This month has been full of doctor appointments as well. We saw the physiatrist and she gave me the choice of putting cast on Dakota again or going right to botox to help with his muscle tightness in his legs/ankles. I chose to give casting a try again and if it doesn't make a huge difference then we will try the botox. He had his follow up with Dr. Murray for his tonsil surgery and botox. He recovered from the surgery just fine; We knew he would. we will continue with the botox every 3 months as we have seen a difference in his secretions. He had a 24 hour EEG done at home. We should have results from that this week.
Monday we went down to Boston Children's for Dakota's Ketogenic routine follow up. The doctor was pretty close to being on time which never happens. While the nurse was getting his measurements and weight she had asked me how his seizures have been. I told her she was not going to like the numbers but to keep in mind that more then half of them are small ones that don't bother Dakota. I gave her June(141) and July's(196) numbers and then started to count the total so far for August. When i got to 200 i took a deep breath and continued to count, the final count was 237 and we weren't even done with the day! It killed me to hear that number come out of my mouth. I have to remember that Dakota's quality of life is more important then any numbers. That we have our son and he is thriving off all those nasty drugs. That most of his seizures are small and don't effect him as much as the drugs would. He's able to come out of them on his own and go back to playing. Thankfully his doctors agree with us. We did talk about maybe increasing the only seizure med he is on(onfi) or adding a new one but that we could stop it if we thought it was holding Dakota back. The doctor was happy to see how alert Dakota was, so besides the seizure count he had a pretty good appointment. After this we headed down to get his cast off! He had them on again for 10 days and did great. He hates the sound and feeling when they saw them off so he was upset for a little while. Plus I'm sure it feels weird. We finished our visit off with some blood work and then headed home.
Today he got some new night braces called ultra flex. He doesn't seem to mind them. We are trying them out tonight and has done ok so far. He also had his eye check up. He goes every 6 months now which means he's not getting worse. The doctor said his alignment seems to be better which we have noticed and his tear ducts seem to be open still. His optic nerve looks good but he is still near sighted. He did say that glasses may be in his future but not yet.
Friday he sees the geneticist for his yearly routine follow up. We do have some questions for her and can't wait to get them answered. That has been our month like I said very busy. I've also been planning our first Golf scramble to help raise money for the wheelchair van. We are still taking registrations and sponsors/donations. If you are interested please let us know. All are tax deductible.