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

Visit our web page: WWW. caringbridge.org/ca/mitooggo

Help support my sister in her new business at : Come and see what's NEW! http://www.youravon.com/elleenmiller Your AVON representative (Sign in passcode: ElleensAVON if you are signing in for the first time :-)

[Guest guest]

Hi ,

We are all thinking of you. I'm so sorry Kira is so ill now.

Anne R

[Guest guest]

,

You have my prayers and support. Wishing there were easy answers to hard questions. Try and get some rest yourself when you can. Wish I was closer and could do something to help out.

Hugs and Prayers,

[Guest guest]

I am sorry she has been having a hard time lately. We will be praying

she starts having her energy returning and her mental status improving as

well. Sometimes being sick can be so wearing it affects us and we become

depressed. Keep us updated on how she is doing, please.

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy,SID, dev. delays, asthma, chronic vomiting...

Zipporrah (10 mon.) Mito, strokes, SID, GERD, 100% G-tube fed, asthma, trach

issues, disautonomy, hypo & hypertonicity, migraines, possible seizures,

dumping syndrome...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (7), Kezia (3), &

Marquis (2) (some with Mito symptoms)

Needed prayers for our Kira

> 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

> Visit our web page: WWW. caringbridge.org/ca/mitooggo

>

> Help support my sister in her new business at : Come and see what's

> NEW!

> http://www.youravon.com/elleenmiller Your AVON representative (Sign in

> passcode: ElleensAVON if you are signing in for the first time :-)

>

>

>