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Finally! Some good news about my daughter.

For those following, there is not much to add. She is doing ok, and we tried to wean her of the seizure meds. She must have been close to having them, as we forgot her meds on Easter and she had some small ones. She is now back on her full dose.
We have been swimming in the pool, and she seems to like it, she squeals and kicks a lot.
She also got her braces off last week, was fitted for a retainer that fell out instantly, so she got a new one this week Tuesday. She had eaten early last night, and I had got home late, so my wife and I were eating supper in the kitchen in full view of her.
We heard choking sounds, and my wife went from 0 to holy **** in seconds and was in there removing the retainer she was choking on.
Whoever thought straight teeth would be a life or death issue?


We have dismissed the caregiver, she was adding more work to our lives, rather than removing it. We are interviewing with a new agency right now.

So, we keep getting our reality checks, and don't have any time to cash them together. I have Hiawatha Rally this weekend, and my wife is going to Wendover with the girls next weekend. Sometimes, I would like a simpler life.
 
Roy, know that many others are thinking of you and your wife and your daughter - often. You have one hard row to hoe. And it would be very tiring to have to be on 100% alert at all times. Does your daughter have a dog that senses oncoming seizures? My neighbor's daughter has one, and it seems to heop alot. My neighbor is raising her daugher (now about 18) by herself; she is one brave woman. Bless you all,
Muriel
 
Roy, know that many others are thinking of you and your wife and your daughter - often. You have one hard row to hoe. And it would be very tiring to have to be on 100% alert at all times. Does your daughter have a dog that senses oncoming seizures? My neighbor's daughter has one, and it seems to heop alot. My neighbor is raising her daugher (now about 18) by herself; she is one brave woman. Bless you all,
Muriel

I could not log in last night, Thank you Muriel.
The seizures stopped once we moved her meds back, so it appears we can't wean her off them yet. I am hoping we can do something else with her retainer, there is no way I will allow them anything loose in her mouth overnight. It may mean more work for us but anything worth doing is worth doing right, IMO.
:wave
 
Hmmm. I swear I started another thread about this, as I couldn't find this one, yet here it is.

Lessee, Rachael is 15, and being weaned off her original seizure meds from several years ago. They ramped up the dose to 1250 mg after they started up again. She is now down to 250 mg, and fully on the new meds, which do not damage liver (or kidneys, I forget which). She never made much progress on the tricycle, but we had tried a new device at the Hospital in their rehab dept, before buying one. It's like a stationary bike with one wheel, made to haev a wheelchair roll right up. There is a computer and a motor that asisists if they can't, to keep up the rotary motion. They attach e-stim elctrodes and fire her muscles to work the pedals. Some very complicated and cool stuff. They were so impressed with her display in it that they submitted the paperwork to Insurance, who promptly denied it as "experimental." I have 180 days to appeal, and I am going to try and send them this video, so they understand it's something she hasn't done for 10 years, and can only improve her general health.

<iframe width="560" height="315" src="//www.youtube.com/embed/LqNqknjFqgE" frameborder="0" allowfullscreen></iframe>

Truth be told, if they still deny it, we were going to buy it anyway. We feel fairly strongly about this one.
We have been swimming with her all summer, and she is strong but still not really walking and helping as much as she used to before the Scoliosis surgery. This device will help us in the winter, and she can watch TV while building up cardio (more than she does now) and evenly building up leg muscles. She just had to go today for more botox in her left leg, the inside muscles are too strong and pull her whole leg inward, which makes it really hard to walk. She cried. I would like to stop that too.

So there it is, I am still riding and I get to ride to work now. It's only 10 miles but :clap
I will see some of you at the Dells Rally, and miss the rest of you.
:wave
 
Glad to hear some good news Roy, see you at the Dells! I suspect you'll get that bike for Rachael too somehow or another.

Sent magically!
 
So, the RST 300 Therapy bike is at our house, and will be assembled and we will be trained by Lisa next Wednesday.:clap
I am trying not to get too worked up about this, but I really hope Rachael responds to this. I am not sure if we can get her walking again if this does not do what we hope it will do.
 
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