Today Megan has had three sets of seizures. We were scheduled to see Dr. J today at 2 pm already. I asked him why this is happening and he said that he has no answer, this is how these seizures are. He wants to increase the dose of the ACTH starting tomorrow and see in one week what happens. He sees such improvement in her cognitive awareness that he does not want to let these seizures win. I can see that it has become different for him treating her since he has seen that she is inside there. That is the hardest thing to get accross to the doctors I think because they dont see what we see. How can they in their short visit. Meg is also never the same at a doctors office than she is at home. The chance they will get a look at a good moment is rare. I think he sees promise in her now. I know that cant change the incurable, but it can help with lots of other approaches. Everyone is asleep here and I should be too but the tension knots in my shoulders are so painful and keeping me awake.
I am also really debating how to go forward with future therapy. How much is too much? Am I trying to make her body do things it cant to reach the dreams that we envision for her? If she could tell me I am sure I would know these answers. I dont want to overdo it or underdo it. I have to find the balance here. Running all over the place all the time has not done very much to help her it seems since the seizures can undo it so quick. I will pray for guidance from up above to lead us in the right direction.
Have been thinking about this exerciser I saw at the World Disabilities Conference called the Quadrisizer (sp??) - it could do a lot at home and eliminate all of the running around and appointments and allow us to be in charge of each day again. I so miss that! The price tag is not cheap though. My friend Kristi in TN who has an 8 year old Mito daughter, Mayci is going to see it tomorrow I think since the company is about 4 hours from her in TN. The developer is a great guy. He built it for a family member initially. Kristi and I went to the conference together and I dragged her to the expo booth and told her I want one of these for Megan. She was impressed too. We met in Wisconsin over the summer and were instant friends. Aside from Megan and Mayci we seem to have a lot in common even though we are from different worlds - girl from Long Island originally and a girl from rural Tennessee. Who would think, right? Mayci also has had mycolonic seizures and is on several meds and is doing well right now. The HBOT has almost completely done away with the seizures for Mayci. She really benefited from it, but has had about 90 treaments in the heavy duty chamber. Write more later - going to try to sleep while Megan does.