Today was Josh's appointment with the Developmental Pediatrician, Dr. Winters. I really liked her. I never know what new doctors are going to be like and if we will 'click'. Because one thing I have learned in the last couple years is that having a doctor you can just sit down and talk to, makes all the difference in the world. Dr. Winters was great. She sat down and had obviously read through his file beforehand and was very easy to talk to.
We basically talked about Josh's problems all together and how they relate to each other. When you see more than one doctor for things, you don't really talk about the whole picture all that often. When we go to the GI doctor, we don't talk about his neurological problems, ect. So today we talked about all his problems, diagnosis' and how they relate to each other. She provided some good insight into maybe where we are going with him and what kinds of things we can expect. She hopes that we can get the cause behind his neurological disorders diagnosed soon. She agreed with the testing we have coming up (MRI, Sleep Study, EEG, and hopefully Genetics) and said she was very interested to see what we find. The only medical suggestion she wants us to do is to see an Opthamologist. She said that they can actually diagnose some neurological problems that way. So we are going to get going on that. Other than that, she said he looks really good. He is getting all the services he needs and seems to have therapists that are on top of things. She did notice his Dyspraxia and said it was quite noticeable... but then laughed cuz she said she is trained to do that.
The only thing that made me kind of sad was that his head has not grown AT ALL in months. With his Microcephaly and Brachycephaly we should know to expect this. So she is going to suggest an MRI at the earliest time. I am a little nervous about that.
But all in all it was a great appointment and I learned alot of medical information about some of his diagnosis. She just reiterated what I already knew: he will progress in his own way and we can't expect that he will 'catch up' to other kids his age. It makes me so sad for him. I know he doesn't know any different and he is an amazing kid at adapting and working through all his disabilities, but I just wish it didn't have to be like that. I wish life was easier for him, but I also know Heavenly Father has a plan for him and he won't be forgotten.
Out of all Josh's problems going on right now, she agrees with his neurologist that the biggest concern is Josh's Speech. Or lack of to be more exact. But she said he is a classic child with Speech Apraxia, which his speech therapist has already diagnosed pretty much. There is alot of controversy on that diagnosis in general. Some specialists think you can't officially diagnose it until kids are 5 or so. But she agrees with Jill (his SLP) that Speech Apraxia is for sure going on. She said you can tell by his mouth position and the sounds coming out that he is not being able to motor plan orally to form words. So this makes me feel better now about this being a good diagnosis for him. But where we go from here.... I don't know. Jill is coming to do speech therapy with him tomorrow and I can't wait to pick her brain.
So that was my morning. Dr. Winters addressed the stress of having a child that requires so much and let me know I am doing a great job with him. I have never had a doctor tell me that, so I was a little surprised. She told me she has no doubt whatsoever that the reason he is doing this well is because I have done so much for him. That made me feel better and made me realize once again that it is so worth all the time and effort I put into therapy with him. It was a good day. I can't always say that walking out of Doctor appointments with Josh. So hooray for today!!
Happy Easter! (a little late)
1 week ago