It has been about a month since I posted any sort of update on what's going on with Will to the blog, so here goes...
August has been a busy month full of tests, procedures, and doctors appointments. Will had an MRI of his entire spine under general anesthesia on August 11th. While he was under sedation, a lumbar puncture was done to test for neurotransmitter disorders. The actual procedures went well, and he came out of anesthesia fine. Unfortunately, Will had a lot of pain from the lumbar puncture. For the first 36 hours after the test, he wouldn't stand or walk. It was about 4 days after the test that he stopped crying all the time and not until a week after the lumbar puncture that he would lay flat on his back.
We saw the neurosurgeon on August 16th for results of the MRI. He said the syrinx (kind of like a cyst) on Will's spine had grown minimally and was still too small to operate on. He said it may or may not be the cause of what's going on with Will. If it is the cause, we have to wait for it to grow (and him get worse) before they can do anything about it. He wants to see us back in 6 months with another MRI to monitor the syrinx. We have appointments scheduled for February.
Will is currently in the hospital for a long-term video EEG. We were hoping to capture at least one of his seizures on it so we can better evaluate what's going on and give a more targeted medicine, but so far no luck. I guess it's a good thing that he's not having seizures, but it kind of defeats the purpose of the admission. We will go home tomorrow. I'm not sure what will happen if he doesn't have any on EEG. They may go on and add a second medicine, or they may wait and see if he starts to have more seizures again first.
We should get the results of the neurotransmitter test in another 2 weeks. We are also going to have blood drawn for mitochondrial disorders but haven't been able to get that done yet.
Will had his well child check on Thursday, and everything looked good. He hasn't gained much weight this year, but he's still at the 50%, so we're not too concerned. He is at the 75% for height. His doctor is helping us get him a new car seat and special needs stroller and filled out paper work for his new handicapped parking placard and Medicaid waiver application. It was a very successful trip.
We have ophthalmology and dental clinic visits in the next few months. Hopefully those will just be routine check ups. Thanks for all the prayers and support during this time. We love and appreciate each of you!
