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....
8:30 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!!!!
Monday, August 23, 2010
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!!!
Tuesday, August 17, 2010
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.
Sunday, August 15, 2010
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!!!!
Thursday, August 12, 2010
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.
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!
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.
Monday, August 09, 2010
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!!!!
P.S. I promise there will be pictures tommorrow!
Sunday, August 08, 2010
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.
Saturday, August 07, 2010
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....
pancakes with syrup
Turkey Sandwich with cheese and avocado
bag of chips
cinnamon teddy grahams
wild berry juice
Alfredo pasta with cream sauce
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.......
Thursday, August 05, 2010
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,
Tuesday, August 03, 2010
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.
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!
"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!
Wednesday, December 23, 2009
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.
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.
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.
Saturday, September 26, 2009
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.
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.
Wednesday, August 19, 2009
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...
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,