It hit me in a unexpected moment. While watching Max and Andrew interact at the eye doctors office this past weekend (we were there to get new glasses for Max), it became clear as day the distance Max still needs to go just to catch up to his own age. For a long time the boys were the same in so many ways, or at least close when it came to development, but now Andrew has sprinted far ahead. Or maybe it’s more that Max slowed down to a walk. Either way, it was a moment of clarity, because for the first time the difference seemed so tangible. I found myself just taking a moment to think about it. While Max is making progress and we like to celebrate the little victories, it suddenly became clear to me just how long the road ahead of him still is.
So even more reason to be excited that we are seeing Dr. Goldberg. Max has made noticeable progress since our visit to CA. The two biggest changes we see are that he is becoming more verbal by not only saying more words, but starting to put together sentences better. We’re getting more eye contact. But not just more eye contact, eye contact that really shows a sparkle in his eyes. This past week I when I picked him up to school he looked at me in a way I’ve never seen before, with a bright sparkle in his eyes and a smile, and said “Hello Daddy. Mommy at work?” He then gave me a big warm hug and walked with me to get the other kids. To most parents this sounds like no big deal. But what is more typical is for him to get mad when he sees me there for him (instead of mom) because he doesn’t like changes in routine, he throws a tantrum right there on the floor in front of everybody, and then starts in with his OCD tendencies. He loves to run into any room he can and flip the light switches on and off, or go for the bathroom and either use the sink or flush the toilet. That doesn’t happen every time, but you never knew for sure what to expect.
Another big changes has been the way he wakes up in the morning. In the weeks leading up to our trip to CA he would wake up at his usual time (between 5 and 6am) and before he was awake 30 seconds he would be mad about something and yelling. Let me tell you, when you yourself are just jumping out of bed from a dead sleep, it’s no way to be greeted in the morning. But now he wakes up smiling, he says hello and if you’re lucky will even sit with you on the couch and just snuggle.
Not only do we see the positive changes, but others do as well. Both at school and in his therapy class teachers have commented that they have noticed he’s calmer, talking more and participating more in group activities. All of these are things that have been a challenge for Max.
He still has his moments where he can’t keep it together, and we had one of those this weekend too while out at the park. He wanted to walk instead of riding in the wagon, but at one point we just needed him to sit in the wagon but he kicked and screamed as we put him in, and then screamed almost all the way back to the van (a nice 10 minute walk through what is otherwise a nice quite park). Yea! Fun at the park! 🙁
About a week ago we had our first conference call with the Dr to discuss test results and the weekly reports that we send to the doctor. He was also able to answer questions that we had and start us down the next phase of the treatment.
Max started a new medication this week (in addition to his current one) and once again we’re seeing small improvements. We are also getting more blood tests done (this will be a regular occurrence to keep him closely monitors) because the last round of tests that we did while in CA showed that he may have a thyroid problem. It will take another test to tell for sure. It’s also possible that the stress of the trip and the fact that he was sick for part of the trip to CA had thrown the test a bit. But that too is something that will need to be addressed if it is in fact a problem.
This Wednesday it will be 7 weeks since our trip to California to see Dr. Goldberg. What’s important to me is not just that we’re seeing improvements, but that he’s being treated in a very thoughtful and measured way. Dr. Goldberg is following a protocol that he’s been refining for over 20 years, but at the same time he’s taking into account that Max is a unique child and needs any treatments customized for his needs. Max will not be recovered overnight – it’s a long journey . But I do feel like we’re onto something good with Dr. Goldberg’s treatment.
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