update

[Guest guest]

-Dear nan, You all are in my thought and prayers at this stressful

time. let's hope can get the infections under control. Celia

-- In , " Nan " <msnanlk@a...> wrote:

> Just a quick note to update you on 's current situation.

>

> She remains hospitalized and is currently considered in critical

> condition. Her weight is down to 63 lbs. All of her lines have been

> pulled due to infections and she is receiving limited feeding until

> she is infection free for 3 full days. In the meantime she has

little

> energy and drifts in and out of sleep/consciousness. All of our

> contact with her (unless we are physically present) is through the

> nursing staff because she no longer seems to answer the phone.

>

> Please pray for her.

>

> Nan in Illinois

[Guest guest]

Hey guys,

Been trying to keep up with the posts/emails and have been reading most of them, so yall better know that each one of you is in my thoughts daily. I am having a tough time lately. I had a bad SLE that went on for 2 days and I am still having issues from it. My speech is really messing up on and off where I have probs with my tongue getting tied and getting words out and my vocal cords seem very weak. more confusion spells. I've been sleeping 16+ hrs it seems every other day and then getting very little sleep the next. My pain level is crazy even with dilaudid. I'm feeling weaker and weaker each day, I am able to do less and less. I get out of breath quicker these past few days and my tremors are much more pronounced. I'm having seizures almost every day it seems. And the past 3 days I've only been able to eat one small meal a day or an ensure because of swallowing issues and severe nausea and fullness feeling. I'm getting scared to tell you the truth. I know I'm crashing because of an infection I got going on in my respiratory tract. I saw my local neuro Monday and she was no help at all! She doesnt care that my seizures are more frequent or about any of the other stuff. She said I do need a muscle biopsy but didnt do anything to get that done. She mad suggestions of alot of things but did nothing about them. She said just see her in a few months unless my probs continue to get worse. Well, I am seeing the metabolic geneticist on Thursday so I am hoping that will get me somewhere. She's supposed to be very good. I am also going to ask her about other Drs. at childrens that I might be able to see, especially a neuro and GI dr. I saw my therapist yesterday and she seemed very concerned with how I seemed to have such a visible increase in symptoms in just 2 weeks. She said she wished she could do more for me. I am so thankful for her. I'm thankful for you all too and my mother- if I didnt have you all and the few good doctors I do have, I would feel so lost and hopeless. I just wanted to thank yall. I'm sorry if this seems so depressing- believe me, yesterday I was worse off, much worse mentally but my therapist helped with that aspect. I just realize that I still have hopes and dreams I haven't accomplished and this disease, I am gonna fight it to the very end and then some- I can't let it get the best of me, or I will die trying. I'm not giving up. Thank you guys so much for being here for me- this was a major vent I needed to do. I know alot of you are having hard times too and I am glad we arent alone in this, though I hate we all have to have this disease in common. Well, I've done my venting and hurting cuz of it, grr. Hope yall have a good weekend and take it easy.

take care,

Adrienne

[Guest guest]

,

I didn't think was mentally able to learn simple sign either, but he actually appears to be doing it. There's not a lot but what he does do seems to lower his frustration level.

Alice

From: DeMoss

Laurie,I don't think that is mentally able to learn even simple signlanguage.