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Heidi/Charlyne/Joan

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Hi, Everyone.....Heidi....it is good to hear that Tegan is doing better on

allergy meds but scary that an allergic reaction to mold could totally shut

him down. It will be a learning experience for all of us to remember.

Charlyne.....tell Zed to 'behave himself' at that prom!!! I remember

Gareth going to his first prom......gosh, that was 6 years ago!!! G enjoys

being in his suit and tie and having a 'nice meal' served!!!

Joan.....it was good to hear from you and get an Andy update. Gareth has

been finished with school since last July....he'll be 22 in May. He gets

12 hrs of HAB (respite) a week and works W and F at Skills.....gasp.....a

sheltered workshop. He doesn't want to go to work there and it's a real

struggle on those mornings. He wants to work on the PSU campus, but all the

'peon' jobs that use to go to the special needs kids have gone to the regular

students. Hopefully, when/if the economy gets better, he will eventually

be able to get a job there.

Medically, he seems stable now. He was dx'd with sine Scleroderma/UCTD 3

yrs ago and put on medication for that in which he responded favorably. He

was on seizure meds for 1 1/2 yrs only to find that he wasn't having

epileptic seizures but pseudo seizures and that's why the ESmeds messed his

brain

up so badly. We're currently playing with a possible AD dx, but I refuse

to accept that one.

As for bike riding......Gareth did really well on a tandem bike with his

Dad in front. He enjoyed *hitting the road* with Dad!!! That worked well

till he had his hip surgery and bike riding was a definite *no, no* after

that. One bad fall would could mess up those 5 pins in his hips. I suppose

we could invest in a tandem bike with large trainer wheels so it wouldn't

fall over. By the time we bought it, though, he'd developed SFS!!!

Take care, Everyone.

Margaret

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We switched Elie to the Green MAchine which worked for awhile. Lately we

have been looking at 4 wheel tandem or tridem cars (RHODES CAR is one

example.) They are bloody expensive and we live in HILL COUNTRY so that

would mean shlepping him and bike to flat surfaces.

is trying to get him to drive a gold cart but Elie gives him the

hand! He loves being chauffeured around

>

>

> Hi, Everyone.....Heidi....it is good to hear that Tegan is doing better on

> allergy meds but scary that an allergic reaction to mold could totally shut

>

> him down. It will be a learning experience for all of us to remember.

>

> Charlyne.....tell Zed to 'behave himself' at that prom!!! I remember

> Gareth going to his first prom......gosh, that was 6 years ago!!! G enjoys

> being in his suit and tie and having a 'nice meal' served!!!

>

> Joan.....it was good to hear from you and get an Andy update. Gareth has

> been finished with school since last July....he'll be 22 in May. He gets

> 12 hrs of HAB (respite) a week and works W and F at Skills.....gasp.....a

> sheltered workshop. He doesn't want to go to work there and it's a real

> struggle on those mornings. He wants to work on the PSU campus, but all the

>

> 'peon' jobs that use to go to the special needs kids have gone to the

> regular

> students. Hopefully, when/if the economy gets better, he will eventually

> be able to get a job there.

>

> Medically, he seems stable now. He was dx'd with sine Scleroderma/UCTD 3

> yrs ago and put on medication for that in which he responded favorably. He

> was on seizure meds for 1 1/2 yrs only to find that he wasn't having

> epileptic seizures but pseudo seizures and that's why the ESmeds messed his

> brain

> up so badly. We're currently playing with a possible AD dx, but I refuse

> to accept that one.

>

> As for bike riding......Gareth did really well on a tandem bike with his

> Dad in front. He enjoyed *hitting the road* with Dad!!! That worked well

> till he had his hip surgery and bike riding was a definite *no, no* after

> that. One bad fall would could mess up those 5 pins in his hips. I suppose

> we could invest in a tandem bike with large trainer wheels so it wouldn't

> fall over. By the time we bought it, though, he'd developed SFS!!!

>

> Take care, Everyone.

> Margaret

>

>

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