Re: hailee sick again, feeling frustrated

April 17, 2004

,

I am so sorry to hear Hailee is not doing well. I know we can't be there in person with you, but we are there in spirit. I am praying that by morning Hailee will be doing better and that you can get some much needed rest tonight while the nurse is there.

Kathy, grandma to Audrey, 32 mos

April 17, 2004

,

I am so sorry to hear Hailee is not doing well. I know we can't be there in person with you, but we are there in spirit. I am praying that by morning Hailee will be doing better and that you can get some much needed rest tonight while the nurse is there.

Kathy, grandma to Audrey, 32 mos

April 17, 2004

,

I am so sorry to hear Hailee is not doing well. I know we can't be there in person with you, but we are there in spirit. I am praying that by morning Hailee will be doing better and that you can get some much needed rest tonight while the nurse is there.

Kathy, grandma to Audrey, 32 mos

April 17, 2004

,

I am so sorry that Hailee is sick again. It does feel lonely to

sit and worry all by yourself, but you are not alone. If her speech

is slurred today, I would call the doc. At least get her checked out

in the ER. Maybe it will put your mind at ease. I hope you were able

to get some sleep. My thoughts are with you and hailee!

Dawn

April 18, 2004

Don't you just hate the up and down-ness of Mito?! Keep an eye on her and take notes or photos of what you see for the next doc appointment. The photos help the doctors to see the issues if by the time they go to the doc the symptoms have resolved. (Neurologists in particular need proof sometimes.) If she has problems that concern you definitely take her in but unless there is a metabolic imbalance that they can correct with meds, no medication can stop the progression of a stroke episode. This is why we call the docs about the strokes but don't usually go to the hospital for them any more. I think the only time I would go in now ifs if one of the girls was VERY affected or had breathing problems. Sorry it's been a rough week. Take care. Darla hailee sick again, feeling frustrated Ok, we have only been home 12 hours and hailee is once again sick and throwing everything up, i am begining to feel so very frustrated. Thankfully we have nursing tonight so i can try to get some sleep, i am just worried about her, her nurse said she was having slurred speach and was hard to understand. I worry about her having a stroke, she has allready had one mini stroke, so tonight i just sit and cry and feel so very alone, i really hate being a single mom_________________________________________________________________Is your PC infected? Get a FREE online computer virus scan from McAfee® Security. http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963

April 18, 2004

Don't you just hate the up and down-ness of Mito?! Keep an eye on her and take notes or photos of what you see for the next doc appointment. The photos help the doctors to see the issues if by the time they go to the doc the symptoms have resolved. (Neurologists in particular need proof sometimes.) If she has problems that concern you definitely take her in but unless there is a metabolic imbalance that they can correct with meds, no medication can stop the progression of a stroke episode. This is why we call the docs about the strokes but don't usually go to the hospital for them any more. I think the only time I would go in now ifs if one of the girls was VERY affected or had breathing problems. Sorry it's been a rough week. Take care. Darla hailee sick again, feeling frustrated Ok, we have only been home 12 hours and hailee is once again sick and throwing everything up, i am begining to feel so very frustrated. Thankfully we have nursing tonight so i can try to get some sleep, i am just worried about her, her nurse said she was having slurred speach and was hard to understand. I worry about her having a stroke, she has allready had one mini stroke, so tonight i just sit and cry and feel so very alone, i really hate being a single mom_________________________________________________________________Is your PC infected? Get a FREE online computer virus scan from McAfee® Security. http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963

April 18, 2004

Don't you just hate the up and down-ness of Mito?! Keep an eye on her and take notes or photos of what you see for the next doc appointment. The photos help the doctors to see the issues if by the time they go to the doc the symptoms have resolved. (Neurologists in particular need proof sometimes.) If she has problems that concern you definitely take her in but unless there is a metabolic imbalance that they can correct with meds, no medication can stop the progression of a stroke episode. This is why we call the docs about the strokes but don't usually go to the hospital for them any more. I think the only time I would go in now ifs if one of the girls was VERY affected or had breathing problems. Sorry it's been a rough week. Take care. Darla hailee sick again, feeling frustrated Ok, we have only been home 12 hours and hailee is once again sick and throwing everything up, i am begining to feel so very frustrated. Thankfully we have nursing tonight so i can try to get some sleep, i am just worried about her, her nurse said she was having slurred speach and was hard to understand. I worry about her having a stroke, she has allready had one mini stroke, so tonight i just sit and cry and feel so very alone, i really hate being a single mom_________________________________________________________________Is your PC infected? Get a FREE online computer virus scan from McAfee® Security. http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963

April 19, 2004

Instead of photos if you can videotape that is even better yet.

We had one neuro (who we aren't seeing anymore) didn't believe us in the

very beginning when we said Leah is not regaining skills something is wrong.

So he had us videotape her (this was after a week of phone calls) and he

immediately could see something wasn't right and wanted to see us.

We also took pictures to prove her head control was off, too. But

if you can videotape at least that shows more detailed than a picture.

Nerenhausen

mom to Leah

P.S. We didn't have a video camera, so we rented one just to prove

our point to the doctor.

Darla Klein wrote:

Don't you just hate

the up and down-ness of Mito?! Keep an eye on her and take notes

or photos of what you see for the next doc appointment. The photos

help the doctors to see the issues if by the time they go to the doc the

symptoms have resolved. (Neurologists in particular need proof sometimes.)

If she has problems that concern you definitely take her in but unless

there is a metabolic imbalance that they can correct with meds, no medication

can stop the progression of a stroke episode. This is why we call

the docs about the strokes but don't usually go to the hospital for them

any more. I think the only time I would go in now ifs if one of the

girls was VERY affected or had breathing problems. Sorry it's been

a rough week. Take care. Darla

hailee sick again,

feeling frustrated

Ok, we have only been home 12 hours and hailee is once again sick

and

throwing everything up, i am begining to feel so very frustrated.

Thankfully we have nursing tonight so i can try to get some sleep,

i am just

worried about her, her nurse said she was having slurred speach and

was hard

to understand. I worry about her having a stroke, she has

allready had one

mini stroke, so tonight i just sit and cry and feel so very alone,

i really

hate being a single mom

_________________________________________________________________

Is your PC infected? Get a FREE online computer virus scan from McAfee®

Security. http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963

April 19, 2004