July 2nd - Andrew update

Sorry it's been a little bit since I've updated. I've got to be honest, I've been very discouraged this week. While the number of Andrews seizures had decreased the type of seizures has worsened. The result is that Dr. Matthews increased Andrew's Clonazepam to 3x daily. The effects haven't been so bad this time. He was pretty whiney yesterday and this morning, but seems better now. At least he smiles when I talk to him.

And dare I say anything? I have not even seen one seizure today. Yesterday he had 8. Can the Clonazepam work so quickly? I still have this deep fear in my gut that he'll have that really big one which will take us to the ER. But I should also learn to "not borrow trouble" that isn't there.

I really do hate seizures. I sometimes (actually more than that) wonder if the medication is worth it? Are the seizures that bad or concerning? Because honestly, the medication is bad.

Another side effect of the Clonazepam is that Andrew's airway has become more "floppy". Basically he constantly sounds like he's snoring, that and he's having a very difficult time handling his secretions. I spoke with Dr. Bishop's office (GI) and they aren't that concerned about the airway because it's just noise. They did say that if he continues to have difficulty with his secretions that we may need to start suctioning (yuck). They have also said that they will order a swallow study anytime I want. Which is a relief because I've been a wreck all week thinking that this whole thing will effect Andrew's ability to eat orally. His oral skills have diminished so much. He's about 80% tube fed now which is a huge change from this time last year. I would maybe tube feed him once a week or so, but not very often at all. So I'm going to make sure he gets his Robinul to control the secretions 3x a day and then make sure he's very well hydrated. I've always kind of "skimped" on the Robinul because the side effects concern me, especially in the summer. The medication dries up his secretions so I worry that he'll become dehydrated.

Anyway, I do have some family stuff I would like to update. Loren, Aaron and I went to the Mississippi River Museum yesterday and I have pictures from that. So hopefully I'll get motivated and do that before I have a bunch of stuff from July 4th.