* This update was sent out earlier in the summer via msg of fb. While the info is a bit dated (July) I felt it still needed to be shared :)
Evan had several doctors appointments last week. Ocularist (his left eye) Craniofacial team (for the shape of his head) an EEG (to check for seizure activity) and neurology (they study the brain and how it is functioning)
At the ocularist, he got a new spacer in his eye that has really opened his eye up even more. We will go back in 6 weeks for the next increase.
The craniofacial team is monitoring the shape of his skull. We are hoping with his recent shunt setting change, that the ridges on the top of his head level out. We had to discontinue the helmet therapy for a few reasons, all too lengthy to explain. Evans brain growth is our number one concern, and we can’t have anything that may constrict the skulls ability to grow where it needs to. We go back Sept 11th to see how things have progressed. Please pray that they level out on their own
We also saw our neurologist, and then Evan had an EEG done. The EEG showed no signs of seizures which is a really REALLY good thing. But it did show that in one part of his brain, the waves were slower. This is called static Encephalopathy. There are MANY many kinds of encephalogy. Some deal with the brain, others with kidneys and liver. Some are degenerative (in that they get worse) Evans are “static” which means stable. It will never get any worse. Most are caused by some type of brain injury and can happen at any age. Obviously Hydro is a traumatic brain injury. Because of the fluid, his brain was damaged. We already knew this, but in some kids, when the fluid drains and the brain fluffs back out (which Evan’s has) the waves are at a normal rate. For some kids, there is lasting damage, hence the encephalopathy. The good news is this, the encephalopathy has always been there. This isn’t new. Evan has been making fantastic progress WITH this area of his brain damaged. For some kiddos, the damage is in many parts of their brains. When you look at what parts of your brain are responsible for what, I find it comforting to know it is in one single location. Kids with hydro are at a much higher rate for seizures, and the encephalopathy only increases that risk even more. We will be seen at glennon every 4 months by the neuro team to monitor this. Our neurologist was very impressed with how well Evan was doing at the appointment and made several comments about his ability levels. (they did a little “developmental screening” before the EEG. She made note of how well he was babbling, and said the slower waves were in the “back” of his brain, which I am assuming means it is in the area of the brain that controls speech. She said to continue making him our focus and that what we are doing is working. He is obviously very stimulated and has been receiving several forms of therapy (weekly hearing, vision and physical therapy in our home) and monthly audiology at moog. She said to continue those, with the addition of speech in the coming months. She said that when looking at CT scans and MRI’s, she has seen many children that by all accounts from the images, should be low functioning, yet their brains have re-wired and they are “typically developing” children. We already know that Evan is the best Evan he can be!
I didn’t mean to write this lengthy of an explanation, but I wanted everyone to know what was going on. Sometimes when the story is re-told words get left out, missprounced, ect and people are left with a much more dire view of the situation. I also think (know ) the internet is FULL of crap-tastic information. For a reputable source of this, I’ve added a link. Not that I expect you all to read it, but if you are going to google it, at least read information that is correct Plus, this one is extremely positive.