Re: Scared...

November 24, 2002

Hi ,

I am praying for you and Cassie right at this moment for a very peaceful, restful night and when she awakes in the morning for extra energy for the great adventure ahead. Take care and get to bed yourself.

With love,

Lynda R.

Re: Scared...>,>>You have been missed. I'm so glad you found the time>to post to us and let us know how you are all doing.>> I'm sorry to read that Cassie is not doing very well.> We all hope and pray that this will turn around soon.>>Hugs!>>Alice>>>Medical advice, information, opinions, data and statements contained hereinare not necessarily those of the list moderators. The author of this e mailis entirely responsible for its content. List members are reminded of theirresponsibility to evaluate the content of the postings and consult withtheir physicians regarding changes in their own treatment.>>

November 25, 2002

,

I'm sorry Cassie is not doing better. Nothing is " overboard " when your

looking for help.

I'm on all the list.There is no better place to learn,get advice,or just

have someone that listens then these groups.

, Mom to

To: < >

Sent: Sunday, November 24, 2002 7:18 PM

Subject: Re: Scared...

> Thanks Alice,

> I'm dropping in briefly on the site again, to say hi.

> Unfortunately, Cassie seems to be taking another turn for the worst today.

> Along with the weakness that is plaguing her lungs and heart, she is also

> having a great deal of difficulty just trying to sit up. She has a field

> trip for school tomorrow of which I have plans of going on. Just not sure

> if she is really up to it. She is on a modified schedule for school

> already. She goes in at 10:30 AM and goes home at 2:00 PM. And is also

on

> intermittent homebound. We know our days are soon to be limited in

> attending school because the illnesses at school will pick up in pace

after

> Thanksgiving. We've been hoping and praying to avoid the illnesses that

> have appeared in the school system. We've limited her boundaries of the

> school setting to just the homeroom and lunchroom, too help cut down

> exposure. Once the illnesses seem to be present in her classroom, she

will

> be pulled out of school to avoid them all together. She is extremely

> vulnerable now. So, with each day that she can attend school is a

blessing

> for her and me. She is really looking forward to the field trip, along

with

> the fact that she will be riding on a school bus which she does not do on

a

> regular basis. Another concern I have for tomorrow is that she will be

> getting up much earlier than she is use to, not sure if that will put her

in

> a deeper crash than what she is currently dealing with. I'm not sure what

> to do at this point. If she wasn't so excited about tomorrow, I would not

> go and without hesitation. We're trying to fulfill each wish we can at

this

> point.

>

> Thanks for being here to listen. I know that many on this site are adults

> and hope to keep it to the adult spectrum ( if that is the word to use

here)

> of mito. I hope I haven't gone overboard in mentioning the above.

> Wishing everyone the best

>

> Re: Scared...

>

> >,

> >

> >You have been missed. I'm so glad you found the time

> >to post to us and let us know how you are all doing.

> >

> > I'm sorry to read that Cassie is not doing very well.

> > We all hope and pray that this will turn around soon.

> >

> >Hugs!

> >

> >Alice

> >

> >Medical advice, information, opinions, data and statements contained

herein

> are not necessarily those of the list moderators. The author of this e

mail

> is entirely responsible for its content. List members are reminded of

their

> responsibility to evaluate the content of the postings and consult with

> their physicians regarding changes in their own treatment.

> >

November 25, 2002

Thanks Alice, Lynda and for the support.

We did have a bit of a rough night. Cassie kept waking up, saying she can't

sleep. She does deal with sleep insomnia, but I also think she was having

difficulty because of being so excited about the field trip the next day.

Cassie didn't need to be awake until about 6:15 AM, she was wide awake at

about 5 AM today. She usually doesn't wake up for school until about 8:15

AM, so I was a bit concerned that she was up so soon. We had a beautiful

day (sunny and 71 degrees) to enjoy on the field trip. The trip went

smoothly, she had no problems whatsoever during the trip. She was even able

to partake of some lunch (eating is very difficult for her, due to choking.)

So, she had a wonderful day. But, did go to bed much earlier tonight.

Thanks for the kind thoughts and prayers, they mean alot.