I can't believe how long it's been since the last post- I never even put up his birthday pictures! Not much to report health wise with Wyatt... he is still eating a decent amount of his calories by mouth (about 50% g-tube/50% oral). He still loves mac n cheese, hot dogs, and strawberries- typical 2 year old food. We were able to stop his overnight feeds through the pump, making our night routine a lot easier. We were even able to finally move him out of our bedroom after 2 years. He and Ryan are now sharing a room- something they were both really excited about, "super cited" as Ryan said. We met with Surgery and Nutrition this week after a 2 month break. They were pleased with him overall, but disappointed in his weight as usual. He is still hanging around 22lbs... gaining a few ounces since his last appointment. We are going to try to add a little formula back in to see if we can get some meat on his tiny little bones. It's hard enough to get enough calories into a kid with CDH, but he does not sit still for one minute. It would be hard to find a more active kid- he is constantly hanging or climbing on something in the house.

2nd Annual Ronald McDonald House Dinner

Wyatt's 2nd Birthday Party

Neither one of them has a clue how to steer that thing!

"Happy to you"

His new favorite hiding spot

Taking a little juice break

Trimming up his birthday mohawk

Ryan's family portrait- so cute! Yes- she wrote Carrie, not Mommy... no idea why.

So proud of her work!

Finally a nice enough night to dine outside

... or stand on the table!

Tough guy!

Hanging out in the house!

Strutting his stuff in the cul-de-sac with nothing but his favorite socks!

SO excited to visit her school this morning- getting ready for her 1st day of Pre-K on Monday!

Wyatt eats!

Who would've thought a virus would be the best thing that's happened in a long time... Wyatt had a nasty stomach bug last week. We did the same thing we do every other time something like this happens- cut his gtube feeds to pedialyte and slowly work them back in over the next couple of days. He basically went 24 hours without food, just pedialyte to keep him hydrated. The next morning he woke up, sat at the breakfast table with Ryan and tried to steal her blueberry waffle. He sat there saying "waffle", "cereal"- "juice"! He was finally feeling what it was like to be hungry and understood what it was. He ate half the waffle, a handful of cheerios and his juice- the most he's ever eaten! The rest of the day went pretty much the same way- he kept asking for food and ate most of what we gave him. I waited until the end of the day to email Robin (his nutritionist at CHOP). I gave her the rundown and at the end of my email I asked her if we could just go with it for a few days and see what he would do. She ran it by Dr. Blinman and called me a few minutes later, laughing at the fact that once again Wyatt has done things on his terms- the same kid that required TPN only a few months ago. They agreed to give us a week.
We had him weighed the next morning to determine what he lost because of the GI bug, not because of the drop in feeds. It was a good thing we did- he lost about 8 oz in 2 days. He continued to eat a ton (for him) over the next week. This past Friday was the official weigh in. We were really disappointed to find out that he lost another 9 oz. or so, bringing him back down under 21 lbs. A reminder of how many calories kids with CDH need! We thought he had to be getting the calories he needs, but it only ended up being 60% of his daily needs when she calculated his food journal. They were thrilled with his progress, but obviously not happy with the loss. We ended up having to add 3 of his gtube feeds back in. Disappointing after 10 days without the tube, but still much better than the 7 feeds we were giving him a few weeks ago. It's pretty crazy to see him go from being 100% gtube dependant to 40% in a matter of a few days. Today was the 1st full day we added the tube feeds back in and it doesn't seem to have affected his appetite. Let's hope we found the right balance for now!




Ryan celebrated her 4th birthday a few weeks ago. A big deal for us because it meant no more bloodwork appointments every 6 weeks! Four is the magic number when it comes to Hepatablastoma- we no longer have to screen her for this type of cancer! She will still go every 12 weeks for ultrasounds to screen for Wilm's Tumor, but even those are shorter (no longer looking at the liver) and she doesn't have to fast for them either. I think she's actually going to miss them- she loves going to "the big hospital" for her "baccinations". She gets lots of special attention, gets to pick out a special bandaid and sticker and usually gets a treat at McDonald's when she's done- what's not to love.


Onward and Upward Day at her preschool

Wyatt had a full day at CHOP yesterday. We got a call a few weeks ago asking for our participation in a new research study they are doing. They are looking more into the anatomy of the lungs of CDH babies, and whether or not they would benefit from certain medications to improve their lung growth/function. Unfortunately they weren't able to get most of the information they were looking for yesterday- Wyatt woke up in the middle of the test. We're hoping they will be able to change the protocal a little and let us come back for the rest of the test in a few weeks. He did get a good report from the Pulmonologist though- his lungs are functioning a little better than they were a year ago. He still recommends using the 2 inhalers twice a day. We also had a great appointment with Cardiology- his ECHO and EKG looked really good.
We came up with a plan to try to get him to start eating a little more by mouth at our list visit with Dr Blinman and Robin. At this point he is still getting almost 100% of his calories through his g-tube. The 16th of April was his 1yr g-tube "anniversary". It's a little disappointing to still be relying on the g-tube for all of his calories at this point, but hopefully the changes we are about to make will improve that. We are going to try to eliminate 2 of his bolus feeds during the day. That leaves him with the 3 he gets overnight and 2 more during the day. We are going to try to give him the 2 daytime feeds while he is napping so he's not aware of any of the feeds going into his tube. He's definitely really full from all his feeds through out the day but we are hoping some of it may be psychological, and if he doesn't see them he won't know he's being fed. He's at the point where if you tell him it's time to eat he lifts his shirt, rather than sit at the table. He will have to get a weight check at the pediatrician in 2 weeks. As long as his weight doesn't plummet we will keep trying until his next appointment in June. We also started talking about a feeding program in Hershey. Most kids have great results from their program, but we are really hoping we won't have to do this... cross your fingers for a good appetite!

Just pictures this time...

Wyatt is ready for bed when he climbs up into the chair with his "pac" and "moon" - his new favorite book Goodnight Moon

Poor Nash

One is not enough sometimes!

Hide and seek- our favorite game

A bunch of pictures from the last few weeks...


He will make himself comfortable anywhere when he is ready for a nap!


Someone got into my eyeliner

Nap time again

He loves her baby stroller!



His 1st shiner... I don't think a week goes by without a good fall




It's been fairly uneventful the last few weeks... not much going on other than a couple of follow up visits. Ryan met with her Oncologist at CHOP's Cancer Center a couple of weeks ago. She receives all of Ryan's blood work and ultrasound results every 6 weeks, but we go check in with her every February. It's not one of my favorite appointments to go to. It's sad to walk into a huge room full of kids and their families and know why each of them is there.
Wyatt also had his 18 month well visit at the Pediatrician last week. He pulled out all of his tricks for Dr. Nicholas and was given a good report. He also got his last synagis, thanks to him for going out of his way to come up with one. Hopefully his next appointment at the end of the month with Dr. Blinman will go as well.

Wyatt had his 1st Neonatal follow up appointment last week since leaving the NICU. He should have been seen by them a couple of times by now, but all of his complications have kept him from following the normal PHP (Pulmonary Hypoplasia Program) appointments schedule. They were really pleased to see how well he's now doing, given his extensive history since his rock star recovery in the NICU. It's always interesting to meet a new doctor... Wyatt is never what they expect him to be when they look at his history- his chart is pretty impressive. He went through a full developmental evaluation (a series of "tests" with a Psychologist) and another evaluation done by their Pediatrician. Overall they said he's doing really well in his development- "cognitive, receptive language and fine motor skills are in the average- low average ranges." They feel he has a mild delay in expressive language and told us to encourage word approximations before giving him what he wants (he points and makes noises at things most of the time rather than using words). They also gave us a baby signs book so we can start signing with him for certain things. We weren't really surprised to hear this- he has a big sister who never lets him get in a word. He's pretty quiet, but he uses words when he wants to. He'll get there. They want to see him back there in about 6 months- they will probably recommend Early Intervention services if he still shows a delay.
Wednesday morning was also his last session with his Early Intervention therapist. She came out with the coordinator of services for a review and they decided that there was nothing more they could do for him right now. They feel that his feeding issues at this point stem from the fact that he never has a chance to feel hungry because of his g-tube feeds. He's definitely getting better as far as trying things and picking at his food a little bit. He will put little pieces of whatever we are eating in his mouth, but he still has a hard time actually chewing them up and swallowing them.