Thursday, July 16, 2009
The UFO's Have Arrived!
Gavin's Ankle Foot Orthotics (AFO's), or as we like to call them UFO's, are here! We went in yesterday to have him fit for them and to take them home. He is very stiff in the ankles, so it's kind of a chore to put them on and he doesn't enjoy the process, but once they are on he is tolerating them.
On the other hand, he is NOT tolerating them on while in his stander!
Poor baby! I tried him out in it close to bedtime lastnight, so I'm hoping this is why he was so sad/mad about it! We'll try again today and hopefully he'll approve!
In other news, Gavin has been having possible seizures again. This started a few days ago. The movements are unlike the seizures he used to have, but it's a new thing that is worrisome. Before this started, he hadn't had seizures for about a year and a half. So, I'm a little worried and discouraged!
The seizures that he used to have would be rythmic in nature and he would extend his arms out and back in in a jerking motion. He would also deviate his eyes and appear to be somewhat "out of it." This would last about 3 minutes. Then he would sometimes cry after having them and seem sleepy or go to sleep after having one.
The movements that he is having now only last for 1-3 seconds and there is only one movement involved. He starts out looking somewhat surprised by something and then his arms extend outwards and become stiff. He sometimes makes a grunting noise while doing this. Afterwards he actually smiles and appears as if nothing has happened. And, he remains "with it" throughout and afterwards.
He does have spasms or clonus daily, and I don't know if this is another form of them or if he is indeed having seizures again. His neurologist wants him to have a repeat EEG since this is something new for Gavin. Gavin and I are NOT happy about having to do another EEG! He and I HATE going in for these! I have to try to keep him awake for half the night before the procedure and they have to put all these sticky probes all over his head and wrap his head up, then he's supposed to go to sleep while they are testing his brain waves. It is SO NOT fun and such a hastle! And, Gavin usually cries and doesn't cooperate with the falling asleep during the test part. UGH!
I pray that he is not having seizures again! I hated watching him have these! Plus, this would mean that his medication would have to be increased and this makes him more sedated. He is just now beginning to be more active and alert and I don't want to have him so groggy again on a daily basis! Please pray that these will turn out to be nothing big and that he won't have to be drugged up so much again!
"Trust in the Lord, and do good; dwell in the land, and feed on His faithfulness." Psalm 37:3