CHOP Bound this weeek

9/11/10 in Gettysburg, PA

So this week, we head up to CHOP for two days to meet a few specialists. On Thursday, we head to Immunology and sit down with the doctor to review Liam's previous labs and try to determine what is happening. From what she told me on the phone, its going to require quite a few blood draws and actually putting his blood in a lab for several days. Doctors will watch his blood to see how it produces, splits, builds, etc and they can then determine if it is a result of function or reproduction. We did learn that the gland that produces immunoglobins was actually removed during his open heart surgery but from the research I found, that typically doesn't affect it later on. The body should have all the immunities it needs when you are born.

On Friday, we need to meet with the ENT speciality group. When Liam was on the breathing tube and CPAP machines during his chest drainage, his nose got beat up both on the outside and inside. He has a scar along the bottom of his nose on the outside but internally, one nostril is slightly flopping over and much smaller than the other. I hope this is something that is ok- he hasn't had breathing issues outside of typical DS concerns. If not, it may require surgery.

While we are at ENT, we need to have his hearing test. We had it done here about 3 weeks ago and for whatever reason, on one of a handful of tests, his left ear couldn't be read. Unfortunately, it was the test that can determine hearing loss and it wasn't a fail or a pass. The doctor told me she thought his hearing was fine, particularly because of the other tests and that he hasn't had any ear infections so far, but she thought it would be smart to ask CHOP to take a look too. Fingers crossed it isn't hearing loss already. A lot of DS kids do have some but with the way he interacts, talks and wakes up when I walk past his room, I'm hoping its not the case.

There are so many parents in worse spots than this but I think living alone with Liam before these appointments is making me get inside of my head too much and anxiety might be creeping up on me. We had 10 weeks of hell and months of eggshell living. I just can't imagine going through more issues and I admire some amazing friends who have gone through it, over and over. I don't think I'll ever relax around him and I don't think I'm supposed to. The immune issues are the most worrisome. I really don't want to be a bubble again, and the last few weeks, we stepped backwards a little and played it safe again.

Well, thats the update for now. I think its going to take a few days/weeks to get answers on the immune system but the important thing is to get an answer for the cause, especially before the flu season.

CHOP Results

Well the news wasn't what we wanted to hear- all three of his labs came back slightly outside of the normal range. Of the three, his hemoglobin was already re-tested back here in VA and its now back to normal but we need to keep him better hydrated with additional water/juice throughout the day because once this guy falls asleep at night, he doesn't wake up!

His thyroid function is slightly hypothyroidism and the attending endocrinologist at CHOP said if he was 3 or 10, she wouldn't recommend medicine because the number is just slightly above (range goes to 3.8 and Liam was a 4.4) but because the first two years are all about neurological development and this could effect it, she wants to play it conservative and put him on a small dose of Synthroid daily until he is 2. Sigh.

And then the worst news was his immune labs- he went down in the majority of categories which is surprising. We were expecting a slight increase since more time has lapsed since the surgery and the chest drainage. His numbers are back down from where he was in May. The most concerning news is that they just don't know why. The immunologist did have some questions for our cardiology team and we scheduled an appointment for September 23. In the meantime, he is going on Bactrim which helps fight against infections. The concern is a common cold could spell pneumonia for him and he needs protection against it.

For anyone who knows me pretty well, waiting until September 23 was just not going to work so instead, I reached out to our CHOP Cardiology team asap and got some answers to the puzzle. The one big question was if during the surgery his thymus gland was at all scraped or touched since this makes and houses your antibodies. Well...it was completely removed! We hope this will provide more guidance in how to treat his immune system. The good news all the other questions were no's and less to worry about. CHOP is going to do a study on Liam's blood cells and see how his cells function and reproduce. Their team is determined to get a health treatment plan in place before winter really comes along with all the sickness.

In the meantime, I have been a part of this terrific Mom's playgroup and Liam especially has really enjoyed the social and play aspect but I am going to have to cut back on the interactive stuff for him right now until we know what is going on with his health. I am going to try to find a middle ground for us to do some things and not others. He won't be happy but he will be healthy, which is what we want.

Here are some more recent pictures of our adventures:

CHOP Buddy Walk

We are going to be participating on October 3 at the CHOP Buddy Walk and hope you can join us! Here is the link to our site- please consider spending the day with us and bringing the kids out too! It is a family fun day and there will be lots of activities for all!

http://giving.chop.edu/site/TR/Events/BuddyWalk2008?team_id=6462&pg=team&fr_id=1190

Can't wait to see you all on October 3rd, we will have a ton of camoflouge gear for the team!

Sea Isle City, NJ Pics

From our very much needed week away with my family. Liam loves the water and the beach was no different. This was the last week of July.

9 month checkup!

Liam had a great 9 month check up on August 13th. He was 18 lbs, 12 oz and 27 1/2 inches, which puts him at 25% for height and weight on the typical chart and a shocking 80% on the DS weight and 60% on the height scale. To say Liam likes food is an understatement! We were at CHOP on Tuesday for bloodwork to check his immune levels again, thyroid and hemoglobin- this is a new concern. At his check up, they drew blood and this level came back abnormally high. The doctor said he might have been a little dehydrated because he hadn't had a bottle since the night before (we were there at 7:30am). Hoping the re-test results show a more normal reading. Our therapist said at our last session that there is a normal curve for DS and a lower curve underneath that for kids who have had open heart surgeries and Liam is well above both, which made us happy. He refuses to crawl, only holding himself up for a few seconds. It may be his chestbone healing still or that he just has a weakened strength there because of his hospital stay, but the goal is crawling over the next few months. In the meantime, he sits, rolls and is trying to sit up on his own. We are working on the core strength still so his arms and legs can get stronger for the crawling and standing. When he stands now, he is curious about his feet and puts his head down to watch, and begins to fall forward! Its cute but not getting us closer to hitting that milestone.


And our ltitle man has made his Dad very happy because his first word of course is DA DA. He says it all day long...to me, MA MA, which I am patiently waiting for. Sigh! It is adorable to hear his voice past typical babbling.

This was created by another CHD Mom who is a graphic designer- thought I'd share my little hero's CHD tag!

Its Officially Summer..and way too hot!

We've had an exciting two weeks- after Liam's baptism, he began hitting a few milestones pretty quickly. He now likes to roll from back to stomach and on his own, this was a big one for us! And when he is in the sitting position, he can hold himself up with his hands on the ground. Its a great milestone and the therapist was really excited for us. We are practicing everyday and he continues to get stronger with his coordination. Liam does get very frustrated though when he cannot move, he tries to crawl, climb, move...we have gotten to the point of not being able to turn our back.

Liam is also now eating-his favorite so far is sweet potatoes! And occasionally he will hold his bottle and feed himself which is a great help for me when trying to multi task. Of course, all this eating has helped him gain some weight, he is now 16 lbs, 1 oz. In the 70% percentile on the DS chart..its hard to remember the 5 lb baby we were so scared to hold!

We haven't sold the house yet but are hopeful its coming soon- if you know of anyone looking to move around northern Virginia outside of DC, let us know! Living apart has been pretty hard for us, more lonely for me. We are alternating weekends and driving up and down 95 is getting old, especially as I start seeing the turtles on top of SUVs and families together heading to the beach.

In some great news, one of Liam's CHOP friends, Makenna had her open heart surgery last week and is doing great. She went home last night- another success at CHOP! We hope to reunite the little ones this summer at the Jersey shore and let their romance blossom :o)