Grayson had an appointment with his neurologist this morning- I didn’t have anything specific to talk to him about except vaccinations (which I will talk about in a minute). I most certainly wasn’t expecting the amount of information and new concerns I walked away with. As I’ve said before, I really like this doctor. Dr. R is quirky, good with kids, and is obviously brilliant. Sometimes too brilliant. As in, whooooaaa, slow down, what the heck does what you just said mean? I really need to take someone with me when we go see him so I can take notes- something not really possible with a wiggly baby in my arms. Anyway, here’s what I learned, in bullet points (because I think this is just a bullet-point-y kind of post).
- At our last visit, in June, Dr. R ordered more blood and urine tests. A few days later, the office called, and Ryan answered. They told him never mind, we don’t need these labs after all. Us: yay! No needles! Well, today he asked me if we’d done the labs. I told him they were cancelled. Apparently, that was a mistake. There were a few that they don’t need but the rest needed to be done. He wanted to know who called and when (I have no idea). I told him I didn’t want to get anyone in trouble- I’m sure it was an honest mistake. And it’s not that big of a deal since we don’t have our Genetic specialist appointment until November. But now we have to find a time to go get blood drawn and deal with needles. Before September 1 when our deductible starts over. Yuck.
- Grayson still has his weird toe thing going on as well as something with his thumbs- they go inward to his palm, which indicate more misfiring from his brain (something about one side is too strong and one side too weak, I don’t know; again, this guy talks very fast and uses lots of big words). Possible treatment: Botox (to weaken one side and balance them out). Isn’t that interesting? Maybe Grayson and I can get 2 for 1 treatments! However, we had PT this afternoon and his therapist said she disagrees- she doesn’t think he has the thumb thing. Maybe he was just doing it at the doctor- who knows!
- I knew Grayson was delayed in speech, although this has been the least of my concerns. He isn’t vocalizing consonants, mimicking, or saying Mama or Dada yet. Dr. R wants us to get his hearing tested. What? I’ve always thought his hearing is fine- he loves music, listens when you talk to him, etc. And he passed his newborn hearing screening. But Dr. R said hearing is connected to the brain, along with everything else, and there may be an issue of him missing subtle intonations of the human voice. Ok- well, a hearing test is easy enough to set up. But come on- another thing- can’t my little guy catch a break!?
- We talked in general about his low tone, muscle weakness, and delays. I took a 12 month development survey- to Grayson’s credit, he just turned 11 months, but I was only able to answer yes, he’s doing this to 2 questions, and the survey was 3 pages long. Pretty discouraging. In my head, I often make myself think that I am exaggerating his issues and blowing them out of proportion, then I look at something like that and realize I’m not.
- I asked about vaccinations and if in his opinion we should delay them. He said no- because of his low tone, if he does catch a disease, he’s going to have a harder time fighting it off (I don’t know why that is exactly; this is just what he said). I have been really struggling lately with the decision whether or not to delay Grayson’s next round of vaccinations. I know the risks, and I have two close friends who have vaccine injured children. Honestly, that scares me to death. I know vaccines are a complex, hot button issue- I just want to do the right thing for my child and his health. If anyone reading this has a child with neurological issues and/or developmental delays and could share their thoughts on vaccinations, I would love to hear from you!
- In the same conversation about vaccines, Dr. R brought up seizures again and that Grayson is at a much higher risk for them (see why I’m freaking out about vaccines?) He said if he does have one and we go to the ER, for us not to let them tell us that it’s just a febrile seizure (the kind that kids with high fevers get) because Grayson fits into a different algorithm than that (see? he loves using big words!). To my knowledge, Grayson has never had a seizure- let’s hope it stays that way!
So, a lot of information today. I’m really doing ok though- I feel like Dr. R is trying to fit together pieces of this puzzle, and I have high hopes for our Genetics appointment in November. He did say that Genetics will look at Grayson in a totally different way than he does, that it’s a dance between neurology and genetics- and they will go back and forth with new and different ideas. We see him again in December, unless the blood work comes back with something that needs to be addressed sooner.
I hope I remembered everything- I really should have taken notes!