Re: Needed prayers for our Kira

[Guest guest]

In a message dated 9/19/2004 1:57:34 PM Eastern Standard Time,

mitooggo@... writes:

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.

Hi ,

My prayers and thoughts are with you guys. I certainly understand how hard

it is to be a teenager and to go through this. It wasn't so long ago that I was

there.

Have you thought about getting IV homecare to come out to give her D5 or

D10? Maybe they could even give her a PICC line temporarily and she could get

the D10 through it. The IV nurses could come out every day or two to monitor her

needs and her condition. Since her body is still so weak maybe the IV's will

make more of a difference than the GT feeds. Are you monitoring her blood

sugar? Do you know if she's even absorbing well right now?

Just a thought since when I was 16, I had IV homecare come out to give me IV

fluids every few days and it really helped. Plus you get an extra set of eyes

to watch her and report back to Dr Boles about how she's doing.

Hope she feels better soon.

Hugs, Malisa

[Guest guest]

In a message dated 9/19/2004 1:57:34 PM Eastern Standard Time,

mitooggo@... writes:

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.

Hi ,

My prayers and thoughts are with you guys. I certainly understand how hard

it is to be a teenager and to go through this. It wasn't so long ago that I was

there.

Have you thought about getting IV homecare to come out to give her D5 or

D10? Maybe they could even give her a PICC line temporarily and she could get

the D10 through it. The IV nurses could come out every day or two to monitor her

needs and her condition. Since her body is still so weak maybe the IV's will

make more of a difference than the GT feeds. Are you monitoring her blood

sugar? Do you know if she's even absorbing well right now?

Just a thought since when I was 16, I had IV homecare come out to give me IV

fluids every few days and it really helped. Plus you get an extra set of eyes

to watch her and report back to Dr Boles about how she's doing.

Hope she feels better soon.

Hugs, Malisa

[Guest guest]

In a message dated 9/19/2004 4:00:32 PM Eastern Standard Time,

lfitzger@... writes:

Just an idea. Could you contact some of the camp staff or campers to give

her a call or send her some cards. It sounds like Kira needs the strength of

others she knows. Maybe a reminder that they are counting on her friendship

might help a bit with the depression.

Hi Laurie and ,

This is a GREAT idea. Some of my counselors from camp would actually come

with me to procedures and visit me in the hospital. They were a wonderful source

of support for me.

It might be worth calling the camps and asking if there's anything they can

do. My camp memories really sustained me through the year when things got

tough.

Malisa

[Guest guest]

I will keep your family in my thoughts and prayers. It just isn't fair that

you have to deal with so much.

Just an idea. Could you contact some of the camp staff or campers to give

her a call or send her some cards. It sounds like Kira needs the strength of

others she knows. Maybe a reminder that they are counting on her friendship

might help a bit with the depression.

Hugs to all,

laurie

> From: mitooggo@...

> Reply-To:

> Date: Sun, 19 Sep 2004 13:55:51 EDT

> To: adultmito , mito ,

> Mitoldies , Mitokids

> Subject: 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 :-)

>

>

>

>

>

[Guest guest]

,

My thoughts and prayers are with your whole family, especially

Kira. I know it is hard to be a teen dealing with this disorder. I

think that the others have had a good idea about bringing things from

camp out or having people from camp contact her.

Hugs,

a

On Sun, 19 Sep 2004 13:55:51 EDT mitooggo@... writes:

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

[Guest guest]

,

My thoughts and prayers are with your whole family, especially

Kira. I know it is hard to be a teen dealing with this disorder. I

think that the others have had a good idea about bringing things from

camp out or having people from camp contact her.

Hugs,

a

On Sun, 19 Sep 2004 13:55:51 EDT mitooggo@... writes:

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

[Guest guest]

,

My thoughts and prayers are with your whole family, especially

Kira. I know it is hard to be a teen dealing with this disorder. I

think that the others have had a good idea about bringing things from

camp out or having people from camp contact her.

Hugs,

a

On Sun, 19 Sep 2004 13:55:51 EDT mitooggo@... writes:

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