On Tuesday, Liam and I spent a long rainy day at CHOP. We finally got off the wait list for their Trisomy 21 Clinic after over a year wait! Unfortunately, I wasn't that happy with it so I'm hoping with the next visit, I will see its worth. So many other parents speak so highly of it, maybe it was just a gloomy day.
We met with a doctor and a team of therapists- OT, PT and ST who evaluated and played with Liam on a small mat as the doctor asked me questions about our daily life. He was a little overwhelmed and didn't have much room to move but he still played, and seemed to hit it off with the PT. We received individual evals from each therapist and then the doctor with an overall one. It started off good- he is super social, very strong in his tone and core strength, independent and knows what he wants.
But, there's always a but, the areas we were told to work on were the complete opposite of every other evaluation he has had in the last 16 months. They wanted him more vocal (seriously people?) and less independent- huh. They would like Liam to begin to tell us what he wants versus going and getting it himself. I was a little taken back by that but understood he should communicate more, especially if he needs us specifically but thought being independent was good! I was also advised we needed a lot more "real" words versus mama, dada, baba, moo, etc etc. Again, surprised because he has been babbling and talking since a very early age. When she said most 16 month old have 50 real words and start putting sentences together, I did ask if that was the Harvard track? No smile. Yikes.
From this evaluation, we had agreed to participate in a NIH study called Growing Up and its to help create new DS charts. Liam hasn't fit on those charts since about 9 months old and is 50% on the typical kids chart for both height and weight. We will be followed for 3 years every 6 months. The doctor at the study did tell us that he was one of the biggest so far they have seen at his age, taller and heavier (but proportionate). Then they did a neurological study, checking tone, cognitive skills etc. And funnily enough, she marked him as typical, non DS in every category. I made a comment that she should go talk to the other doctor who told us Liam was only functioning at 8-10 month level, despite all the other groups saying he was on track with his age. Sigh.
Unfortunately, we headed to the labs next to get our immune levels checked next. We have not heard back on this yet, it usually takes a week to two. His blood is tested against a control group as it reproduces, etc. Its very neat to hear about, even better when it does the right thing!
So the entire way home I freaked. Thanks Maureen for calming me down. I know a lot of 2 and 3 year olds. I don't really hear them speak with that many words or sentences and to think that we had been told his communication was his highest and most advance area. I should point out that as soon as we got home, I redid some of the tests with Liam and he did it perfectly for me, whereas at the doctors, he turned away and wanted nothing to do with her.
And the next morning, after a night of being sick, upset, tossing and turning, I went to ShopRite to get some groceries and walked past a familiar looking couple. They looked at me too and we figured it out- our kids were at CHOP at the same time. And as soon as I asked how their daughter was doing, their faces fell and I knew. She passed a week or so after we were discharged last March. It hit me like a ton of bricks and I cried the entire ride home. And then some. I was sad but mostly felt guilt. Here I was worried about one not so great evaluation and they lost their child, a 16 month old little girl who was being taken off breathing vent and it was too much. Do you know how many vents Liam was off and on? It is frightening.
We saw two of our three therapists this week and I explained my concerns and let them read the evals. They all had the same advice- we see him week after week, and have worked with him for a few months- CHOP saw him for 45 minutes in a setting he isn't used to. Trust us, he is fine. And I trust them wholeheartedly. Mr. Mike and Ms. Melinda are Liam's besties- he may cry half the time they are working him out but he exceeds each week and pushes through the PT. And he always gives kisses, high fives and waves goodbye as we leave happy as can be.
That couple has been through more than I personally know and we definitely thought we were headed in that direction- we haven't had it easy but they have had the worst any parent can have. No parent should bury a child, its not the natural cycle. So as I look at my entertaining, expressive, loud and happy Superboy loving life, I can't help but look up and say thank you. He is on his own pace and things can always be worse. Some people have been saying we are so lucky, we aren't Japan, or another disaster but there are disasters close to home too. When a young couple has to bury their 16 month old because she couldn't just catch her breath, that's a disaster. You don't need to look far in life to see reality- via Facebook statuses, blogs like this, the kid down the street. Be thankful for what we have and reach out to neighbors, family, see how you can be of service to them now. You would be surprised how much the question alone can actually help.
