The Little Things

Today I wandered down the hall at school, into the other wing and through the the 2nd grade pod (Bean's pod) toward Bubba's classroom. My "reason" to stop was to double-check that he would go to aftercare after school today. The real reason -  I was able to get a big squeeze in the middle of my day. He has that way of making you smile no matter what. He has always known so much more than anyone gives him credit for and he is sensitive to what people are thinking and feeling. I am so blessed to have him in my building where I can get to him in less than 2 minutes if needed (ok, maybe faster ya'll have seen how I walk!), but also trust him to be happy at school where he wants and needs to be.

 So "How is Ayden?" -  Ayden is at school and I am back at work, when it is in session. 

Nessa Bean and Bubba 

 Ayden is still seizing daily and they are becoming more pronounced. Enough that Nessa actually celebrated, "I can see the seizures now too!" When I was choosing to ignore it at the table the other day Nessa spotted it with excitement. That has taken a bit to get used to, but what a blessing to have another set of good eyes on Bub. She wants so badly to understand all this sometimes and she is truly excited to feel like she finally sees what we are talking about.

Cleveland advised to change nothing, do nothing, and just call them in a few weeks. As you can imagine doing nothing was not on my agenda last week when we spoke to them. After that call last Tuesday, I set up an appt. with our local Neurologist on Friday. She was the first neurologist that started solving Ayden's epilepsy mystery in 2009 after one very bad misdiagnosis. She is our local neurologist and has been right on each time in her opinion of what will or should happen. We didn't start with her this time because we originally went to Cleveland to meet with our neurosurgeon, not our neurologist. We had just visited in September, I say visited because when he is healthy and doing so well that is all we really do. She was so excited to see him growing and learning and we even talked about taking him off his final medicine this spring. Needless to say she understood our concern and in her words "He has made too many gains to risk regression due to the frequency of the seizures". She said she would talk to Cleveland and was sure our team there would have no problems with her addition.

 He has almost completed a week of the companion medicine and it will take another 3-4 weeks for it to be at the right level. Do we see any improvements, no, but we would not expect to see any until the dose is where it will be long-term. The positive is we have yet to see any significant side effects with this one and usually EVERY med has some side effect with Bub, so that is good. Now, it is back to waiting and hoping that maybe trying this will help. Maybe we found the magic medicine that will work and we won't have to worry anymore. Right now, we will choose to focus on the little things...Sis's celebration of her new found skill, Bub filling a bathtub full of balls while I am doing the laundry, or a little voice hollering "Close it!" - meaning mom I am ready for bed(closing his safety bed) then walking in to the picture below...lol! 

After his bath tonight he stocked up for bedtime

As long as he is sneaky, sweet, and smiling then I guess we all should be happy too. It is the little things that we can enjoy right now while we pray the big things will go away. :)