, for Nik

[Guest guest]

Hi ,

Nikki also asked how you are doing. The stress of coordinating

appts and medical care can wear you out and she is worried about you.

Nik is doing very well. She still sleeps about 18-20 hours a day.

Lookout when she is awake though, we have a ball. Her daddy, sister

and I all join her in the living room,(which is now her bedroom) and

we laugh and joke and carry on. We eat with her in there, watch

movies or tv and scream out the answers together at game shows. The

hospice team comes out to see her and check on her every day. She has

been bedbound 24/7 for months now and we were getting a bit worried

about her developing a case of " cabin fever " . We have ordered her a

lovely new wheelchair that completely lays down to make a bed. It

will also sit up or recline. That should be here within the next

month. We couldnt find a back for it that was comfortable, so I

designed and built one for her, complete with a headrest. Now if we

can just get the frame here from the manufacturer I can finish

building the chair and she can get out of bed to do things. We are

all very excited about that. The front seat of our car reclines to a

bed so we decided to take her for a surprise outing the other day. We

have an adaptor for the cigarette lighter that lets us plug her vent

into the car. Her daddy got her into the car and got her all comfy.

Then we drove to Mcs and had dinner in the parking lot. We had

a blast! Dinner out was great. Next time, I think we should put a

tablecloth on the hood, add a few candles and wait till dark to eat.

Then we drove her around our tiny town to look at all the new

construction (we are getting a few new stores in our neighborhood).

Our town is only 3 sq miles so even a few new stores is a huge deal

hehehe. She is looking forward to another " field trip " this weekend.

We will take her to dinner at a different fast food drive through (we

arent the fanciest dates she has ever had, but we do have a lot of

laughs). Well, so much for the adventures of Nik, stay tuned for the

next installment of " Nikki goes cruisin " hehehe

Juli and Nikki

> Thanks for getting back with me so quickly. If I end up going to

Cleveland in

> March I will surely let you know about the carnitine challenge

test. How is

> Nikki doing? I think of her so often and continue to pray for her

recovery.

> Have a good day!