We're coming off of about two months of...meh. I can't put my finger on what exactly was the issue but we're finally up and running again, literally and figuratively.
We visited the eye doctor last week. We weren't supposed to follow up until September, which would mark a year since the last eye exam, but with the use of the new seizure medication (Vigabatrin/Sabril), we were required to get a recent eye exam. We were required to do this because one of the possible side effects to using Vigabatrin is tunnel vision or a type of glaucoma. The doctors will use this eye exam to monitor Christian's vision as best they can.
The eye exam went really well. The doctor commented that Christian's vision has improved since September and he was able to track more and had more purposeful looking. The doctor was extremely thorough and explained what the side effects may or may not be with Vigabatrin. He said he learned that those side effects are usually present at the onset of the medication or in the very beginning of use. And there are physical signs like hard eyeballs signifying high amounts of pressure on the eye and runny, red eyes. So far, Christian looks fine.
And, by the way, we increased the Vigabatrin about two weeks ago and all's well. We have had a few episodes at best but no jerks throughout the day. We'll follow up with neurology on Friday.
Speaking of vision stuff, Christian's vision therapist referred our family to a professor at the University of Arizona (Go Cats!) who teaches vision. She's holding a class for her graduate students about vision impairment in children and asked if we'd be willing to come in and help teach students for the day about cortical visual impairment. I thought it was a GREAT idea! Seriously, any opportunity to teach others, especially when it may help other kids in the future, I'm on it!
Well that meeting led to another meeting with another professor at the UofA. I received another call from a professor teaching an introduction to visual impairment class. She asked if I'd like to be on a parent forum sharing our story and allowing students to ask questions about Christian. Again, OF COURSE I'd like to do that. You all know how I love sharing my baby's story!
On the subject of tummies, we had our first appointment with our GI doctor today. With Christian's vomiting, it never occurred to me to visit a GI doctor. I really thought, what could they possibly do to make him stop? You know, cuz I know everything, right? And with the Vigabatrin, which has GREATLY reduced his vomiting, I thought maybe I didn't even really need to go. Again, because I know everything.
Well, I'm so glad we went. We really hit the jackpot of information. Not only is our new GI doctor extremely knowledgeable in what he does but he's also a nutritionist! I've been looking for one because I'm so in the dark about supplements. I mean I've done my research, but I have gotten no useful information from professionals. He's also not a fan of medication if we can help it. He earned more points for that.
Coming up we have a blood workup to test for any deficiencies. I've been wanting to do this forever! He'll also test a few other things like protein and iron. In addition, we're going to do a swallow study. We had started with tasting and were gaining progress but when we started the Vigabatrin, it not only relaxed tone but also his sucking and swallowing. So it's not as strong as it was and I can see that simply by the way his mouth is moving and his drooling.
I still want to get a swallow study because I want to see where he is. I don't want to push anything he's not ready for. Honestly, eating by mouth is not on the top of my list of Things I Want Christian To Do. But I'd like to get a look at where he is with mouth stuff so we know whether we should pursue food by mouth at this time or wait until he's ready.
Hyperbarics is going great! No crying...whoop! whoop! And I love seeing new things when we start up after a break. New things like moving arms, opening hands with a loose thumb, new sounds, new movements. All good stuff.
Oh, and I had mentioned before our trip that Christian wasn't feeling well. The day after I posted it was like nothing had ever happened. So Mama is happy I have a healthy boy.
Thanks for your continued thoughts and prayers! We love and appreciate every single one of them.
Unicorn frappuccino for my unicorn
1 day ago