Friday, March 28, 2014

William update

One cool dude

I did not update after William's Dr. appointments because all the information we were getting was a little overwhelming. A month later and it is still a bit overwhelming. So at his Dr appointment we discussed his delayed walking, his large head, his snoring, and the Dr. discussed him having a speech delay and that he was small (both of which we were not really aware of).
So he had blood drawn to check for some normal stuff for his age, and then some other stuff that could be causing his small stature. He was checked for celiacs which he does not have. I didn't think he did. I wasn't sure that just being short and skinny was enough to have it, but as long as they were taking half his blood anyway, what was another test.
Next was an MRI. They wanted to check and make sure he did not have fluid in/around his brain, which would explain his bigger than average head. He had to be sedated for the procedure, which meant fasting. He is not a happy boy when he is hungry, but who is really? He had the MRI done at Children's hospital in St. Paul. We are so fortune to have so many options so close if needed. MRI came back normal, no fluid and nothing to be concerned about, well except his very large adenoids.
That brought us to ENT. For the past several months William has been snoring pretty badly. He has woken himself up several times because of it. I had not really noticed if he had been pausing with his breathing at night, but I knew that something wasn't quite right. The ENT confirmed that his adenoids were so large that they had created almost complete blockage of his nasal cavity. No wonder saline and a booger sucker didn't really clear up his "stuffy" nose. Luckily the ENT did not think his tonsils were an issue, but did suggest removing the adenoids. We were to meet with audiology in a week or so, so we waited to schedule the surgery in case he needed tubes.
Audiology- because William is speech delayed they wanted to make sure he was hearing ok. Part of the enlarged adenoids  can also cause muffled hearing. Luckily this is not the case for William. His hearing is almost perfect. So we have his surgery scheduled for June to have his adenoids removed.
His walking- William had a PT evaluation done at Gillette in St. Paul about 3 weeks ago. About a week after that evaluation he has made huge improvements in walking, and hasn't even started his therapy yet. (Starts today!) He is now walking short distances independently and will walk holding a hand or finger for longer distances. He still prefers to butt scoot when he wants to get somewhere fast, but he has starting asking to walk places. I am sure with some physical therapy he is going to be cruising passed this milestone.
Neurology- We met with a Neurologist earlier this week to make sure that there isn't any other brain issue causing his gross motor delay. He did not find any "red flags" while checking out William and looking at the MRI. We do need to get a blood test done to check muscles (I guess it can be done via bloodwork?!) and possibly test for fragile X syndrome. He isn't showing a ton of signs that would point to that, but because he is a boy and has motor delay, the Dr wants to check for it.
So what's next? William starts physical therapy this week. It has been mentioned to have him in speech therapy but nothing has come of that yet. I am not sure if someone is going to contact us, or if we have to contact them. I have been waiting to go to his first PT. I wasn't able to go to his evaluation, but Matt did and I think some information may have been lost in translation. There is a lot going on and a lot to take in and we almost have to both be there all the time to catch what the other person misses.
I am very happy with the improvements that William has already made in his walking and I am guessing the PT will be as well. He is very proud of himself. Our lives have been crazy and our calendar is full, but it is good to get this done with now. Hopefully I will be a little better posting updates about all of this.


  1. Good luck, little William! It sounds like he might just be taking his own time! :)

    1. He has his own schedule, that's for sure!