Needed prayers for our Kira

[Guest guest]

Hi guys,

Kira and both have spent time in the hospital this past week and

a half. They seemed to have caught a virus that has laid them both out flat.

however after 4 days in the hospital on D-10 and an antibiotic is

perking up. Our Kira is a different story. We brought her home and at that

point

she appeared to be feeling a little better. However she has gotten steadily

worse. She is sleeping 18 hours a day literally. She can barely hold her

head up, she cannot hold her arms up and keep them up at all. She is running

low

grade to sub temp fevers. I have been in close contact with doctor Boles

(our Hero for sure) and we are running her G-tube pump 24 hours a day with

nu-Basic juice at 80 per hour. DR Boles is thinking that this should be helping

and

is the same as when she is getting the D-10 IV. However she is not

responding. I am a little scared right now. She is so weak. They do not want

to

admit her unless they have to again because she can be exposed to God knows what

in the hospital and she can't fight it right now. I haven't had sleep in 2

weeks and I am a bit punchy! LOL I am working full time right now as well, with

several friends who are trying their best to help out when they can. Any way

I guess I am just calling for some extra prayers and good thoughts to be sent

her way. She is so miserable and I worry about her level of depression. She

truly is sick of being sick! I don't know how to help her through this part

of it all. We have gone to the counselor, she is on Celexa and closely

monitored, I just think she is giving up at times. She has been through 14

years of

hell and is tired of it. She told me the other day, Mom I helped Dr. Boles

find MIDS, haven't I done enough? What do you say to a child who says that? It

is true she has been an interracial part of the research on MIDS but she can't

just give up and say I am tired now can she?

Sorry, I am tired and ranting here I guess. Thanks for the prayers.

HUGS!

O and crew - Kira,, and Krisalynn Mitochondrial Myopathy-MIDS

Maternally Inherited Dysautonomia- NVD ( Nuro Vascular Dystrophy) and dad

Enrique

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[Guest guest]

Dear ,

Sending love and prayers to you all, but especially to Kira.

Yours very sincerely,

PA