As Sam gets older, I find it harder to share about what’s going on with him. Although nothing that I share should embarrass him, it is so innate to want to protect him from everything. There are so many layers to his health, and our life, that it’s daunting to even know where to begin.
It dawned on me the other day that I have been in a constant state of stress since finding out we were having twins when I was 6 weeks pregnant. Constant worry about their health, how we could afford two kids, and then… holy crap, my kid has what?! Things have just continued to be overwhelming, and it doesn’t seem to be going anywhere anytime soon.
I alluded to Sam’s ongoing issues in my previous post, but wanted to delve deeper into them now. This serves more so as my own personal diary than anything, but I know many of you are interested in this crazy life of ours.
Some of you probably remember from Instagram that Sam is now on growth hormone therapy. He has been working with endocrinology for about two years, and in September 2018 we officially started the shots. He does incredibly well with his daily injections, and it is now just a part of his life. We are not sure how long he will need to be on the growth hormone, but most kids his age are on it an average of 2-3 years. His endocrinologist is very pleased with how he has responded to it, so we are very encouraged!
This summer, we had some testing done by a pediatric neuropsychologist. The only reason we did it is because we hadn’t had a formal assessment done of Sam since he was 4, and “they” recommend a new assessment every four years. The assessment confirmed his diagnosis of Autism Spectrum Disorder, but also showed that he had dyscalculia (think “math dyslexia”). We were also told vision therapy would be a good idea because he had focusing problems. What can be done about dyscalculia? Not much, unfortunately. Thankfully Sam is already on an IEP and we will just continue to teach him as much math as he is able to comprehend.
As it does for everyone, life got busy. We weren’t able to schedule an appointment for vision therapy and then we found out our insurance wouldn’t cover it. I decided to push it aside for a while, and come back to it once I started to get insurance involved.
In the meantime, Sam began showing symptoms of something larger going on. Without going into too much detail, we had to get Sam an MRI in late August (the second day of school actually) to rule out a brain tumor. Thankfully, the scan was negative for a tumor, but showed something quite startling – his corpus callosum is incompletely formed. In layman’s terms, his right and left hemispheres are not connected. Dysgenesis of the Corpus Callosum is his full diagnosis; I found the below from a website that describes Sam perfectly (aside from hearing impairments):
Physical or health-related characteristics include:
- vision impairments
- low muscle tone
- difficulty feeding
- abnormal head and facial features
- high tolerance to pain
- problems sleeping
- hearing impairments
- chronic constipation
With this new knowledge, we were able to get Sam’s IEP modified – his education team is so phenomenal it wasn’t an issue, but it is nice to have it in writing.
In early November we saw our pediatric optometrist. This was originally Claire’s appointment, but Sam had been complaining about not being able to see well so I switched it to Sam. This was his third eye appointment in eight months. At this appointment our doctor told us he is rapidly losing vision and we need to see a pediatric ophthalmologist. I love our optometrist, and he could see the nervousness in my face. He basically said, “Listen, as a parent I get why you’re so nervous. And as a doctor, I’ll also tell you you have every right to be nervous.”
The earliest we could get an appointment was the end of December. Thankfully this hasn’t been causing us too much anxiety (sarcasm). We will likely also push for a repeat MRI to see if his hydrocephalus is continuing to get worse and could thus be the cause for some of his symptoms. Only time will tell, and we are used to the waiting game.
Send up all your good vibes – this kid has been through so much and we are quite overwhelmed with all that’s going on still. Somehow though, he manages to be our easiest kid… despite having autism. Life’s funny like that 😉