There's No Place Like Home

Picture is of Liam after his bath tonight- he weighed in today at 11 lbs, 9 oz and is back to the 50% growth percentile!

We have been home three weeks and its been a whirlwind. My little brother Ryan met me at CHOP and drove home with Liam and I- he was officially on Gloworm duty for the ride..poor Uncle Ryan. Alex and I were definitely overwhelmed the first few days- there were 15 doses of medicine a day plus 2 shots we had to give him. And the medicines couldn't be given together so our first few days we gave medicine from 8am-noon, then 6pm to 2am. Yawn. It sucked for Liam, we had to wake him up in the middle of the night, give him a direutic and then the little guy would be upset with a wet diaper an hour or two later. No one was sleeping well, including Ike our dog, who has become very protective of his little brother.

After we settled in, things became more bearable. We spent most of the first day home at the doctor's office and then the hospital getting bloodwork drawn. Later, we saw our cardiologist locally. The last few weeks have had ups and downs- medicines have been stopped and started again; one ER visit at 2am on a Monday morning almost became a huge setback and ended up being nothing. Mostly, its been a lot of time in a doctor's office (3-4 times a week) or having a home health nurse visiting to listen to his lungs. The biggest concern for his recovery is making sure no fluid comes back to his lungs. So far, he has done great in that area.

On March 19, we went back to Children's Hospital for his follow up with cardiology and a few other specialities which will follow him. We got another all clear and were able to spend some time seeing the friends we made while we were there. Everyone's kids seem to be doing well which was great to hear. One family was hitting a lot of complications and I would ask all reading this to say a quick prayer for Luke. He and Liam shared a pod area when Liam began going through his major set backs, and his parents were supportive shoulders for us to cry on.

It was a great trip, especially because his doctors who saw him were surprised by how good he looked. We were able to visit and meet new family members that weekend at my Mom's house, Sean and Tommy, Julie and the boys, and Aunt Joan, Uncle Harvey, Carol Ann and John and then at Jeanette's baby shower, we met Cara, Aunt Joan, Craig, Jeanette, Rachel and Nani. Great trip to NJ.

While it was great for him to meet everyone, we stll have to be very careful with him. During his drainage issues, his thymus gland was effected. This gland produces specific cells which fights infections- opportunistic infections (rare ones we all fight but because his defense is down, a common cold would become pneumonia in a short amount of time) So, he is now considered a low immune deficient child. Until those levels get higher, he is on a preventive medicine to fight infections. If he happens to have a fever, we need to rush him to the ER so they can make sure that it isn't anything serious. Luckily, he has shown no signs of this so far but we are also still keeping him very much a bubble boy. If we do go out, he stays in his stroller or only held by us or a close family member after using hand sanitizer. Its just the smart thing to do, especially since its still flu season.

We are finally able to breathe a little bit and enjoy the small things- I took him to his first Gymboree class this week and he did great the first 30 minutes, laughing and playing. His therapist has been by a few times and he is doing pretty well despite having laid on his back for 6 weeks and unable to move. Liam is beginning to hold his neck up for longer periods of time and starting to roll a little bit. In fact, he is pretty strong compared to where he should be.

I'm looking forward to a quick and hand sanitizer filled trip to the Easter Bunny in the next week. We will post that picture soon. I am working on a Liam hospital online photo journal and will share that when its done. There were quite a few days where we didn't post, pictures or updates, and that was simply because we thought we were going to lose him. Looking at the pictures, its amazing we didn't. He is resilient and joins a ton of other babies who fought back. And we couldn't be prouder.