Intrathecal Trial Update – after 6 doses

Posted Thursday June 02, 2011 by Melissa

From the fullness of his grace we have received one blessing after another. John 1:6

That is how I feel every single day. As someone undeserving of such incredible blessings that continue to be poured out on our family. Sometimes I think that there couldn’t possibly be more, that the goodness will and should be spread around more to those families I know that are hurting. But still God is incredibly gracious to us and gives us way more than we deserve even though sometimes we try to hold onto parts of our lives that are less than what He would have for us. If you’ve never read the story of the pearls, it is an incredible example of this.

Castle play

Case playing on the UNC campus in his "castle"

So I was hoping to wait to update until after next month’s visit to UNC because Case will have end-of-study testing that will include cognitive testing again (technically, the study lasts 6 months but as long as testing continues toward FDA approval, Case continues to receive the drug). Next month, he will have the same procedures he had to qualify for the trial – brain and c-spine MRIs, bronchoscopy, ABR (hearing testing), lumbar puncture, and cognitive, motor, and independent skills testing. He will have those same procedures every 12 months and cognitive testing at UNC every 6 months at least for the next 3 years.

BUT, things are just too exciting around our house to wait. Case is doing so incredibly well and it just seems like he’s made another leap in understanding similar to the one he made after the very first dose. Last Sunday (after IT dosing on Tuesday), we were able to take down the baby gates at the hotel and let him walk into the hospital for his clinic appointment on Monday. Prior to that, the gates and stroller were necessary because he was climbing everything, not compliant in instructions, running away, getting into all the drawers, grabbing things, etc. This had gotten slowly better since the trial started, but this time represented a milestone of allowing him to be independent and not being worried he’d kill himself or drive you insane.

When we returned home, school was out and starting Tuesday, we stopped closing the baby gates that exist all around our house. I was even able to make dinner last night with him freely playing around the house! I couldn’t believe it! I thought, “Wow, this is how families normally do this!” Before this month, it was still concerning to leave Case in the gated playroom while I made dinner upstairs.

Case playing with his new Little People house

Playing with his new Little People house

The things Case is saying and understanding, his ability to play with his brothers again (okay, so the hitting still happens sometimes, but that is not altogether unexpected in a house of 3 boys), he is counting to 11, spelling his name, identifying some letters, counting up to 5 objects now (with 1-1 association) – it all boils down to him just seeming more “typical.”

Oh, and the things he thinks he can do now! He has stopped telling me he has to go to the bathroom and just goes in there and goes! Now of course, this results in a mess sometimes because he can’t do everything by himself, but still! He thinks he can make his own chocolate milk too. He watched me the other day and then yesterday climbed on the stool, told me he was going to make it, and proceeded to do just that (with help, of course)! He thinks he can swim as well…. He wore floaties at the pool and I held him because he’s so heavy that he would still sink, but he kept telling me he could swim by himself and tried to get away!

Sometimes I just shake my head that this is happening. I almost can’t believe it. Oh ye of little faith, having prayed for a miracle but still surprised when God answers you.

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