Monday, October 13, 2014
Gborlee has been struggling with more seizures lately and just last Friday had to have emergency diastat at school and sent home to sleep it off. The good part of the diastat is that our school is very well Intune to seeing the seizures and knowing when to administer the drug, but also it stops the seizures within 2-3 minutes every time. The seizures seem to be frustrating to him and I believe he gets a bad headache just prior to the beginning of a string of seizures. The kids have called them "glitches" for a while now, and that really does describe how they seem. No matter what he is doing, he collapses and draws into a near fetal position and within seconds can right his body again just before the next one hits. When one of us is around, he gets held and we rub his head and back to help break the cycle. I don't know that there is any scientific founding in that, but it makes us feel like we are doing something to help, even though we actually are quite helpless. Gborlee is so good natured. He laughs heartily when he is happy, and even gets some physical humor. He doesn't really watch tv, but he will react to certain words he hears or Songs that play. When someone sneezes in the house, you can bet Gborlee with issue a hearty "ah-choooo!" In response. When he burps, he almost always says "'scuse you!" It's hard to believe he will be turning 7 in November, and even harder to believe just how very far he has come in the last 2 1/2 years of American life. He is also is a kisser. In the mornings, at lunchtime, before bed, and many times a day in between! He especially loves baby brother, Isaiah, and kisses him as often as he can. He is so loving and innocent. I think that's part of what makes him such a sweet boy. He does get upset if he gets stuck (like trying to pull his shirt off, or behind a chair that he can't maneuver away from) and starts whining. We have been signing to him and saying "help, please" and he is learning a few variations of those signs. Like yesterday, he kept signing "more" and "thank you" together, and what he really wanted was someone to help him get the toy out from under the table (so he could play "more" with it!) He probably should be encouraged to quit sucking his thumb, but with awful vision and only one ear that hears, I feel like if that thumb gives him comfort, how can I insist he's got to find another way? I remember taking him to stores in Liberia where the older women would say "he will never get married with that thumb in his mouth!" And they would even pull it from his lips. Well, Boo Boo, it's okay with mommy for you to get comfort from that thumb for now! And frankly, at just near 7, I am not really sure we should be all that worried about whether he marries some day. For me, it's just right, just the way he is. Growing, learning and being HIM! As we look into the possibilities of a surgical prevention for his numerous seizures, I am reminded just how important it is to be the voice that he does not have. He knows I will advocate for all he needs, no matter what it is, for as long as I am able. And knowing Gborlee, I will get one of his sweet, noisy kisses as payment. And that, too, is perfectly fine with me.