2 AM Smile

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

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

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!

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

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

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

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!

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

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!