Unnnamed piece done for a friend who requested a purple and yellow fleur de lis.
Well, I called and scheduled an appointment with the neurologist. They couldn’t get me in until The second week in October, so I’ve got a little more time to get prepared. I’m waffling. I’m scared to death of the idea that Charlie could get hurt and it would be MY FAULT. It would be different if my husband and I shared in these decision more equally, but for the most part, he’s scared too and wants me to pull the trigger.
I have found what I consider another option: I’m considering asking the doctor if we can try Keppra. Doing a little research I found this web site: Crazymeds. It’s not written by doctors or anything, but that’s kind of why I like it. It’s written in language I can understand and you can tell that the author is pulling info from a number of sources–not just the write-up from the drug company. It’s still in the process of being created, so not every medication has a full write-up, but it you or your child is taking something that affects their brain then this might be worth a look-see.
Ok, enough about Crazymeds–Keppra! Keppra seems to have less of that sleep-inducing effect that you hear so much about with anti-epileptics. I’ve also had at least two parents on here leave positive comments about Keppra especially when compared to phenobarb. The only real issue as I see it is that Keppra is only approved as an adjunct for most seizure types (needs to be taken with something else). Of course, we don’t even know if Charlie is actually having seizures–he’s just high risk–so who knows what the doctor will say about that. There are also regional issues that you just can’t account for–different parts of the country tend to favor different types of drugs. I guess I’ll just have to wait and see what the doctor says. Patience is not one of my strong suits.
I’m also waffling on the Mother’s Day Out thing. I KNOW! I am so indecisive, right? Thing is, it’s not cheap. Also, it would take Charlie away from me for about five hours. I’m not sure if it would be a good thing–yay! I can get all my errands done! Or a bad thing–bah! that’s just more time where we’re not doing ABR or lessons. I am considering not doing MDO and instead getting Charlie into a monthly respite night. Basically, kids with mental or physical handicaps go to a church for three hours and sing songs, play games, and eat a meal. They are assigned a helper and everything. This would be good for several reasons: social interaction AND it wouldn’t interrupt the hours of the day when we normally have lessons/ABR. And I can’t deny the greatness of getting a Friday evening to myself once and a while.
I guess it would also be worth noting that Charlie social anxiety seems to be getting better. When we took him to the aquarium it was SLAMMED with kids and mommies and strollers and he did just fine. He just concentrated on the fish.
I guess I’ll also comment a little on his physical progress since I know there are people who want to know about this stuff. Charlie can now climb an eleven inch step on his belly. He is also actively trying to push himself into a sit. He hasn’t mastered it yet, but the intention is there and so is the movement–he just needs to get a little more comfortable shifting his weight onto his right arm. A final, smaller, but still important improvement is that he is starting to use a pincher-style grasp when he plays with his puzzles. We’re inching along over here, and it’s all good as far as I’m concerned.
I could go on and on with the updates, but I’ll give you a break now. I just wanted to add one final thing. Anat Baniel is a Feldenkrais practioner who broke off on her own and developed a whole practice working with children. She’s giving an all day web lecture online this Saturday. To go in person would be almost two hundred dollars. The web version will be fifty. Just something you could check out if you were interested.
I'm Katy. I'm a wife, mom, and champion napper. My oldest son is six and has cerebral palsy, I have two-year-old b/b twins, and a one-year-old. I consider myself living proof that God has a sense of humor. Read More…