Needed prayers for our Kira

[Guest guest]

,

I am happy to pray for your Kira and for you and all of your family.

Joanne

[Guest guest]

dear , Prayers for Kira and and all of you coming your

way. Take care, Celia

> 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]

My prayers are for your daughter and your family. I hope you get

her spirits up and that she starts feeling better soon.

Hugs,

Maggie

> 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 :-)

>

>

>

>

>