We also need to make sure she's not in too much pain. And most importantly, we need to make sure Abby's pain is under control. Lately she has been dry heaving which is even MORE painful than before. The docs told us to plan on being her around 4 to 5 days. The 5 day mark is Tuesday. I don't remember the last time Abby has gone home within the time frame that the docs say during the pre-op consultation. If she does that...it will be a first.

Say a prayer that Abby will be able to take some fluids by mouth today.

Have a great Sunday everyone.

Abby is still not doing well....

2008-09-20T06:24:00.000-07:00

It's 6:30 right now on Saturday Morning. Kelly and I have had a rough night. Abby has continued to throw up her saliva. She's done it well over 20 times. She hates to do it too and tries so hard not to, but eventually it all builds up in her little mouth and she's forced to spit it out. It's not really even a spit, but at this point, her mouth is so full that she just opens it, gags and it just pours out. Spitting it out would actually be an option I suppose, but don't forget that Abby doesn't know how to spit because she hasn't learned how to fully use the muscles in her mouth. So when all of this saliva accumulates, she has no idea how to handle it, other than to gag and retch.

What gives? We got this fundo so that nothing would come back up, but now our problem is that nothing is getting into her stomach at all. Huh? Of course we asked our nurse this question who in turn paged the on call doc. We were told that the passage way from her esophagus to her stomach may very well be blocked right now because of the swelling from the surgery. Well isn't that just swell. So I'm thinking, when we got the whole "what to expect in recovery" low down from the docs, this would have been a good tip to let us in on....don't ya think? I mean....throw us a stinkin' bone here. That was a good answer actually and much better than what was running through our heads. Since nobody threw us the forementioned bone, Kelly and I were sitting here thinking the worst....which was that the stitches from the fundo surgery were torn or something.

(For the record, my sarcasm is to be taken lightly. We have nothing but love and respect for the docs and nurses and the care we've gotten here)

Anyway, the swelling should go down after a day or two. In the meantime, she is getting Morphine every three hours to help her rest, but she is still very very uncomfortable and in pain.

So keep the prayers going friends. We're praying for the swelling to go down and a quick recovery. We hate, absolutely hate seeing her in pain and we just want her back home as soon as possible.

-Abby's Management

As of 5:30PM on Friday....

2008-09-19T14:19:00.001-07:00

Well, we're up in the recovery room here at CHOC and Abby is in a lot of pain and she is very nauseous. She is always nauseated from the anaesthesia after her surgeries and usually collects a lot of saliva and phlem in her tummy and then throws it up. Since she got this fundo, we were thinking she wouldn't throw up anymore, but Abby has already thrown up a mouthful of phlem and saliva 8 times. We're told that this is normal, even though the fundo is supposed to keep things down, but it is still a worry. Our concern is all the stories we've heard about kiddos retching so much that they tear the stitches inside that are keeping the Fundo together. I don't think this is going to happen, but what do I know about Fundo's? And since I'm not Mr. Fundo Expert, everything is going to worry us. She is on a lot of Morphine right now which is keeping her pretty much zonked out, and she's also getting some Zofran too for her nausea.

This recovery is going to be No Bueno.

The surgery went well!

2008-09-19T14:19:00.000-07:00

Woohoo!

The docs didn't have to move Abby's G Tube! The Fundo is now in place and as I type this we're waiting for the nurse to come get us so we can see Abby. We should only be in the hospital about 5 days or so...as opposed to being here for 2 weeks!
We did learn that Abby did have a Hiatal Hernia....whatever that is. To quote her surgeon, "it was a big mess in there, but I cleaned it all up." There was a lot of scare tissue and adhesions that he took care of. For the record, I have no clue what I just said. I'm just repeating what the surgeon said. Who cares though. The good news is that Abby is still batting a thousand and continues to be our little Rockstar.

With all that said though, let's keep the prayers going during her recovery. A fundo is no joke and it takes a while to recover. How long Abby is here depends on how well she handles food in her tummy.

Ooohhhh! The nurse is here!

More later

2008-09-19T07:21:00.000-07:00

Well, today is the day everyone.

You know, Abby has been doing great with her communication lately. She now says "yeah" and she can tell what kitty says, a cow says and some others. She also knows to point to her boo boo's and if something is hurting her. And ever since she has learned this, we find her constantly pointing to her throat. The reflux she goes through every day as a result of not having that sphyncter must be annoying and painful. In the picture below, Abby was in her high chair pointing to her throat to tell me it was hurting....

I've been very much "on the fence" about this surgery as far as if she really needs it, but watching her grab at her neck a lot and point to it as much as she does has sealed the deal. Now we just need to pray that the docs won't need to move her G Tube today while performing the fundo surgery. As I have mentioned, if that happens, our hospital recovery time (and the discomfort and pain for Abby) will pretty much double.

Other than this crazy surgery today, Abby has been doing absolutely fantastic. That actually makes it harder to bring her in today. It's one thing if she's already sick and feeling crummy but to bring her in when she's happy and cute is rough. She has no idea that she's about to go through a very difficult surgery today and it breaks my heart. But this is Abby we're talking about here, and I know she can deal.

Check out these fun of Eddie below....That little guy is getting into EVERYTHING THESE DAYS!

I love you all and keep Abby in those prayers today.

An Abby Fan Needs Abby Power!

2008-09-16T14:46:00.001-07:00

Hi All,

One of Abby's BIGGEST fans, Carmen, has ran into a bit of trouble and needs your prayers. At only 34 years old our sweet Carmecita found out she had a rare blood disease, Takausu, which, among other things constricts the arteries to the heart. So...Carmen needed a double bypass heart surgery. Unfortunately, after the surgery, Carmen had a stroke and is now in the ICU at Kaiser. Her husband Albert (Bert) and Carmen's family are all hanging in there, but I thought it would be cool for some fellow Abby Fans to log onto Carmen's blog to leave some kind words for her and for Bert. Bert is holding on to these comments with both hands, just like we did during those first days, weeks and months with the Abbers. It was always cool to see comments from people we didn't know as well so even if you don't know Carmen, post away. I know Bert will love it.

www.carmenpluma.blogspot.com

PS - The surgery for Abby is still on for this Friday and I'll keep you all posted on that. Pray like mad that all the docs have to do is the Fundo and that they don't have to mess with her G Tube.

I love you guys.

Abby's Fundo surgery is back on

2008-09-08T12:27:00.000-07:00

Hey gang,

I just wanted to let you all know that Abby's Fundo surgery has been re scheduled for, Friday, the 19th of this month.

I have some great pics of Abby trying on mommy's hat while she was in the hospital which I will post later today or tomorrow.

Take care,

Ryan

Abby is home!

2008-08-31T08:41:00.000-07:00

Happy Labor Day everyone. I am extremely happy to say that we are FINALLY home with Abby. We got home Sunday afternoon to make our stay a total of 5 days! It was a good thing we were there on Sunday though because we got to speak with a neurologist that that we heard was great. Nobody can pronounce his last name, so everyone just calls him Dr. E. We had a lot of questions for Dr. E about Abby, especially regarding her seizure medication. Did we absolutely have to keep her on the anti seizure medication she had been getting during the past few days? Our goal was to keep Abby off any medication if possible. I don't think I've spoken too much about medication and Abby, but given her history with her brain bleeds, her shunt, her feeding tube and all of that, it's INCREDIBLE that she is not on any medication thus far. Kelly and I know in our hearts that her little fighting spirit is the driving force behind this, which is why we were reluctant to just put her on this anti seizure medication full time. The stuff was making her dizzy, and sleepy and just not herself. There is no question that it would be difficult for her fighting spirit to shine through and do what it needs to do if she were to continue this medication.

So what's the big deal you ask? Why not just take her off the seizure meds and go home? After all, it is just the first seizure, right? Unfortunately it ain't that easy friends. It's like this: Abby had a seizure at the same time she spiked a huge fever. We found out that the fever came from a Urinary Tract Infection (UTI). Fevers can cause seizures, but because of Abby's neurological history, she is prone to having seizures so the docs were not ready to say that the seizure only happened because of the fever and call it a day. Okay, fine. I'm on board with that, but why now? She's 2 years and 4 months old. Why didn't she have a seizure before? Apparently, kiddos with neuro issues like Abby can start having seizures at any time. Some will go seizure free for years and then start having them for any number of reasons. Whatever triggers the seizures is different for each kiddo. It's very likely that Abbys fever did trigger the seizure, but there's no guarantee that something else won't trigger another seizure in the future. This is why one neurologist (we saw two) said it would be a good idea to put Abby on the meds now. But Kelly and I were adamant about giving Abby every opportunity to be medication free. Look, we're not ignorant to the fact that she is prone to seizures and that she may in fact need meds down the road. But we would be kicking ourselves if we didn't at least give Abby a chance.

Thankfully, Dr. E agreed with us! He sat with us for an entire hour, answered all of our questions and was on board to let us take her off the meds. Woohoo! No meds for Abby! The only catch was that he did want to send us home with emergency anti seizure medication that is a suppository. He made it very clear that as parents, we must have good nerves, keep our cool and be able to give this medication to Abby while she is seizing. Well, this just happens to be Kelly's specialty so we're good there.

Oh, by the way...we got the results back from the EEG and were told that there was some abnormal activity but it wasn't seizure activity. Huh? Abnormal activity but it wasn't seizure activity? What does that mean? I don't think I really got an answer on that. What we did learn though was that it's better to get one or two more EEG's done on Abby in order to really use this information. For example, if we got an EEG done in a couple of months during a time when there was no seizure stuff going on, but we still found the same "abnormal activity" we would then know that this is just Abby's normal activity. If we don't find the same "abnormal activity" then we'll know that what we saw this past weekend was in fact seizure related activity. Gggggrrreeeaaaaat.... You all saw the pics of Abby hooked up to those wires. Did she look like she was having fun to you? And we get to do that again? Nice. All I know is that Abby's been dancing to her own tune since she got here, so as far as I'm concerned, Abnormal is just short for Abby Normal.

So let's see, what else? Oh yeah. The medication she was on to fight the UTI actually gave her diarrhea, which is bad news for the Abby Girl. You guys remember what happened the last time she got bad diarrhea? That's right, since she doesn't drink very much and can't tolerate very much fluid at one time through her GJ Tube, she got super dehydrated and we spent some time in the hospital because of it. Thankfully we were still able to get her home and we seem to be getting that situation under control.

Well. I think that's it. This concludes yet another incredible fight with Abby in the red corner and The Odds in the blue corner. After a respectable effort by her opponent, Abby has once again beaten The Odds. Nice work Little Miss Magic. Now get some sleep. You got another big fight coming up and you need your rest.

Man I love her.

More on Abby...

2008-08-28T19:48:00.000-07:00

Okay,
So I realized I made an error in my previous entry. I said that Abby's docs thought that maybe Abby was having a "feveral seizure" when in fact it's called a "febrile seizure." Ooops. What can I say? I was super tired. All of you that are in the medical field must have gotten a good laugh from that one. Anyway, we got more info from the docs on febrile seizures and it doesn't look like that is what Abby had. A febrile seizure can only last up to 15 minutes and Abby's lasted for 2 and a half hours. Also, it seems that febrile seizures only happens to children without any neuro issues. For more info on febrile seizures, click here. We learned instead that Abby had a Simple Partial Seizure. Take a look at that link as it perfectly describes what happened to Abby.

In an effort to figure out why Abby had a seizure and how prone she is to having one again, she got an EEG. An EEG records brain wave activity. This will give the docs information that will help them figure out more about Abby and how much seizures will be a part of her life. It is very important that the patient stay still during the EEG (which took about 20 minutes) and luckily, Abby was exhausted so after the electrodes were placed on Abby's head, she fell asleep. But the moments leading up to that were no fun. Take a look at the pics below.

Abby is NOT happy about the paste they were putting on her head to keep the electrodes on...

She was even more unhappy about the wrap they put on her to keep the electrodes in place....

She wasn't THAT upset though. A few moments later, our little Abbers was conked out and had a great nap.

As far as the fundo surgery is concerned, it's definitely on hold for now. Once Abby starts feeling better and we get some answers from the EEG and the seizure question, we hope to get Abby home.

I am home with Eddie right now, but I just spoke with Kelly and Abby is feeling a lot better. She had another nap which was about 3 hours and even went for a little walk around the halls. It was a bit much she said though, and now Abby is a little cranky and needs to go to sleep again.

Eddie by the way also spiked a fever last night around 2AM. The poor little guy had about a 101 degree temp. He's doing much better tonight thankfully but still not 100%. I think he got what Abby got. Tonight he ran into Abby's room a couple of times and looked around as if to see if Abby and mommy were in there. He misses them and I do too, so let's all pray and hope that Abby can come home tomorrow or Saturday.

I will let you all know the results of that EEG and what we can expect with regards to seizures as soon as I know something.

Love you all.

- Abby's Management

Curve Ball!

2008-08-27T21:15:00.000-07:00

Abby woke up at 9AM today and the entire left side of her body was flexed and twitching and even her head was turned to the left. She couldn't focus her eyes on Kelly and she was even grabbing her left arm with her right hand in an effort to stop it from shaking. Abby was having a seizure. What? A Seizure? But aren't seizures quick? Abby's twitching was continuous and wouldn't stop. Kelly called me in tears to let me know what was going on, grabbed Eddie, still in his pj's, and headed to Abby's pediatrician. Yep - Abby was indeed having a seizure and Kelly was asked to bring Abby straight to the ER. They gave her Ativan which really helped. The left side of her body finally relaxed, and the twitching stopped. Needless to say, Abby was exhausted from the 2 and half hour long seizure. We were admitted to CHOC and were asked to stay the night.
So....WHY IS ABBY HAVING SEIZURES???? We know that it is common for Cerebral Palsy kids to have seizures, and we were happy that Abby was fortunate enough to escape these. So why now? Well, there are a couple of possibilities. The first thought that Kelly and I had was of course the worst possible scenario, which is that her shunt could be clogged and/or her CSF, Cerebral Spinal Fluid could be infected. Thankfully, after reviewing the CAT Scan that was done on Abby in the ER, the docs concluded that the shunt was not infected. In fact, Abby's neurologist said it the best CAT Scan he's seen on Abby yet. And when he took a sample of the CSF, it wasn't cloudy (which indicates infection) but instead it was nice and clear. We'll know for sure if the CSF is infected tomorrow (Thursday), but Abby's doc is saying there is a 99% chance that it is NOT infected.

This is all good news but we still don't know why Abby was seizing. Her neurologist said that it's possible that Abby was having a feveral seizure, which is a seizure caused because Abby is getting really sick. He's not sure on that though and will have more answers (hopefully) for us as time goes on. Sure enough though, Abby spiked a fever after we got to the ER and has been vomiting and dry heaving all day long. So tonight the goal is to pump Abby full of broad scope antibiotics in case the CSF is infected and we also need to curb all of her nausea and vomiting.

And of course, the million dollar question is...what does this mean for the surgery on Friday? It is most likely going to be postponed. Abby just cannot be sick during the surgery and since she's so sick right now, it's not likely she will get healthy enough for a surgery in two days.

So that's the curve ball. But with all the prayers and faith that Team Abby generates, I'm sure she'll get through it. She's our little Rockstar and she always pulls through. Abby's momma is also a rockstar. I showed up to the ER and didn't get a chance to see Abby twitching and seizing but that's got to be a scary sight for any parent to go through. And thank Goodness for Kelly's parents. Cindy and Cliff, you guys rock too. They have been by Kelly's side to help with Abby and Eddie since the appointment with the pediatrician this morning. Thanks guys! We love you!

Alright then my friends, this is your cue. You guys know what to do next.

Ryan

This Friday is Surgery Day

2008-08-25T01:00:00.000-07:00

Hey Team,

The last couple of weeks have been great. Abby is doing fantastic, Eddie is growing like a weed, and we have been going to the beach and the pool as much as possible. Abby is doing really well with her eating. She is quite the snacker these days and is often asking to try bites of whatever it is we're eating. Eddie...well... he is not so much a snacker as he is a vacume. The kid will try anything, but make no mistake. He'll spit it right out if he's not into it. Abby is very much into music. I'm not sure if I've mentioned this before but it's been going on for a while. When she hears a song she likes, she throws her right hand up and shakes it around in the air. The most recent addition to her dance moves is this bounce she does where she bends her knees and everything! And going back to what we all know the docs said we could expect from our little Abby, we all know that this is just one more little miracle! Need less to say I was in tears and so was Kelly...and my sister...and pretty much everyone else who saw her do this.

This Friday is the surgery for the fundo. For those of you who have forgotten what a fundo is, why Abby needs it and all the issues that go along with this surgery, scroll down to my previous blog entry and read on. (Man, I really got after it last time huh?) The surgery will be at approximately 10AM on Friday. I will do an update from my blackberry as soon as it's over to let you all know how it went.

Thanks....yet again....Abby Fans, for all of your continued love and support for our little girl. Thanks to those people gathering around a computer at work to check in on her and enjoy the latest pics, and to our old friends whom we haven't spoken to in years but still take the time to keep on on Abbers, and then of course to the people who have just come across this blog somehow and got bit by the Abby Bug like the rest of us and have stayed on ever since. However you came upon this story, thanks for staying with it. It means the world to us and we love you for it.

And now...take a look at Eddie giving Abby not one, not two, but multiple kisses!

A BIG Surgery is Coming Up

2008-08-03T09:34:00.000-07:00

As always, a lot has been going on here at Camp Abby. But before I jump into all of that, let me first say that Abby and Eddie are both walking! They are both at the beginning stages and they look like a couple of drunken sailors at sea. It is a very funny sight. Eddie has done a lot for Abby. Just by doing what he's doing, Abby is doing her best not to be outdone by little brother and is working very hard to keep in front of him. As he is starting to walk more, so is she. And as he is getting better at climbing up on things, or throwing a ball, Abby is right there, practicing the same thing. It is such an amazing thing to watch her do all of these things! The girl that wasn't supposed to do hardly ANYTHING, let alone walk and play!!!! Wooohooo!!!! Anyway, now that Eddie is bigger than Abby (Eddie is 22 lbs, Abby is still at 20 lbs) he is starting to throw his weight around. We have this little push car toy that they love and when Eddie wants it, well he just cruises right over, pushes Abby off and takes over. Abby is not a happy camper when this happens and it becomes your normal sibling rivalry spat over a toy. Oddly enough, this spat is music to our ears! We do have a pretty big surgery coming up though so let me get to that.

About 3 weeks ago, we all went to a park on a Saturday afternoon to enjoy Abby's friend Tavi's 3rd birthday party. It was a great party and everything seemed fine. But on our way home, Abby started throwing up, and I mean throwing up. She was dry heaving like we have never heard or seen before. As a result of all this vomiting, she was extremely thirsty and would drink a lot of water, but it would all come up again. It didn't take us too long before we decided to call the doctor and he told us to go to the ER before she gets too dehydrated. Luckily we got her there early enough and our stay was only 7 hours, which was all the time the docs needed to get an IV in her and fill her up with some fluids to rehydrate her.
Seriously though, all these ER visits, the constant throwing up in the middle of the night, the sudden dry heaving spells like the one I just mentioned, and the pain Abby is always in has got to end! And it needs to end soon. Thankfully there has been a plan in place to help Abby with all of her vomiting, and this little ER visit just shifted that plan into high gear.

Let me break it down it into 3 parts. What's wrong? What's the plan to fix it? How long is the recovery?

What's Wrong?
I think I mentioned before that we know why Abby is constantly throwing up, but for you newbies, let me explain it again. It's like this: You and I have a sphincter at the bottom of our esophagus called the Lower Esophagial Sphincter or LES. This LES opens when food goes down our esophagus and into our stomach and then closes up. Thank Goodness it closes up, because if it didn't, we would throw everything that we ate right back up. Well, that's Abby's problem. She does not have an LES at all. This is why every time we tried to feed her large volumes of food she would throw up. Sure...she can snack here and there and have some cheese puffs, or crackers or whatever, but only in small bites. She can't even come close to eating the amount she needs to eat to give her enough nutrition throughout the day. And by this point, her poor esophagus is really scared from all of the acidic vomit that comes up. It's an absolute miracle that she still likes to eat food. She has a little bit of "oral aversion" which is basically a child's fear or unwillingness to put anything in his or her mouth. If anybody should have oral aversion, it's Abby, but she doesn't.

What's the plan to fix it?
When somebody doesn't have an LES, the plan is to do a fundoplication, commonly called a fundo. This is where the docs will take a part of Abby's stomach and wrap it around her esophagus and make their own LES. Take a look at the following link. It acually has a pretty good diagram and description of the fundoplication procedure. Fundo

How long is the recovery?
Here's the crazy part. Abby will be in the hospital anywhere from 5 days to two weeks. And we won't know just how long until AFTER the surgery because there are so many unkowns about how this surgery will go. First, Abby has a VP Shunt . The shunt (for those of you that didn't click on the link) is there to drain the Cerbral Spinal Fluid from Abby's brain area. It's a catheter that goes into her head and a small tube is attached to it that goes down into her abdomen to drain out. You and I have a little "drain" at the bottom of our skull that allows this fluid to drain down to our spine. Abby's "drain" was clogged at birth when she had her Grade IV brain hemorrhage. This link will explain the hemorrhage more. Anywho, when we do a surgery that is anywhere close to the shunt tube, there is always a concern regarding an infection getting inside the shunt tube, because that means the infection would travel to Abby's head and we would have an entirely new set of problems (huge problems) on our hands.
The other issue is that Abby has a GJ Tube. (Am I getting nuts with these links or what?!) There is a possibility that the doc won't be able to do what he needs to do without taking the GJ Tube out and then re inserting it somewhere else. This would mean that the surgery would no longer be done laparoscopically. Instead Abby would be cut open and have a new GJ Tube placement PLUS a Fundo to recover from. This is the scenario we are REALLY hope doesn't happen. We do not want to have to remove the GJ Tube.
Assuming the GJ Tube is fine, the recovery is about 3 weeks or so before she'll be somewhat used to the fundo. Oh...something I forgot to mention about this fantabulous fundo is that Abby will never be able to throw up again. So if she gets food poisoning or something that requires her to vomit, she won't be able to. It will have to pass through her system the other way. This is no bueno AT ALL but we don't have a choice.

So the prayers will REALLY need to get kicked into high gear and I will certainly keep you all posted. The surgery date is the 29th of August. Put it on your calendar!

We sure love you all and appreciate everyone hanging in there with us. This next hurdle is a big one, so go get some rest. Anybody out there that doesn't pray very much, start practicing now. We're going to need all you got at the end of August. We really really really need this Fundo surgery to go well.

As for now, just enjoy the pics! Thanks again Abby Fans.

Yeahhhh!!! A Beach Day!

Eddie loves running around the wet sand

So does Abby...

Our first time at the Orange County Fair! Abby and Eddie had a blast poking their heads through these things!

Eddie and Momma with the little chicks

Abby squirmed out of my arms to make her way back to the cage with the little chicks in it...

Here we are at the petting zoo. At first they were both a bit apprehensive, but not for long...!

Eddie just went for it and then Abby quickly followed. From here on out, they were totally into petting the animals.

More Petting Zoo...

Abby just couldn't get enough

Check out Abby on her 1st horsey ride! Parents weren't allowed to go into the arena. We were sure Abby would be scared....nope! She was having a great time cruising around on it. She got strapped in tight and off she went. All by herself!

More of Abby on the horsey

Eddie and Daddy on the Bull!

Abby and Momma on Abby's 1st roller coaster ride

Here they are after the ride was over. Abby love it! She wanted more more more!

Abby with her friends!

Here's Eddie chillin' at the pool on the 4th with Daddy's hat on

Family Photo at Dusk on the 4th of July - Check out the sunset

Eddie and Momma watching 4th of July Fireworks... Eddie was NOT very happy about all the noise they made. Eventually he got used to it though.

Abby & Eddie at Eddie's 1st Birthday Party

Eddie couldn't be contained! He was having a GREAT day!

Here is Eddie taking a swing at his very first pinata!

Abby site is under construction

2008-06-24T21:31:00.000-07:00

Hey Team,

Sorry about all the funkiness on Abby's site lately. I am trying to get it all handled and will have it looking all snazzy and ready for comments again soon.

Abby is doing GREAT BY THE WAY! She is a walking machine. I have some video of her that I took from my camera so I will get that up as well.

Take care everyone.

-Abby's IT Department

Surgery went well

2008-06-19T21:28:00.000-07:00

Hey gang,

Really quickly, I just wanted to give everyone the update that the surgery went well. It took less than an hour and she was out an hour after that. By this evening, she was acting like she didn't even have a surgrey. I do need to say that my diagnosis as to how she got them was way off. I heard Kelly say that whole car seat thing, but that was just her theory at first. it wasan't what the doctor said like I had thought. Oops! I guess she just had these since birth apparently.

Anyway, I will check in soon with some more pics.

Did I mention that Abby can now stand up all by herself? Before she needed someones leg, or a chair or the wall to support her as she stood up....but not anymore!

Abby is going to be in the newspaper!

2008-06-17T20:36:00.000-07:00

That's Right Abby Fans,

Our Li'l Abbylicious has gone and increased her fan base even more. She will be in The Wednesday, June 18th, 2008 edition of the Orange County Register. Man, our little munchkin has a knack for this stuff, doesn't she?
So how did this all come about? It's like this; Abby's acupuncturist Dr. Ruth McCarty works with CHOC on top of running a very successful practice in Aliso Viejo. One day, she got a call from a friend of hers that works in the PR Department at CHOC and they start talking about Abby. And if I'm not mistaken, this particular lady had recently spoken with Greg (the writer of the article for the OC Register) and decided to call him to tell him about Abby. He then reached out to Ruth who set up the interview.

As you all know, my goal and major incentive for keeping this blog going has always been to try and make our story one of hope and love with the intention that it's heard by families in our similar situation. Greg and the OC Register have done a great job at helping us out in that regard and for that we are very thankful. The title of the article is "The Triplet who survived is a tiny, surprising fighter" Pick up a copy of the OC Register on Wed., or click this link here and check it out.

Here are some pics of when Greg came over to learn Abby's story.

So on to the update: Abby is doing great. She is really starting to walk everywhere now! She still uses the wall for support a lot and likes to grab the hand of whoever is nearby to help walk her around. When nobody is there she manages to take a few steps on her own from one chair to the next, or from the ottoman to the couch. If nothing is there she'll test out a few steps and then plop down on her bum. She is still very inquisitive too. She is all about figuring out the clip on her high chair safety belt for example. She will sit there for literally 30 minutes sometimes and try to get it undone. I have encouraged this in an effort to support her curiosity...but it backfired. She figured it out! So now I can't just leave her in her high chair and feel comfortable that she won't ACTUALLY undo her safety belt. That little stinker can unclip the thing. (I'm secretly super proud of her though!)

She also opens and closes doors again and again and again, she likes to draw (or scribble), and she loves to do her best to push Eddie around a bit. He still loves her, but he's starting to stand his ground so it will be fun to watch that situation progress.

On Thursday morning, Abby is onto surgery number....uh....15? 16? Ahhh who cares. Anywho, it's a surgery to get rid of a hernia. She got the hernia over months and months of car rides. How's that you ask? Well, when Abby is strapped in, she arches her back and grunts in an effort to break through the straps and free herself from the car seat. Yes, it sounds cute at first, but after doing this a gazillion times, she gave herself a hernia. Nice!

There are actually some more things on the horizon as far as surgeries go... but this update has gone on too long and you guys just want some pics.

Alright alright. I have a few new ones...

2008-06-06T07:39:00.000-07:00

Hello From Abby Town,

Today Abby has a surgery. Nothing too major. She needs to get her GJ Tube replaced. This one only lasted 3 months and it already broke. So this morning, Kelly and Grandma Cindy are on their way to CHOC. Abby will be put to sleep and the doc will have to guide the end of the GJ tube, which is called the catheter, through the hole in her tummy, go past the Gastro or stomach area and into the first section of her intestines, or the Jejunom. While the tube itself goes through the hole in Abby's tummy the doc uses a scope that goes down Abby's mouth and throat, and projects the image on a monitor so she can see what's going on.

The surgery itself takes about 15 minutes. But it's all the stuff before and after. The IV stick is a nightmare because Abby is a very hard stick and usually gets poked about 5 times before they get it. Then of course coming out of anesthesia is terrible and nauseating. So Abby is pretty miserable for the rest of the day.

But it must be done right??!!! We need her to keep growing and this is how she gets fed.

Here are some fun pics to tide everyone over.

Abby LOVES to go into Eddie's crib in the morning. Here are some old shots taken before we moved Eddie into his own room. Abby loves to jump all around and they inevitably bonk heads or trip or something and fall down. The falling down of course causes all kinds of giggles and laughing. It's great!

Here is Eddie at a friends birthday party.

Look at my little guy! I love this little chunker so much! He is truly the best thing that could have happened to us and to Abby. His timing is so perfect. He LOVES his sister so much and is so good with her. I love him I love him I love him. I wanna squeeze him!

Remember how we said that Abby loves the taste of food but hasn't quite gotten the whole swallowing thing down? Well, here is an example of that. Notice the bulge in her left cheek. She chipmunks her food in the left cheek for ever before she gets to it!
But even with a cheek full of food, she is still cute isn't she?!

Momma is very patient with Abby when she tries to "help." Like every other kid who likes to "help" Abby only slows down the process. But again...she's super cute so what can you do?

I mean, come on! I love these hat backwards pics.

Alright then,

Give it up for the Abby Followers! I know you guys are still out there and I love that Abby continues to touch your hearts and you remain faithful to her progress. As long as you all are still watching, Dadda will keep typing. It means the world to me....

Seriously. You have no idea.

I love you.

Abby's Birthday Pics

2008-05-23T01:25:00.001-07:00

Here you go Team,

They are fantastic!

Look who's standing! Can you believe it?!

We took a little family trip to see Emma and Maddy. It was a beautiful day. Abby was in a great mood and Eddie was snoozing in the car.

She did this all on her own too...Just when Kelly and I thought she couldn't melt our hearts anymore, she goes and does this...
LOVE HER!

They love going for rides in the new wagon!

New Pics and Updates On the Way

2008-05-19T11:46:00.000-07:00

Hello From Abby Town,

It's been crazy over here lately. We had Abby's B Day party and she had a great time! But then she got sick and so did Eddie. In fact, Eddie got Croup...aaarrrgghh. He was coughing and wheezing and it was terrible. He's better now, but it was over a week of constant crying and fussiness during the night. We got zero sleep but worse than that, our poor little Bubba was in pain.

I have some great pics from Abby's B day that I'll try to get to soon.

On a side note, we got Eddie and Abby some Fig Neutons. I have no idea why those fell off my grocery list. Fig Neutons ROCK! We got some animal cookies too. Oh man... And graham crackers, and apple juice, and Ritz...oooooohhhhh the Ritz. Daddy loves them Ritz. Why I ask, why did these fall off my grocery list? These are all classics!!! If you haven't had a Fig lately, go ahead and pick yourself up some. I'm telling you, you'll be glad you did.

Happy Birthday Girls!

2008-04-29T00:42:00.000-07:00

Wow. It's been so long I have no idea where to begin. Oohhh, I know....How about this? HAPPY BIRTHDAY ABBY! Today, April 29th 2008, our little Abby Girl is 2 years old. Her sisters, Emma and Madelyne are no doubt celebrating with her. Happy Birthday you two. Mommy and Daddy miss you both very much. Thank you girls for watching over your sister and now your brother too. You are sure to have your hands full!

Okay then, let's start with Easter. We went out to La Quinta (Palm Springs area) to stay with Great Grandma and Grandpa, aka "G.G." and "G.Pa" The weather was perfect and the kids had a blast.

Take a look at Abby and Eddie with their Easter Baskets...

We put M & M's inside the Easter Eggs and Abby was having so much fun just shaking them like a maraca...

Whereas Eddie was more interested in his basket and spent most of the time trying to get it opened. The packaging provided much more entertainment than we had anticipated!

We also went to the pool. It was the first time for Eddie and Abby's first time this season. Last year she was not a big fan at all, but this year she is loving the pool!

Ah yes, the O Face....a classic indeed

Eddie couldn't get enough of the pool.

Look at this guy! What a little tank. At this very moment, he's plotting his course and in two seconds he'll dart in the direction he's looking. However, he'll take off so quick that his little hands can't get in front of him quick enough. So his master take off plan will turn into a barrel role instead.

Unfortunately, both Abby and Eddie got sick over the Easter weekend. Eddie was able to shake it off after a week or so but Abby wasn't so lucky. She got a terrible case of nausea and diarrhea. The diarrhea made her incredibly dehydrated and thirsty. Abby has really come a long with the sippy cup and would drink a lot of water to hydrate herself. However, since she doesn't have that sphincter at the bottom of her esophagus, the water just came back up. She would dry heave and everything. It was not pretty and Abby was in a lot of pain. Finally, one morning she woke up looking terrible and pale and acting lethargic, so Kelly took her to Urgent Care. She was admitted immediately due to dehydration and severe diarrhea. Since she was so dehydrated, the nurses couldn't find a vein for the IV, and our little munchkin got poked over 6 times before they found a vein that would work.

After that, she was pretty out of it... Take a look...

The docs think she may have contracted a form of the rotavirus. (google it for more info) There is of course a vaccine for this virus as of this year, but Abby didn't get it. Anyway, as usual, momma didn't leave Abby's side and Grandma, Grandpa and GG and G Pop came to the rescue. Between all of us, Kelly was able to stay with Abby while we all played hot potato with Eddie. Thanks guys...AGAIN....for helping us out!

Finally we get a smile

Since she had the IV hooked up at all times she couldn't move around the way she wanted to, so keeping her attention became a real challenge. Uncle Steve managed to keep her interested in his bubbles for quite a while.

Eddie managed to keep himself occupied with all the new hospital toys...especially Abby's IV Tube.

Grandpa and Abby in the hospital right before going home. Finally she started to feel better.

As for the other stuff, Abby is doing GREAT. She is taking steps on her own now. They are a bit wobbly but she's taking them! Here she is helping Daddy push the stroller and as you can see, she is not holding on to anything! She does this a lot now. She can stand on her own with no problem for quite a while.

She is also saying, "Momma," "Dadda," "Papa," "Eddie," (kind of) and others that I can't remember now. It's great. She has learned some sign language too. She knows the sign for "all done," "more," "want," and I think some others here too which again, I can't remember. (It's 2:30AM...cut me some slack will ya?!)She is supposed to point to what she wants, and then make the "want" sign. Her preference though is to still simply point and yell, "eeeeehhhhhhhh!" And these days, the "eeeeeehhhh!" has gotten incredibly loud. Eddie has taken up the role too now and he has a crazy set of vocal chords! That kid can yell with the best of them. He is also quite the adventurer. Check out his favorite new play area...

And here is Eddie's little escapade to the bathroom the other day. Abby quickly followed little brother in, but not to escort him out. No no, she was all about it. Together they finished up the role! Nice.....!

Thank you to all of you for following Abby and sending your prayers and well wishes during these past 2 years. As you all know, she has been through so much, had so many surgeries, so many "close calls," and so many colds, flus etc... and I can honestly say that I'm not sure how we would have gotten through all of it without all of you.

She's 2! I can't believe she's 2! Today is a good day. Wait no...today is a GREAT day.

I hope you are all having a great day too.

I know you know this, but I love you all very much. WE love you all very much.

- Abby's Management

2008-03-07T00:10:00.000-08:00

Alrighty then,

I suppose I should jump right into it huh? Man, a lot has happened. I really do need to post more often! Let's see.... a few weekends ago, we all went out to La Quinta (Palm Springs area) to visit Kelly's Grandparents. On Saturday night I was taking Abby out of her high chair after dinner and her J Tube Extension, which is the plastic tube we hook up to that button on her tummy, got caught on something on the high chair. The button has a little plastic donut hole that the J Tube Extension snaps into, and that part ripped out of the button. Abby wasn't hurt, but everything from her tummy was dripping out of her at a very fast pace. So WHAT NOW??!!!!

We actually knew this day would come. When Abby had the J Tube put in, we were told that we would leave it in as long as possible, which meant we would leave it in until it either broke or got clogged. When that day comes we would slowly pull the button and the J Tube out of her tummy and then insert a regular G Tube temporarily. So the doc ordered us the spare G Tube and that was that.

Well, that day was upon us, but there was one problem. The spare G Tube was at our house and we were 2 hours away in the desert. Not to worry! It had been quite a while since my little bride got out of the house and I didn't want the weekend to end just because of this. So I drove home and back that night and we popped the G Tube in and called the doc for the next move.

On Tuesday of the following week, they got Abby in to get another J Tube placed. This has to be done endoscopically which means they use a scope that has a camera on it to see where they're going. The J Tube was a lot longer than I thought it would be. When Kelly pulled it out of Abby's tummy, it just kept coming, like spaghetti! No joke. The sucker was like 10 inches long. Nuts. Anyway, since it's kind of a big deal to put this J Tube in, we had to do the whole pre operation thing....get an IV put in, wait forever and then go into the OR. And while we're in the OR and the nurses are getting everything ready, I notice there's no anesthesiologist so I ask the nurses what the deal was. "Oh yeah" they say, "we're just going to put her under a little bit, so she's in a bit of a twilight state. But we're not going to knock her out completely so we don't need an anesthesiologist." Hmmmmmm....I know what I was thinking and I'm sure Kelly was thinking the same thing, which was, "Yeah right! You think Lil Miss Crazy is going to sit still with a just a wimpy dose of twilight juice? You gotta be joking!"
Sure enough...the juice wasn't enough. They couldn't keep her still. We were told we'd have to come back the following day. Fan Stinkin' Tastic! Yabba Dabba Pooh. So back we went on Wednesday, did the pre op thing again, but this time everything went well. They knocked her out her out before the IV went in which was great because she hates that so much. The J Tube was placed with no problem and we also found out some additional news.

Before I get into that news, let me offer a a quick refresher course. Abby would always throw up her formula, even in the NICU. We could never give her a lot at one time like other baby's with G Tubes because it would come right back up. This is why she was having so much trouble gaining weight. The J Tube is the short term fix to this problem because it takes the formula past the stomach and into her small intestine where it doesn't have the opportunity to be thrown up. Okay... so now, here's what the GI Doc found...

The doc took some time after placing the J Tube and looked around her stomach area a bit and noticed that something was missing. A sphincter. Yeah... you heard me...a A SPHINCTER. Apparently, you and I have a sphincter at the bottom of our esophagus right before our stomach. This sphincter is what keeps our food from coming up when we gag. It only opens up when our body absolutely needs to get something out of our stomach and we put a lot of force on it. Well.... our little Abby is fresh out of that sphincter. So what now? Well, there is a surgery we can do that will basically jerry-rig a sphincter called a Fundoplication, AKA, a FUNDO. But we're not very excited about this because all of our research on the surgery was coming up pretty negative. Google that one and you'll see what we're talking about.

So the plan for now is to keep putting a new J Tube back in and not go back to the G Tube after all. We're only going to hook her up to the pump at night now with some new super SUPER dooper strong formula and feed her normally through the day. She doesn't eat much now on her own but without being fed from her pump during the day, she should get a bit more hungry. Also, Abby is getting close to walking and will most likely be walking on her own in the next 3 to 6 months. The more vertical she is, the better she will digest her food.

Speaking of walking, some pics on the slide show below (ooops, there goes the surprise) show Abby using a walking contraption. She doesn't use this all the time. This is just at therapy and she loves it because she is "walking" without the help of any of us. And our Little Miss Magic is all about doing it on her own.

And then there's Eddie. He is the coolest little guy ever. I love him so much and am so thankful for his trooper attitude. He cruises with momma and Abby to all her appointments and is really good about everything. He's usually in a great mood and yes, he still loves his sister! He is starting to crawl now and is loving his new skill. Kelly thinks he's going to be a lefty like his daddy but I'm not so sure. Of course I think that would be great to have another south paw around the house, but I'm not getting my hopes up. We shall see.

Phew! That was a long one. But it was worth the wait, right? If I'm still in your dog house, watch the video. That should get me at least a FEW brownie points!

Good Night Abby Town. Sleep tight.

Love,
Daddy, Momma, Eddie and Abby

Now we know!

2008-02-10T21:46:00.000-08:00

Hello Hello my Fellow Abby Goers,

Before I jump into the meaning behind the title of this post, let me get a few updates out of the way. Abby is doing better, but she is still a bit sick with a runny nose and still throws up just about every morning. Sometimes we can run in and catch all the "goodies" before they land on the sheets but other times, like this morning, we're not so lucky. I have to say though, we have the whole process down pretty good. Kelly grabs Abby and starts pulling her clothes off while I grab new jammies and proceed to yank the matress out of the crib to put a new set of sheets on. The key though is to NOT get too excited or move too fast, because then the Abbers only gets excited too. And at 5AM, that ain't what we're looking for.
Today, Abby was in a great mood. She was making all kinds of sounds with her voice today too. All kinds of Bah Bah sounds and Mah Mah sounds and Dah Dah sounds (none of which were purpose though I'm sad to say.) Oh! She has learned to stick her tongue out too! This is so great! I picked her up Saturday morning from her crib and she just started sticking her tongue out at me. I loved it! This is good because Abby as you all know has trouble eating. She has trouble eating because she can't get her muscles in her mouth or her tongue to work as well as you and I can. And sticking out her tongue ON PURPOSE means that neurologically she has a stronger ability to control the actions of her tongue. Lets not forget that she is SUPER CUTE when she does this. We're still learning it though, so it's hard to get a picture of it. I can't get the tongue on cue like I can the O Face, or Kissy Face, or Very Serious Face. Have you guys seen the I Don't Know Gesture yet? Shoot, I don't think you have. I need to get that one too. Alright, lots to do.
Abby has become EXTREMELY needy and clings to momma like velcro. It basically goes like this: Abby wakes up, momma gets Abby out of bed and takes Abby downstairs. Momma puts Abby on the ground to play....but no. Instead, the Waaaaambulance comes screamin' into town. The sirens turn off only when momma picks Abby up again. This is so much fun I can't even explain it. Thank Goodness Eddie is so calm and sits up on his own now. Kelly can sit him up with some toys and he'll be okay for a short while and won't move. Unless of course he topples over. Then he proceeds to roll like crazy, inevitibly smashing his head into whatever lies in front of him. It's usually a chair leg, a toy, the ottoman or a wall. Either way, the impact of said smashes don't seem to phase him. The dude just keeps on rollin'. He's just a happy go lucky spirit.
Okay...J Tube update. Luckily, the J Tube which was suppose to last 8 weeks is still hanging in there. We have a J Tube replacement surgery scheduled for early March. We hope this J Tube will last as long as then. If it stops working, Kelly is supposed to take it out and put the spare G Tube we have in. That's right, Kelly does this. She's done it before. Crazy huh?
We are hoping the new J Tube will be as successful as this one has been. Abby has really gained some good weight and we think we're close to the 20 lb mark, which means we can turn that car seat around and Abby can face forward.

Okay, so I'm light on the pics, but the one I do have is PRICELESS! Now we know where Abby gets her O face.....

So here is an all time classic O Face picture of Abby....

AND HERE IS KELLY AROUND 2 YEARS OLD!!!!!!!!!!!!!!!!!!!!!!!!!

How great is that? I love it!

That's all for now. I hope this blog takes care of your Abby fix for now. I'll work on the tongue picture and the I Don't Know Gesture picture too.

Abby is finally feeling better

2008-01-27T21:36:00.000-08:00

What's happenin' my friends,

I hope all of you out there in Abby Land are doing well. I'm happy to report that our little munchkin is doing a lot better. She doesn't have much mucus build up anymore and is sleeping a lot better lately. Kelly did have to give her that breathing treatment some more though and at first we were worried that having a mask on her face would freak her out. But momma just held the mask over her mouth and sang her songs for 10 minutes while she gave Abby the breathing treatment. Surprisingly, our wiggle worm actually sat still. Not only that, she was absolutely consumed by her momma and just stared at her. Below is a picture of this scene....except for the fact that Abby is looking at me, but that's only because I called her name...

Abby has also been eating a lot better. And by that I mean that she actually takes consistent bites of her food while she is in her high chair. Before, she wouldn't take a bit of ANYTHING. It was pretty bad there for a while. Now she eats little bites of her food one after the other, which is GREAT! However, she does "chipmunk" her food a lot. That's the term Kelly and I give to Abby when she stores her bites in her left cheek. It's hilarious because she whines and hits her high chair tray for another bite and then another and another, but all she does with it is put the bite in her mouth, chew it for a bit, and then push it over to the side with the other bites. The first time we noticed this was only after bite number 1 million or so, because she had a HUGE bulge coming from her left cheek! Kelly forced her to open her mouth and sure enough, out came a whole winters worth of food. It's really funny. I'll try to get a picture of this soon. Some of it must be going down though because she has gained some good weight. And let's not forget about her faithful J Tube. (Stay tuned for why it's called the "J Tube") This is the REAL reason she's gaining weight. The J tube as you know, shoots the formula directly into the first part of Abby's small intestine, which is called the Jejunum. (That's why!) The J Tube has to be pretty small to do this, which means that it will most likely get clogged. We were told we'd get 6 to 8 weeks out of the J Tube before it would get clogged but it's been just under 3 months since Abby had her J Tube put in, and it is still working. Not bad huh? We are extremely grateful for this because she is now 18 lbs, 10 oz! She is actually getting a little meat on her bones. I love it. We need her to get to 20 lbs ASAP so we can turn her car car seat around and let her face forward. She's getting pretty tall and her poor legs don't have much room, but the car seat regulations say you have to be 20 lbs. We'll get there soon I hope.

We put Abby's feeding pump back pack on again to see if she would warm up to it, but she still doesn't like it. Last time she couldn't even move with it on, but this time she had a bit more success. Still though, she was bothered by it so we took it off. I pulled all my tricks out to get her to smile for me for this picture but she wasn't havin' it....AT ALL.

I do hope she'll get used to this thing though because if she does wear it, that's just more formula she's getting which means even more weight gain. And that's pretty much it for our Abby Girl. She is a bit of pistol these days with momma. Lot's of screaming, throwing her food off of the high chair and some serious strong willed personality stuff. Kelly's mom is loving it because apparently...thats EXACTLY how Kelly was!

As for Eddie, he's a happy little guy. He has a great smile and he LOVES his ExerSaucer. Check out these shots of my little bowling ball...

He has found his screaming voice....which I'm super dooper excited about. Kelly is too. She loves it when both Abby and Eddie are screaming like crazy in an attempt to get her attention. It's tons of fun. You all should come over some time to experience it. Eddie is also rolling around a lot. He prefers to roll to one side though, so instead of doing one or two rolls one way and then heading back the other other direction, he insists on continuing his path in the same direction and is now finding himself lodged up under the ottoman, or his cradle swing, or by the couch or under the rocker chair. Wherever he ends up, he's sure to twist himself in some fashion that only leads to more of that screaming I was talking about. I have to admit though, it's funny to watch. He just rolls and rolls and rolls... I think I might push the furniture out of the way and just let him roll forever and see how far he goes!

That's all for now you crazy, whacky Abbyaddicts. I love you deeply.

Here are few more to enjoy....

Abby is home!

2008-01-15T16:32:00.000-08:00

Hola Friends,

Abby is home. She came home Friday. She is still sick though. Yesterday the Pediatrician noticed that she was still wheezy so she got a Nebulizer (sp?). Anywho, the Nebulizer gives Abby the same breathing treatment that you saw on the video, only with this deal she has to actually wear the mask for 10 minutes. No bueno. She is NOT going to like that. What baby would?

So I'll keep you posted on that one. No pics today. Working on a new Eddie video though. Should be good. Have to use a wide angle lens though...the kid is a chunker!

Have a smashing week friends. Live it up.

Starting to feel better

2008-01-11T00:14:00.000-08:00

Okay,

So it's looking like Abby will be able to come home Friday. Yahooooo! We can't wait for that but I am also anxious to get MY baby home. Poor Kelly has been there this entire time and is running on MAYBE 3 to 4 hours of sleep a night and is exhausted, so we need to get her home too. Last night I guess Abby decided to have another party in her crib from 2 to 5AM. What makes it so hard for Abby to stay asleep is all the junk that builds up in her throat. As it it sits there and accumulates she starts to choke on it. She gets nauseous too because all she has in her tummy is all that junk and it doesn't set well. The good part about being at the hospital is that they have an electrical pump kind of gizmo that goes into her throat and suctions everything out. She feels so much better after this happens, but it's no picnic. Kelly said that the first time they did it, they had to go in through her nose and poor Abby screamed her head off at a level that Kelly had never heard before. Although each time there after, the nurses have only gone in through her mouth and down her throat instead of through her nose. She wasn't too excited about those suction episodes either but they weren't as bad as the other way.

So ANYWAY...my point is that we can't bring her home until all the junk and gunk clears up because we don't have a fancy shmancy gunk and spit sucker upper gizmo at home. And if she doesn't get the gunk out, she is miserable. If she is miserable, she isn't sleeping, and if she isn't sleeping, she isn't resting and getting better. Instead she is bouncing around and guess who is entertaining her? Momma! So that means momma ain't sleepin' either...!

Some good news is that the J Tube is still hanging in there and they have been feeding her 24/7 basically, which means she has actually had some good weight gain since she's been there. Some more good news is that Eddie seems to be doing much better with his RSV and is pretty much back to normal. He has been so great during all this. It's pretty easy to figure him out. He is either tired, hungry, or has to go poop. It's funny because I have the same grumpy list....well...I actually have one more to add to my list but other than that, he and I are exactly the same! I'm sure he'll add this one later too...!

While we're looking good, it ain't over 'til it's over so keep the positive thoughts, well wishes, prayers and all that good stuff coming until the little thing actually comes home.

Many thanks to Grandma Cindy who took time off of work to help out and Great Grandma Bette who dropped everything out in Sunny La Quinta to come out here and help as well. This would have been a very difficult situation without you guys and we can't thank you enough.

Below is a short video I made up from some footage I got using my old school digital camera so please excuse the grainy appearance. We had to wake Abby up to give her the "breathing treatment." The breathing treatment is given by a nurse that holds this tube that blows air in her face. The air is cool and full of stuff that helps Abby's lungs expand and take in air easier. She has really gotten to like this stuff. Kinda makes you wonder what's in it!

Enjoy and thanks for checking in.

Ryan

Welll...she FINALLY got it...

2008-01-09T07:51:00.000-08:00

Friends,

Abby is in the hospital. We admitted her last night and the tests came back positive for RSV or Respiratory Syncytial Virus...or...REALLY STUPID VIRUS! It's not the worst case they have seen but her Blood Saturation Levels are pretty low. It's like this...when we breathe we put oxygen in our blood stream and that level of oxygen is called your blood saturation level. This is usually in the high 90's (97 to 100). When your "blood Sat's" are below 93 or so, it's not a good sign. At urgent care last night Abby's dropped down below 93 and with all the vomiting and the crackling sound in her lungs...we weren't comin'home. Once she was in the Pediatric Ward, her sats went into the 80's and so they gave her some oxygen to breathe and they went back up. The goal here is to get her off the oxygen and her blood sat's to be in the upper 90's on her own...and not with the oxygen. Until that happens we will be in the hospital for the duration.

Eddie has it too, but for a full term baby, it usually isn't as worrisome. That little tank is going to be just fine. And he was GREAT for daddy last night. I'm telling you, God definitely gave him a pep talk before he came to us and said, "now Eddie, you're going to have to be very understanding during your first few years and just go with the flow. You're going to have to be an easy baby that doesn't fuss around and smiles and brings joy to your parents worried faces. Your job is to make them relax when they see you." AND THAT'S WHAT HE DOES. He is so laid back during these things. It's like he knows something serious is going on and not to bother us. He is our new burnin' hunk o love and I do love him very very much.

Okay then. You guys know what to do. Prayer time. Knees and all. The whole 9.

Hit it.

All my love and visions of a white sandy beach.

Ryan

The Strike is FINALLY Over!

2008-01-06T21:42:00.000-08:00

I have GREAT NEWS! The Abby Blog Writer Strike is officially over. I have finally reached an agreement with my crazy life and we have come to a conclusion. The deal is that I will no longer sleep....ever. Seriously though, I think I just needed to adjust to my new job, let the holidays come and go, and give myself a little rest for some much needed energy to recharge my blogging battery. I'm pumped for 2008. A lot is going to happen with Abby and I'll get back to the every 2 week update. I may even go crazier than that, but let's not count on this just yet.

Alright then, on to the update. Abby's J tube is still going strong. Because the tube now extends into her small intestines, the tube itself is smaller and tends to get clogged every 4 to 6 weeks. So the fact that Abby is at 2 months and the tube is still working is GREAT because she has gained 2 full lbs! That means she's 18 and a half lbs now. This is by far the best weight gain she's had since we took her home from the NICU. Once it does get clogged, we will have to take it out, and we will absolutely put another one in since it's working so well.

Christmas was fantastic. Abby was more interested in the boxes and the paper than anything else. Eddie didn't know what was going on either. The major downfall has been that Abby is STILL sick. In fact, I'm typing this at 1AM because she threw up again tonight. Imagine having a stuffy / runny nose and having all that gunk get caught in your throat and not having the ability to spit it up or anything. You just have to sit there and deal with it until so much accumulates that your body forces you to throw it up. Well...that's Abby....every single day. The poor think is miserable at night when she sleeps.

In the day time however, Abby is doing great. She is really getting close to walking and getting more and more brave when she finds something to help her stand up. After she's on her feet, she'll let go for a split second. Kelly and I are having so much fun watching Abby progress so well in this regard. Her left arm, hand, leg and foot seem to be doing alright as well. We have a brace for her left hand now which forces her thumb open and allows her to grab on to things better.

Eddie by the way is 17 lbs 4 oz. He is getting quite the personality and is rolling over and everything already! He's doing great and I can't wait for when they're both older so I can watch them interact with each other.

Good night friends. Be sure to check back more often from now on. I promise to do an update more often than every month.

And because of my ultra slackingness, I have really gone crazy with the pics.

Enjoy and we love you! Say some prayers for Abby so she gets over this cold.

Love you all.

The Gaya's

Check out these two of Abby and Eddie sittin' on the couch together

Christmas Pics! Here are a couple of Abby and Eddie with Santa. The best part was when Kelly came to take Abby off of Santa's lap, Abby grabbed onto Santa and refused to get off his lap! Santa was very pleased and said how refreshing that was. We were to promise to bring her back next year!

We couldn't help ourselves... the bow was just begging to be put on Abby's head!

Eddie scored for his first Christmas!

Here is Abby's cousin Caden reading to her. Abby LOVES books

uh.....hmmm....Soooo, THIS is my job when we go shopping?

Check out Abby taking a bath in Grandma's sink. She was loving it!

And of course, here's another shot of the "O" Face

It was FREEZING up north so we really bundled the kids up.

Kelly bought Eddie an awesome beanie!

Here's another one from a different night when Kelly got our Abby all bundled up in that cute hat.

2 AM Smile

2007-12-05T22:25:00.000-08:00

It's been a crazy month! I hope everyone had a great Thanksgiving. We sure did. Eddie started walking and Abby ate the entire turkey by herself. Just kidding. We did have 22 people here though and it was a blast. With Christmas right around the corner, we're going nuts trying to get everything done.

As for the last month, a lot has happened.

Abby and Eddie got pretty sick. It was terrible actually. They both had this cough and runny nose thing. It was viral so there wasn't anything to do but wait it out. And now that we have one of those video monitors for Abby we were able to watch her toss and turn all night long. Just about every night, she would choke on some of the saliva in the back of her throat and since she has such a sensitive gag reflux, the choking would turn into throw up. Abby is still pretty far behind with learning how to eat, chew and swallow and all that, so hocking loogie's is not something she's mastered quite yet. This means she can't get the junk out of her throat unless she coughs or throws it up. And let's not forget about her poor nose. The little thing was raw by the 4th day and it took a full 2 weeks before she kicked the cold. Eddie didn't have such a bad nose problem but his cough was horrible. It took him about 2 weeks to kick it too.

On a lighter note, Abby got her portable pump this month. It's a much smaller pump and she can actually wear a backpack that holds the pump so when we're out and about or if she's playing she can continue to get fed. This is great because because with the new J Tube, (the one we put in last month that goes into her small intestines) she can't get too much food at once. This in turn means that she needs to have the pump on a lot (roughly 16 hours a day) to get to the level she needs to be at. So anyway, below is a picture of the "Mini Backpack" which as you can see is WAY TOO BIG. So we ordered the "Super Mini Backpack" which by the way Kelly got in a red Hawaiian flower print. (Pics on this to come later) But...it's TOO heavy with the pump and the formula in it. Abby fell backward with it on. I guess we'll keep trying but I have to say I was a bit upset to learn she couldn't wear it while she was playing around the house. That just makes it more difficult to get her to the volume of formula she needs to be at each day. Now that she's mobile and crawling, there is NO way we'd be able have her sit still for any period of time, especially if it's to be hooked up to the pump. The only time we get to do that is if she's in the high chair (we still go through the motions of feeding her so she learns the habit of breakfast, lunch and dinner), the car, or taking a nap. Other than that we're toast without that backpack idea working for us.

This is the Mini Backpack...empty.

Here's another cute one of Abby

Abby is hanging out in her walker outside while Daddy hung the Christmas Lights.

Eddie wasn't nearly as interested in Daddy hanging the Christmas lights. He must have thought it was bright out though because when I checked on him, he managed to pull his beanie down over his eyes!

Eddie is getting close to rolling over! I had to help him in this picture, but he's ALMOST there.

Here's Abby with Uncle Steve

I get in trouble when I spike her hair but I think it's hilarious!

Well, that's all for now friends. Thanks for your patience. Keep Abby in your prayers because we think she actually got sick again. The last two days her nose has turned back into that running faucet we thought we were rid of. Last night we enjoyed another throw up situation too. My heart aches for her when she's like this. Although once we grab her and get the snot out of her nose, change her jammies, get her sheets changed and get her comfortable again, she actually gets in a good mood. And I have to tell you, no matter how tired Kelly and I are, I would be lying if I didn't say that her smile lights us up and we actually enjoy this part of our 2AM rendezvous. Its funny, she's the one with all the issues, and yet, she still cracks a smile and gives us kisses at 2AM. She's the one that just threw up, she's the one with a shunt in her head, and a j tube in her stomach and a left leg and arm that don't work very well, yet with that smile, she's the one telling me that it's all good. With that 2 AM smile she says, "Don't worry daddy. If I can handle it....so can you."

Man she is one tough cookie. I love you Abby.

It went well

2007-11-06T21:03:00.000-08:00

All is good over here,

The procedure itself was very quick. The doc simply took out the G Tube and replaced it with the J Tube. Since the J tube extends into her small intestines we have to give Abby her food over a slow but consistent pace. She's asleep now and the pump is going so we will see how everything goes.

Pray for success and lots of weight gain!

Take care everyone.

Ryan

Today is surgery day

2007-11-06T07:35:00.000-08:00

Today is the day that Abby gets her J Tube. This the tube that goes into her small intestine and bypasses her stomach. As we all know Abby is volume intolerant and throws up if we give her too much food. Our hope is that this J Tube will put some weight on her.

The surgery is around 10AM or so and if all goes well she should be able to come home today. I will update again tonight.

In the mean time keep Abby Girl in your thoughts and prayers!

Thanks,

Ryan and Kelly

Here are some fun pics

This one is from Abby's first birthday. I know Abby and Eddie don't really look alike but take a look at how they both look when they have a big grin on their face!

Halloween Pics! Abby was a Lady Bug and Eddie was a plump little pumpkin

Here's Eddie on the couch enjoying a sit com with Daddy.

Golf, Weight Gain, Sickness, Fires....woowee!

2007-10-24T21:15:00.000-07:00

Abby's golf tournament was last Friday. It was fantastic. I can't thank everybody enough that donated and participated. It was so great to see all that support.

As far as Abby's weight is concerned, we still have a lot of ground to cover. She did pass the 16 lb mark finally and is officially weighing in at 16 lbs, 4 oz. The J tube is going in on the 6th of November so mark your calendars. As I mentioned before (which was over two weeks ago....sorry!), Abby will undergo twilight anesthesia and be able to go home the same day. Once the J Tube is in, it only lasts about 6 to 8 weeks before it gets "yucky." That was the technical term by the way. Apparently it gets this way from all the formula that passes through it. Anyway, once the tube reaches full capacity on the yuck o meter, Abby will go back in and they will replace the J Tube with a new, yuck free tube. The goal is to get roughly 16 weeks or 4 months (check out those math skills) out of this. The docs didn't give us their hopes for weight gain for Abby, just that she needs to gain "as much as she can."

Kelly got really sick on Monday and I dragged her into urgent care. She had cold sweats, a fever, body aches and was extremely fatigued. Abby had also been pulling on her ear a lot lately and it had been 6 days since my boy had gone good old numero dos. (That's 2 you gringo's). The doc told Kelly it sounded like she had some kind of flu, which was confusing because according to the doc, the flu doesn't show up until January or so in California. Either way, there wasn't much she could do for Kelly except advise her to drink lots of water and get some rest. We took Abby and Eddie to their pediatrician on Tuesday. Luckily Abby's ear tugging was from the pain of her molars coming in, not an ear infection. And Eddie cleared out with a little help from a glycerin chip. So all is good there. As of today, Kelly is feeling a lot better.

The fires have been crazy. We could see the flames of the fire in Irvine off in the distance from the end of our street last night. Ash is falling all over the Irvine area. The smoke has been really bad as well. Many of our friends from San Diego and in Orange County have been evacuated. Our thoughts and prayers go out to everyone especially those in San Diego as those have been hit the hardest. I still can't believe that Rancho Bernardo has been hit so hard. That is where Abby's tournament was.

Enjoy the pictures friends.

We love you all.

Here we are at the start of the golf tournament

Check out how big Eddie is getting! He's 13 lbs 12 oz already.

We took my mom to see Emma and Maddy and she took this great family photo. Look at Abby! Love her...

Here's a close up of the head stone. I don't think I've posted this yet. It's beautiful isn't it? Kelly did a great job designing it.

Ummmmm....yeah. Kinda cute right?

And just in case it wasn't clear, we made sure to spell it out....on her bum!

Note the stain on my shirt. I can honestly say that I do not own one T Shirt that doesn't have some kind of stain on it. I love it!

Abby needs to gain weight

2007-10-03T07:12:00.000-07:00

Hi Abby Addicts,

Our little girl needs to gain weight. Her docs are growing VERY concerned that she is 17 months old and still hasn't passed the 16 lb mark. They have told us that if she isn't growing and gaining a sufficient amount of weight, that her brain cannot grow and develop correctly, thus the increased concern. Abby has a very sensitive stomach and we have tried so many different formulas but each one seems to be worse than the previous one. Not to mention, these were no "over the counter" kind of formulas. These were the super dooper, only use it on extreme patients because it's so expensive and hard to make kind of formulas. Most of which are "pre-digested", so they are super easy on the tummy...but for one reason or another, our little baby girl doesn't tolerate them. (She throws most of her feedings up.) She has her GI docs baffled. So, the next step is a J Tube. Yep...there's another kind of feeding tube my friends. The J tube bypasses her stomach all together and goes straight into her small intestines which keeps her from throwing her food up. It's a short fix to get some weight on our little angel. After 6 to 8 weeks we would go back to the G Tube. I am told the procedure to put the J Tube in is not that big of a deal. It would be an out patient procedure and she would be under "twilight" anesthesia.
Abby and Kelly (and Eddie for moral support) will be headed to the GI Doc(gastrointestinal for those of you just tuning in) tomorrow for a consultation. So it looks like we're at that time again. It's prayer time everybody. Abby is very well known for her magic and pulling some wild Abby Cadabra kind of tricks out of her proverbial hat, but we all know those tricks rest on the shoulders of many prayers and well wishes.

As for Eddie, he is doing pretty good. He's 12.2 lbs and cute as ever. He is smiling and cooing and laughing a bit now which I love! Actually, the first time I got him to smile and coo I didn't even mean to. I was giving him kisses and just smiling when I realized a piece of peach was in the middle of my front teeth. So, like a lizard, I tried to push it out with my tongue. Well, the face I made while sticking out my tongue made Eddie smile bigger than I had seen yet! And you know me by evidence of my Abby laughing video, when I get my kids laughing on something, I'll continue to do it, regardless of what it is. So there I am, sticking my tongue in and out like a lizard and loving each and every smile I got from it. Ironically, he's not into that anymore. Just like his sister. What's funny today is most certain to be boring tomorrow. That just means daddy has to get more and more creative and I am up for the challenge.
Eddie is refluxing really bad still though. The doc said that his sphincter, or circular muscle at the bottom of his esophagus isn't contracting or closing up as much as your and mine do. It's wide open and stays open instead of closing up a bit to keep milk from coming back up. We have tried two medications which haven't done anything so he's off of those. Eddie is scheduled for an "Upper GI" Test where he drinks some fluid and they will x ray him to see what happens with the fluid. This will tell us for sure whether or not it's reflux and if in fact the sphincter is open. The good news is that he is ahead of the curve developmentally and kids usually grow out of this reflux problem over time, and since he's ahead of the game he will most likely grow out of it quicker.

There's a lot happening over here! Daddy's new job is going fantastic and Kelly is doing a great job at keeping these kids on track. Her mom, Grandma Cindy and Grandpa Cliff continue to come over and help out A TON, which is fabulous. Thank you so much mom and dad!

And now...the moment we've all been waiting for....picture time!

Here are Abby and Eddie...Now you can REALLY see how small Abby is because Eddie is almost just as big as her!

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Check out Momma and Abby!

Family Photo

Eddie all snug and ready for a night on the town.

Here is Abby with her cousins! Tristan is holding Abby and Caden is to the right! They're the coolest nephews EVER by the way!

Here is an older pic of the three of them from their visit down here

Here's Abby and Auntie Jocelyn (Tristan and Caden's mom)

Here's Abby when we were out to lunch. She doesn't eat much be she LOVES to go out and sit in her high chair at the table

Check Eddie's little smile!

Really Quickly

2007-09-19T08:05:00.000-07:00

All is good over here my friends.

I got a new job, we took our first trip up to Walnut Creek in Nor Cal to visit my family for a week and now we're back to the grind. Eddie's reflux is doing better and he's starting to sleep through the night. Abby is crawling everywhere and the CAT scan for her head turned out great. There were no problems that the docs could see and everything was ship shape.

I will get you all some pics soon. We have some GREAT ones from the trip so stay tuned.

Love,

Daddy

2007-09-03T19:32:00.001-07:00

Alright, I give up. Believe me friends, I would love nothing more than to sit here all day and do this blog instead of going to work. So if one of you out there could figure that out for me, I can guarantee you more updates than just every two weeks.
I suppose the good part is that I do have a bit more to talk about when I wait this long so you can be sure it will be a good one.
Remember last time when I said that Abby has been doing great with her new formula and isn't throwing up anymore? Well, you can toss that right out the window. The very next day after I posted the last blog, Abby started throwing up again. So we changed out her formula again but that didn't work. Then we went to whole milk and she barfed that up too. We even tried to give her some of mommy's milk just to see if she could keep that down since she was able to in the pass but to no avail. Up it came. She didn't have a fever though and she has actually been a great mood lately. So why the pukefest? Kelly got on the phone with the GI (Gastro Intestinal)Doc's assistant who said to just give Abby pedialyte water for a day and let her GI tract clear out. That was on Friday and so far so good. Although she is still doing terrible with her eating. Before we could count on Abby to take at least 10 bites of her carrots, or squash, or applesauce or yogurt or whatever, but now we can hardly get a few bites down her. We have officially taken a huge step backward with Abby's eating. But to be honest, that's really the only area she's not doing well in right now.
Since Abby has learned to crawl she has become quite the adventurer as all little ones become once they become mobile. She is better at it now and has more confidence in herself. Sometimes she has too much and forgets that she can't count on her left side so when she makes a move that requires her left side to support her in some way, it usually doesn't and she takes a tumble. She's used to the tumbles though and picks herself right up and tries again.
Abby's speech is way behind too and she hasn't made any sounds starting with the B sound yet. But she has begun to explore different pitches and octaves with her noises lately and is finally at that point where she is making sounds just to hear herself. I noticed today that she made a new sound and surprised herself. She gave me this cute look as if to say, "did you hear that?!"
Tomorrow is a big day for Abby. We have an MRI appointment at 7:30AM. It's a follow up to the last brain surgery she had when we drained the cyst in her brain. Since the MRI machine is so loud, Abby will be put out so she stays still. A full work up (or whatever the technical term is called) was ordered so that Abby's neurologist can take a look at everything to see how she's doing. The vomiting that was happening could mean that her shunt is clogged so he'll be checking for that too. This probably isn't the case because along with the vomiting, we should see a more lethargic Abby and she has been quite the opposite lately. Still though, it's concern and whenever the shunt is a possibility, we have a hard time resting until we can officially rule it out.
Eddie is growing right in front of our eyes, but he is taking after his sister in the up chucking category. It seems he has a very bad case of reflux. He is on Zantac right now, but the problem is that he usually throws the stuff up. Needless to say, we're knee deep in wet spit up cloths, wet bibs, wet shirts...wet everything! Kelly and our nannie, aka Grandma Cindy, have barely been able to keep up on all the laundry. All of this is familiar territory for many of you I realize and you're smiling right now saying, "oh Ryan, you have no idea..." I know. But seriously, it's crazy how much Eddie throws up. It's a wonder he gains any weight at all! His bib is soaked after every feeding. Soaked! Not damp people, but hold the thing under some running water kind of soaked.

Honestly though, I love it all and my wife is amazing. She is still getting up at all hours for him and still manages to handle Abby during the day with no sleep and still sneaks in time to do this or clean that or whatever. At the risk of sounding cliche and cheesy, and also because it's late and I am fresh out of any creative thought, let me just say that I am the luckiest man in the world. I love my wife. I love my kids. And I love my job...oh, wait....let's not get carried away here.

Good night!

Enjoy the pics - I went nuts this time. Couldn't help it.

Check out the Family Photo!

Last week Abby was the star pupil at a 3 day conference for pediatric therapists. She did fantastic! The therapist holding Abby in this picture is very well known in her profession and she just could NOT believe that Abby had a grade 4 Brain Hemorrhage at birth. But then, for all of you who have been with us since the beginning knew that already!

Look at her stealin' the show.

Abby has become very interested in Eddie. She is really starting to warm up to him.

These are my kids! That's so cool!

Here is Eddie with Momma

Eddie can sleep in pretty much any position!

Hey look...he's awake, but wait, it's 10PM. And yes, he JUST woke up. Another long night for momma.

Eddie and Daddy sneaking in a few Z's

Lot's to talk about!

2007-08-19T20:54:00.000-07:00

Hola Amigos,

Let's get right down to it....

Eddie is doing fantastic. He is only 5 weeks old and weighs over 9 lbs now! He was born at 6 lbs 5 oz. His doc said he's doing great. He spits up a lot though which has us a bit concerned. Per docs orders, we're just going to watch this for now and if it gets worse to let her know. He slept 5 whole hours last night! We're hoping he repeats this tonight and that it wasn't just a fluke. He is pretty much a perfect little guy. I have to say, Kelly and I know what people mean when they say that they grow up so quickly. Eddie is literally getting bigger by the day.

With Abby on the other hand, we were (and still are) blessed to have her as a little one for so long. As of a week ago, she was at 15 lbs even! She spent over 4 months in the 14 lb range so we are so excited for this. I thought we would NEVER reach 15 lbs! We are still giving Abby momma's breast milk since she produces so much which is great nutrients for her. And to answer the question that a lot of people have asked, we did try to put Abby to momma's breast but she didn't have a clue what to do. We figured this would be the case, but it was worth a shot. It's funny though because she does throw her head in momma's chest every so often because she sees Eddie hanging out there so much. I'm pretty sure she still hasn't figured out what all the bruhaha is about. Another positive note is that we finally took Abby off the formula we've been using since day 1 and have switched her to another, more sensitive formula and it's working great. She hardly throws up anymore and what's more, I don't have to get up in the middle of night to put another dose of formula in the pump! Instead, I start her pump right before I go to bed and just set the pump to give her the entire nights feeding over one, slow continuous cycle. I'm so happy about this I can't even explain it. By the way, I couldn't do this with the other formula is because that particular kind of formula goes bad after only 4 hours at room temperature, whereas this new stuff doesn't.

Abby has gotten more used to Eddie being around and his crying doesn't seem to bother her nearly as much anymore. If she's smart, she'll be nice to him since he's going to be bigger than her in oh, I don't know, like 3 months! She still has a lot therapy appointments as well, about 6 a week and all is going well there. In fact.....(drum roll please!).... Abby is crawling now!!!! That's right! She is officially on the move. She's still working out the details but she can absolutely get from point A to point B. And she smiles as she is doing it because she is so proud of herself, which just melts my heart. You can tell that it's a modified version of the standard crawl style to acomodate her weaker left side but who cares. We're just happy because we were told that Abby wouldn't crawl at all.

This past month with Eddie has been amazing but it's been crazy too with all of Abby's appointments. It's important that we mention two very important people without whom we could not have gotten through this. Abby's Great Grandma Bette lives in La Quinta and has come out a good handful of times to help out. She stays anywhere from 2 to 5 days and while she's here, she cooks, cleans, does laundry, and helps out with the Eddie and Abby. It's a sad day when she leaves let me tell you. Kelly's mom, Grandma Cindy comes over EVERY day and also helps with everything from cleaning to laundry to diaper changing to getting Kelly food. She also goes with Momma and Abby to her therapy appointments in the afternoon. Oh, and in case I forgot to mention this before when Kelly was on bed rest, Grandma Cindy was the one who took Abby all by herself to her therapy appointments. And since Abby is re defining the nickname Wiggle Worm, this ain't no picnic sometimes. Thank you Great Grandma Bette and thank you Grandma Cindy!!! You guys rock!

I'll do my best to get back to the weekly updates friends. Sorry to be such a slacker.

Love,

Ryan, Kelly, Abby and Eddie.

PS - Kelly got her hair cut! I think it's super cute. This is how she had it when we first met. I love it!

Check out the Hair Doo

Eddie is doing what he does best here...sleeping!

Abby enjoying her first otter pop

Abby is crawling!

Mommy and Abby in her first Sink Bath

Too Cute For Words

Lil Eddie sleeping....AGAIN

Abby as the big sister

2007-08-06T20:09:00.000-07:00

Before we get to Abby, let me give a quick update on Eddie. He is AWESOME! He sleeps, eats and poops like a normal baby! It’s great. We have no g tubes, no heart monitors, no shunts or anything to worry about. He is quite the grunter too. All day long he’s either grunting, sleeping, eating or pooping. He is an absolute joy to have around.

As far as Abby is concerned, she isn't very happy about having to share all the attention she was used to getting. She has definitely gotten better with the whole thing these past two weeks but it is going to take a while.

Like I said in my previous post, Abby is still having trouble eating these days. In fact, the past two nights she threw up. Abby has a very sensitive gag reflex. She can throw up if she cry's too hard or if she just chokes on a little saliva. So, unlike putting any baby down in her crib and letting her cry herself to sleep, Abby will throw up if she does this. The catch 22 is that she doesn't just lie herself down and go to sleep at night. The only way we can get her to fall asleep at night is to put in her swing. For whatever reason, she likes the swing and can fall asleep in the swing no problem. And that as we all know is a terrible habit that will be hard to break. But what do we do? We can't let her cry herself to sleep because she may throw up and if we stay with her and try to calm her down by patting her bum or something, most of the time she won't go to sleep. This works only some of the time. It takes about a half an hour to an hour, but I do my best to win her over. Some nights though she just isn't having it.
Anyway... we'll find a way around this I'm sure. We're also watching what we feed her and we're changing a few things here and there to see if that helps with her ability to tolerate her food. As far as her physical therapy goes, she is actually doing pretty well. She is learning how to crawl and can get on her hands and knees. It's been a lot of fun to watch because she looks and smiles at you when she is in crawling position, as if to say, "look at me!" It's so cute I can't stand it.

Enjoy the latest pics my friends. Have a great week!

It's Coming....It's Coming!

2007-08-05T23:45:00.000-07:00

Alrighty there Abby Lovers,

The update will be here by the end of Monday. It's been a long couple of weeks and we're getting adjusted to everything. There is a lot to talk about though and i don't want to even attempt to get into it right now since I'm so tired. I have some GREAT pics though so be sure to check back late on Monday night or first thing Tuesday.

Take care and thanks for your patience.

The Management
Abby Inc.

Getting Adjusted

2007-07-25T07:01:00.000-07:00

Hi everybody,

It's been a crazy week and a half! Thankfully, Kelly's mom and dad and grandma were here to help so that Kelly could recover from her C Section. At first we didn't think Abby really cared much about Eddie. Then she noticed how much attention Eddie was getting from momma and things changed. All of a sudden Abby would start whinning as if to say "Hey! I'm over here!" Every parent of two or more kids can attest to this I am sure. What's funny is that Abby never breast fed but since she sees Eddie on momma's chest so often, she will often spit out her binki and put her head in momma's chest! She will also reach towards Eddies mouth to take his binki because she thinks it her binki. It is all pretty fun to watch.

Abby is getting very close to crawling these days! It's fun to watch her with her new sense of confidence. In fact she has more confidence than skill. She'll reach forward for something and topple over on her left side. Her left arm is still pretty stiff and her brain doesn't tell it quickly enough to extend it out to break her fall. If she falls to her right, she's good. Her arm goes out immediately. But her left is another story. That's okay though because it is getting better.

She hasn't been doing so hot on eating though. Well, let me take that back. Her QUALITY of eating, ie her ability to chew and control the little bits of food we give her is going great. It's her QUANTITY that stinks. She just doesn't eat very much at all. As you know we use the G Tube to supplement what she doesn't take, but for some reason if we give her too much too fast through her G Tube, she throws up. Here's the catch though, the rate and speed that are feeding her through her G Tube is very small. She shouldn't be throwing up because of it. So this is the topic for the week. Why doesn't Abby want to eat very much on her own, and why does she throw up after only a small dose of milk through her G Tube?

We love you all and thank you very much for sharing Abby's stories with others and checking in. I'm not sure if I mentioned this yet, but when everything happened with Abby and she was diagnosed with Hydrocephalus, potential Cerebral Palsy, and poor social and physical skills because of her brain bleeds, the first thing I did was google those key words. I stumbled across some blog sites of other children and their stories of hope and love and it often times those stories really helped. It is my hope that others in my shoes with a little one like Abby will find this site and know that stats, odds, and whatever mean jack.

Anyway, sorry for the tangent. Enjoy the pics below!

FINALLY! The Pics Are Here!

2007-07-16T17:40:00.000-07:00

Check out Abby Kissing Momma's Belly... "Hey little Brother! Can't wait to meet you!"

Check out Momma! At this point, to say that she is anxious for Eddie to come out would have been a HUGE under statement!

Here we are, ready to go into the OR...Man, am I cheesed out or what? Check me out with my video camera! I can't tell you how much I didn't care. I was SO PUMPED!

And here's momma and Eddie, looking like a million bucks of course, happier than ever with her little baby boy in her arms...

PROUD POPPA!

Is he cute or WHAT?????

No seriously, take another look!

Daddy and Eddie working on a poop together...

Here's momma and Eddie the next day. So, did Kelly REALLY Just have a baby? She looks GREAT huh?

Here is daddy gettin'in some snuggle time with Eddie

Here's a close up of some more snuggle time with Daddy

Oh man....!!!!

We're finally on our way home! Check out lil Eddie in his new car seat...

A family shot right before the ride home...

Go ahead...just say it...adorable, super cute, future lady killer...they all fit!

And there they are...FINALLY.

Thank you all for your love and support during these crazy couple of years.

Stay in touch for future Abby updates.

All our love from the two happiest parents on the face of this planet.

Eddie is doing great!

2007-07-15T15:38:00.000-07:00

Well, my lap top took a poop, so the pics will have to wait. Eddie is doing fantastic! Its amazing to watch him eat...without ANY trouble! Momma is recovering well and we are scheduled to go home tomorrow.
This has been a great weekend! As I type this with one hand on my blackberry, I have Lil Eddie in my other and let me tell you, he is amazing.
Abby has been with her Grandma and Grandpa this whole time which has allowed me to be here with momma and Eddie. We miss her terribly though and we are both anxious to get home and see how we do with two!

We love you guys...

Sorry to lag on the pics! I will post some as SOON as I get home.

Edward Ryan Gaya is here!

2007-07-13T10:14:00.000-07:00

He's here!
6 lbs 11 oz, 18 inches long.

And get this.. When Eddie was being born the song on the radio on this fine Friday the 13th morning was Stevie Wonders "Very Supersticous". Awesome! It couldn't have been more perfect.

Oh yeah, he's a handsome little guy too!

Pics coming later..

we're almost there....!!!!!

2007-07-12T21:42:00.001-07:00

We are very excited over here everybody. In less than 9 hours, little Eddie will be here! I can't wait...!

I will post an update from my blackberry tomorrow, so stay tuned!

Yahooooo!!!!!!

Eddie is coming! Eddie is coming!

2007-07-08T22:02:00.000-07:00

So get this... On Tuesday, Kelly had her 2 week appointment with her doctor for her pregnancy with Eddie. As he was asking her how the pregnancy was going she kept saying how she wished she could get him out sooner rather than later. Kelly has been very uncomfortable lately. She even has carpal tunnel in her wrists because she is so swollen and sore from all the fluid. This happens to a little less than 20% of all pregnant women, so it's not the most common thing, but it does happen. And lately, it's been keeping Kelly up at night because it hurts so bad. Thankfully, her doctor told her where to buy some wrist braces that she puts on at night before she goes to bed which seem to work well. The braces keep her wrists from swelling up with fluid.
Anyway, back to the appointment. Kelly's doctor kind of dismissed her requests to move the delivery date up until he realized that Eddie had done quite a bit of growing in the past two weeks. As of last Tuesday, Eddie was already 6 lbs and 12 oz's! Nuts huh? He also noticed that there wasn't much room left for Eddie. So he decided to grant Kelly's wishes and agreed to take him a week earlier than planned. He called the operating room to schedule the C Section, but it was booked up... all except for next Friday. That was the only day in the next week that was wide open. Why you ask? Because it's FRIDAY THE 13TH!!!! I love it....! Thanks to everyone's superstitions, we have a green light to bring Eddie into this world. Kelly and I don't much believe in that stuff, so we said to put us down. At 7AM Friday Morning, Edward Ryan Gaya will be born. Lil Eddie is coming team! Abby's little brother is almost here.

And now on to Abby. After all this is HER blog site. Her G Tube site seems to be doing well. She isn't nearly as irritated with it and it looks like it's healing up well. Her shunt is still working fine too. Sometimes I forget to mention her shunt, but trust me, no news is good news. So if you don't hear about it for a while, that means it's doing fine. And finally, I am happy to announce that Abby has been doing quite well with her eating lately. We even felt that she had eaten enough one time to forego giving her any more milk through her tube. That was basically a first! Speaking of firsts, Kelly is FINALLY off of bed rest we took her out on the 4th as well as this Saturday and she did fantastic. She loves to be out and about. Abby's favorite thing to do when meeting new strangers is to give the "O face." This is the only funny face that she knows how to make and her goal is to make whomever she is looking at to do it too. See below for another shot of the "O Face."

She is also doing pretty well with her left arm. I'm not sure if I've shown a picture of her brace that we put on to help her use it correctly so here is one below. Take note of it's color. Pink...!!! There's a shocker.

Here are my girls at the beach!

And here we are at the 4th of July festivities in our neighborhood. Does Abby look patriotic or what?!

And finally, here are mommy and Abby having breakfast at Coyote Grill in Laguna Beach on Saturday Morning. She loves to be up in those booster chairs with mommy and daddy. She was having a GREAT time here.

Abby certainly has her challenges but she is doing so incredibly well for a baby with a GRADE 4 BRAIN HEMORRHAGE it's unbelievable. I've said it before, but the docs said she was basically going to be a vegetable. That couldn't be farther from the truth. Thanks to you all for checking in again this week... and be sure to stay tuned because Abby's world is about to get even more interesting with the arrival of her new baby brother!

We love you all!

Abby and Eddie's Daddy

We're Almost There!

2007-07-01T21:36:00.001-07:00

As of this Friday, Kelly will be 36 weeks which is where she needs to be before the doctor said she could be off bed rest. She is VERY excited! In fact, Kelly is already starting to ease into her "no bed rest" status and made it to church today. Abby was in a great mood and so was I because I finally got to have my two girls with me at church.

Abby's G Tube is continuing to do well. Her bandages which were covering up the scar from the old G Tube sight came off this week and they didn't look too bad. Over time they should heal up just fine. As far as her eating goes, she hasn't really been blowing us away by any means. And by that I mean that she hasn't begun to start gobbling food up like there's no tomorrow yet. I guess that's what I'm looking for. But Karin, her feeding therapist, reminded us about the smaller accomplishments like how much better she can control little bits of food in her mouth now and how she can take little bites of things like watermelon. She LOVES watermelon by the way! Well, at least she loves to put her lips to it and pretend like she's eating it. She takes little bites and eventually figures out how to chew it and swallow it. And when she's done with the high chair and eating things on her own, we take her out and play with her while we give her milk through her G Tube. That usually takes another 45 minutes or so.
Yep...! It's still quite the task to feed this little one. I'm hoping that her "Daddy's Eating Habit" gene kicks in soon. Once that happens, we won't have ANYTHING to worry about.

Alright, so here's a picture from the last 4 of July. We were in the NICU and a friend of mine got her this outfit.

My what a difference a year makes huh?

And here she is now! Please excuse the difference in lighting on these shots. I was messing with my camera an I changed some settings by accident. No worries though! She is still as cute as ever...

Have a GREAT 4th Of July everyone!

A Quick Update

2007-06-26T07:58:00.000-07:00

Hi everybody,

I'm happy to say that Abby's rash has gone away and she is doing better. The G Tube is working well so far too. We're anxious to take that big tube you see in the pics out and replace it with the button. Scroll down the blog to see a picture of Abby on her back. That little knob on her tummy is the button I'm talking about. Once this is on, life should be easier for Abby. She won't have a huge tube hanging off of her at all times and she'll be able to roll around without any hassle. The only problem is that Abby has to have this big tube she has now for like 6 weeks! it often gets caught on things and tugs on her, which really hurts as you can imagine. She'll tough it out though. She always does.

Kelly is at 34 weeks and 4 days today! Friday is 35 weeks. I can't believe it! The third trimester has proven to be very uncomfortable for her though. Her whole body aches, Eddie is kicking her all the time, she has crazy indigestion, the contractions are very strong now, her hands are swollen and in pain, and that's just the beginning! She has always been looking forward to being off bed rest, and now she is REALLY looking forward to Eddie's arrival!

Have a great week everyone.

Momma, Daddy, Abby & Eddie