You know what I love?
I love those moments when something that I've been struggling with; a problem or an idea that isn't quite right, and then suddenly, usually when I am thinking about something totally different days later, the right answer will plop into my brain like a cheerfully bouncing Jell-O. Or maybe it's like that phenomenon when you find those lost keys only after you have turned the whole house upside down, accused everyone around you, and had new ones made.
So in the middle of all this seizure trauma with Leo, when our minds have been far from it, Leo has learned to sit up and say "mama." Forget the keys, this is more like finding your wallet that you lost years ago and seeing that the driver's license pic of you at 17 wasn't as bad as you thought, and that the hundred dollar bill in there is in pristine condition.
Even though all his therapists encouraged us into thinking that there is no reason why he won't reach those milestones, it's always safer not to put all your hopes in one basket. I learned early on with Leo not to make any assumptions. But he is determined to catch up. He is learning not in days, but in hours things that usually take months. Maybe all that extra brain activity sparked those siezures!
Just a quick update on the seizures: it seems like all the labs except one have all come back normal, and all images show that his shunt is 100%. That one lab that is still in process is the one that is checking him for carbohydrate deficiency. At this point we still haven't been able to sit down with the actual neurologist to discuss Leo's seizures, or what happens if he is found to be carbohydrate deficient and how that can effect his seizures. There is a chance he might have to go on that ketogenic diet where instead of using glucose in his brain, ketones are used. At this point in time all I know about this I got from the world wide web, but it does seem like it is a good option for seizure control. So far, there have been no more episodes of seizures, and we hope, hope, hope that the bigger dose of Keppra is doing its keep away seizure magic! We meet with those docs in a couple weeks. Lets hope we can stay out of the ER until then...
Here are some brag pictures of Leo finding that sweet spot of balance and harmony in his body! And he is also taking those first crawling attempts....
I love those moments when something that I've been struggling with; a problem or an idea that isn't quite right, and then suddenly, usually when I am thinking about something totally different days later, the right answer will plop into my brain like a cheerfully bouncing Jell-O. Or maybe it's like that phenomenon when you find those lost keys only after you have turned the whole house upside down, accused everyone around you, and had new ones made.
So in the middle of all this seizure trauma with Leo, when our minds have been far from it, Leo has learned to sit up and say "mama." Forget the keys, this is more like finding your wallet that you lost years ago and seeing that the driver's license pic of you at 17 wasn't as bad as you thought, and that the hundred dollar bill in there is in pristine condition.
Even though all his therapists encouraged us into thinking that there is no reason why he won't reach those milestones, it's always safer not to put all your hopes in one basket. I learned early on with Leo not to make any assumptions. But he is determined to catch up. He is learning not in days, but in hours things that usually take months. Maybe all that extra brain activity sparked those siezures!
Just a quick update on the seizures: it seems like all the labs except one have all come back normal, and all images show that his shunt is 100%. That one lab that is still in process is the one that is checking him for carbohydrate deficiency. At this point we still haven't been able to sit down with the actual neurologist to discuss Leo's seizures, or what happens if he is found to be carbohydrate deficient and how that can effect his seizures. There is a chance he might have to go on that ketogenic diet where instead of using glucose in his brain, ketones are used. At this point in time all I know about this I got from the world wide web, but it does seem like it is a good option for seizure control. So far, there have been no more episodes of seizures, and we hope, hope, hope that the bigger dose of Keppra is doing its keep away seizure magic! We meet with those docs in a couple weeks. Lets hope we can stay out of the ER until then...
Here are some brag pictures of Leo finding that sweet spot of balance and harmony in his body! And he is also taking those first crawling attempts....
Way to go, Leo!!!!!
ReplyDeleteNice pic to end with! Sitting AND Mama! Nice going, Leo :-) Can't wait to see you :-)
ReplyDeleteHe is fabulous. :)
ReplyDeleteYou know what I love? In spite of everything he's been through, Leo seems so content and happy....even peaceful. I'm sure he has his "moments" like we all do, but whether he's in the hospital or at home, there is something very angelic about him.
ReplyDeleteWith love & continuing prayers for his ongoing, wonderful progress,
Kathy