This developmental stuff is much harder to deal with than the medical things. The medical things are relatively easy to talk about because they are concrete. And I KNOW I can't do anything on a daily basis, other than giving the appropriate medicines, to change them. The developmental things, however, are a different story. It feels like I should be able to fix these "delays." That if I somehow just work harder, and force him to work harder, that everything will get better. But I am his mother and not his therapist. I can follow through at home with the suggestions from his therapists, but I can't do it all day long, every day. Neither can he. He's a little kid, after all. So, this, like the fact that he has epilepsy, is something I can't fix. I grieve this. I grieve that he has to work so hard to master some things that just come naturally to other children. This is just as hard as dealing with his epilepsy in the first place.
And these tests will never test some of the things he excels at, like music. He has a spot-on sense of rhythm and pitch. He can make up his own fancy (and musically appropriate) endings to songs--the kid's got flair. When we get to the end of songs on familiar CDs, he not only knows what song is next, but can begin singing it, in the correct key, before it starts. His musical creativity and memory are something special--just a few of the many special things about him!
He's also a big-time trooper! He was hooked up to the itchy, uncomfortable EEG for 23 hours, and was incredibly patient most of the time, even though our mantra had to be, "Don't scratch your hat". We were so grateful (as I posted before) to have our own room in the Epilepsy Center at the new Lurie Children's Hospital in Chicago. When Micah did cry and scream a few times, all we had to think about was helping him to cope and calm down, rather than having the additional worry of bothering whomever our roommate was. And no one else's crying bothered us, either. Micah actually slept about 9 hours last night. David and I also got almost sufficient sleep, despite the typically uncomfortable hospital furniture (new, though it was). Not bad.
We haven't gotten the final results of the EEG, but we did learn that he appeared to have a few of the electrographic/sub-clinical (ones we can't see happening) seizures again. Big-time bummer! Our epileptologist is not alarmed by this, though, saying that it is consistent with the active malformation Micah has. We are increasing one of his meds to try and stop them. The EEG is also still pointing toward the possibility of surgery, but we have to wait for the MEG test before getting final approval.
All in all these were a good few days, considering that they were filled with medical appointments for a three-year-old.
And these tests will never test some of the things he excels at, like music. He has a spot-on sense of rhythm and pitch. He can make up his own fancy (and musically appropriate) endings to songs--the kid's got flair. When we get to the end of songs on familiar CDs, he not only knows what song is next, but can begin singing it, in the correct key, before it starts. His musical creativity and memory are something special--just a few of the many special things about him!
He's also a big-time trooper! He was hooked up to the itchy, uncomfortable EEG for 23 hours, and was incredibly patient most of the time, even though our mantra had to be, "Don't scratch your hat". We were so grateful (as I posted before) to have our own room in the Epilepsy Center at the new Lurie Children's Hospital in Chicago. When Micah did cry and scream a few times, all we had to think about was helping him to cope and calm down, rather than having the additional worry of bothering whomever our roommate was. And no one else's crying bothered us, either. Micah actually slept about 9 hours last night. David and I also got almost sufficient sleep, despite the typically uncomfortable hospital furniture (new, though it was). Not bad.
We haven't gotten the final results of the EEG, but we did learn that he appeared to have a few of the electrographic/sub-clinical (ones we can't see happening) seizures again. Big-time bummer! Our epileptologist is not alarmed by this, though, saying that it is consistent with the active malformation Micah has. We are increasing one of his meds to try and stop them. The EEG is also still pointing toward the possibility of surgery, but we have to wait for the MEG test before getting final approval.
All in all these were a good few days, considering that they were filled with medical appointments for a three-year-old.
No comments:
Post a Comment