A whole 1 1/2 weeks without a dr appt for any of the boys!
This may sound outrageous that such a thing would feel like an accomplishment. But when you've got 3 boys that all see multiple specialists and are young enough to still have testing going on, it's actually not that outrageous... just really exhausting.
We also finally picked out colors for something we should have a long time ago, but couldn't find what I wanted at all. Then suddenly it was there and we could move on!
Poor Aidan has been vomiting a lot again. Not like it was before any help at all, but still dangerous enough it wouldn't take much to put him in the ER. Not where we want to be!
I'd really like to say we didn't have another ER visit before the end of the year too...
Two and a half days left to go. :)
Damon is doing great! He's getting big (for our boys- still tiny compared to peers) and is so fun to be around. His 'tude still shows when he's wanted to be treated like a big kid, but not nearly the extreme it used to be. Praying this continues, because after knowing how the other half lives, I'm really not wanting to go back to the dark side. ;)
Jace is doing really good. He's still having balance issues, that seem to be associated with seizure activity, that seems to be associated with poor sleep... same old cycle, just gets enough of a break from it now we can actually see it.
We have officially crossed the line to handicapped status, with a parking permit. That's weird- I never thought in a million years I'd be using one for my son.
Really not sure what to think about Aidan's med change yet. I see improvement in his ability to communicate, which is always a good indicator seizures are reducing. But all this puking is confusing... is it the meds making it worse, or specific seizures not being helped by the meds, or just the GERD getting worse? At the same time, I can see as we work on school and have conversations, that he still is not maturing with understanding of very basic things... like the concept of make believe vs reality. To see him not progress is so frustrating and so confusing. I have very little answers as to what to expect with his abilities. Or his brothers for that matter.
I've enjoyed baking bread whenever I can and wish my body would cooperate to do more like it.
A part on my sewing machine broke, rendering it useless... or I'd be finishing up some sewing projects.
Hm. Good thing I'm not a sewing lover or I'd be pretty upset right now.
I'll post some pics soon!
Poor Aidan has been vomiting a lot again. Not like it was before any help at all, but still dangerous enough it wouldn't take much to put him in the ER. Not where we want to be!
I'd really like to say we didn't have another ER visit before the end of the year too...
Two and a half days left to go. :)
Damon is doing great! He's getting big (for our boys- still tiny compared to peers) and is so fun to be around. His 'tude still shows when he's wanted to be treated like a big kid, but not nearly the extreme it used to be. Praying this continues, because after knowing how the other half lives, I'm really not wanting to go back to the dark side. ;)
Jace is doing really good. He's still having balance issues, that seem to be associated with seizure activity, that seems to be associated with poor sleep... same old cycle, just gets enough of a break from it now we can actually see it.
We have officially crossed the line to handicapped status, with a parking permit. That's weird- I never thought in a million years I'd be using one for my son.
Really not sure what to think about Aidan's med change yet. I see improvement in his ability to communicate, which is always a good indicator seizures are reducing. But all this puking is confusing... is it the meds making it worse, or specific seizures not being helped by the meds, or just the GERD getting worse? At the same time, I can see as we work on school and have conversations, that he still is not maturing with understanding of very basic things... like the concept of make believe vs reality. To see him not progress is so frustrating and so confusing. I have very little answers as to what to expect with his abilities. Or his brothers for that matter.
I've enjoyed baking bread whenever I can and wish my body would cooperate to do more like it.
A part on my sewing machine broke, rendering it useless... or I'd be finishing up some sewing projects.
Hm. Good thing I'm not a sewing lover or I'd be pretty upset right now.
I'll post some pics soon!
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