Monday, December 6, 2010


So on Thursday I typed up a 4 page document about Skyler's development at his 24 month/2 year mark. I figured it would be good to have especially since he'll be seeing a new SLP hopefully soon. Basically it just describes where he's at, the things he's doing at 2 years. Friday morning I got a call from the neurologist's office asking if they could see Skyler on Monday (today). So I asked my coworker if she'd cover for me and she said yes, and I took the day off for his appointment. Suddenly I was glad I had written up that document the day before.

We got there exactly on time, and we got seen as soon as we came in which is always a bonus. I love his neurologist to be honest. He's another great part of Skyler's medical team. I brought him the document that I printed on Thursday and he was of course impressed with how organized we are. He asked us a few questions about where Skyler's at, watched him walk around the room, tested his reflexes and we talked for a little bit. He said he isn't too concerned about Skyler's development. Yes he is lagging a little behind on the speech development, but we agreed that it's probably just the vision thing that has him behind in any areas. It's harder to develop speech when you don't have "normal" vision.

We discussed doing another MRI. He doesn't think we will find too much in the MRI, but we will get a better look at his optic nerves. I inquired about the possibility of his condition affecting his corpus callosum and the neuro agreed that indeed in some people SOD does affect their corpus callosum, he doesn't think Skyler's is affected though. He was surprised that I even knew that, and said that he will definitely look for that in the MRI and let me know if there are any abnormalities. So we decided to go ahead with it, it'll be in about 6 months or so depending on the waiting list. He said we'll be able to get a look at the speech areas of the brain too and check that out, though he thinks Skyler will develop normally.

He said he's seen some patients with SOD who simply have the optic nerve and pituitary problems and develop a little bit slower, but normally. And he's had some patients with epilepsy and seizures and other major issues that cause them not to develop typically. He's thinking that Skyler is of the former and not the latter. Thankfully he doesn't have the epilepsy (so far at least) and he seems to be "coming along quite well" in terms of where he's at in his development. The doctor also asked again what our occupations are, and remarked that we're "more educated than educated people." He is just in awe of us it seems and how much we know about our child and his condition. He told Skyler that he's lucky to have us. Of course we are lucky to have him too.

All in all it was a good visit. I am slightly worried about the MRI as I know Skyler will have to be sedated. The doctor said not to worry too much as he does it all the time, with kids a lot younger than Skyler, and Sky has had an MRI before (at 2 months, or 0 months corrected). It's probably scarier for the parents at this age than it is for him. Hopefully it all goes well. Our next appointment will be when he turns 3. Except after the MRI, he said we can call him to get the results or go in for an appointment if we want, since it would suck to wait 6 months for results. Anyway overall I'm glad his specialists are so great.


Stacie said...

Sky is very fortunate to have you and C as his parents, his biggest advocate. It's nice that his medical team acknowledges that too.

Glad to hear that things are going well for him.

jennohara said...

Hanna had her MRI when she was just over a year, and it was so nerve racking! Almost worse when they're older because they KNOW what's going on. :(
BUT they do them all the time, and she did just fine. I just didn't like the giant IV stuck in her teeny little hand! :D Sky is very lucky to have you guys as his parents! I'm so glad he;s doing so great!