A High Calorie Thank YOU!

[Guest guest]

Dear SCD Pals,

I am so grateful for the response. I asked all three list serves at once! I

now have a few NEW ideas that I am going to try.

I can not thank you guys enough. If we can do this, we are going to stay a

nursing couple and continue " fanatical " SCD with our daughter.

I want to give personal thanks to those who shared that they extended nurse

their babies. Espec. the one with the five year old and 3 and a half year old.

I truly need to let GO and Let God with this one. IT is saving her from a

possible G tube and IV port...the fate of most kids with mitochondrial disease.

AND yes....she is very " healthy " considering her issues.

We do not know yet which one of forty of the mitochondrial diseases she has.

The doctors are ALL treating her " as if " at this time. We will find out end of

July. I will give update at that time. Some are worse than others. But this

" look of health " is ONE of the reason they (doctors) did not hassle me about the

diet. BUT it is exhausting keeping her looking this good. AS I found out when

I tried to wean her and it ended in disaster. Dark circles, low energy,

fatigue and too much weight loss. No more of that for now. I will just not

think about her age and give her my life saving milk.

I also am looking into respite for the first time since her birth. My husband

and I have not been on a date for over three years. I think she could handle

now. Before it would have been out of the question. Our neighbors (a mom and

daughter) are going to help us to get out of here for a few hours. It is a bit

scary, because her seizures are often stress induced. But we need a break, I

won't recognize my husband.

****IF ANY OF YOU THINK OF ANY MORE HIGH CALORIE IDEAS send them attention:

" MORE KIKI HIGH CALORIES. " *****

Antoinette and family of Five

(SCD 2/06)

[Guest guest]

I think it is a really good idea for you to start getting some sort of respit

care. Even if it is just friends from church coming over to supervise while you

take a nap, you've got to start looking in to ways to get a break. I know it is

hard to get sleep when you're nursing like a newborn's schedule. Whenever I

have a newborn...which is about every two years...I have my mom or husband bring

the baby to me when it is time to nurse(ife I'm sleeping), and then they take

the baby as soon as nursing is finished so I can go back to sleep. I'm thinking

this would be good for you if you could just get friends to rotate coming over

to supervise the children while you sleep for a while. They could just bring

her to your room at nursing time, and then come back to get her when she's done.

Also, don't under estimate the teenagers at your church. Ask a youth minister

or pastor to get a group of them to come over to clean for you. They could do

it in pairs, and sign up so that none of them are " on duty " every week for

cleaning. Also, find out how to contact your local homeschool group(I know

there must be one), and ask them about helping. Home school families are

typically very service oriented, and their kids are right in there to help. If

you don't know how to get in touch with someone from a local homeschool

organization, tell me where you live. I can find out for you.

Meleah

A " High Calorie " Thank YOU!

Dear SCD Pals,

I am so grateful for the response. I asked all three list serves at once! I

now have a few NEW ideas that I am going to try.

I can not thank you guys enough. If we can do this, we are going to stay a

nursing couple and continue " fanatical " SCD with our daughter.

I want to give personal thanks to those who shared that they extended nurse

their babies. Espec. the one with the five year old and 3 and a half year old. I

truly need to let GO and Let God with this one. IT is saving her from a possible

G tube and IV port...the fate of most kids with mitochondrial disease. AND

yes....she is very " healthy " considering her issues.

We do not know yet which one of forty of the mitochondrial diseases she has.

The doctors are ALL treating her " as if " at this time. We will find out end of

July. I will give update at that time. Some are worse than others. But this

" look of health " is ONE of the reason they (doctors) did not hassle me about the

diet. BUT it is exhausting keeping her looking this good. AS I found out when I

tried to wean her and it ended in disaster. Dark circles, low energy, fatigue

and too much weight loss. No more of that for now. I will just not think about

her age and give her my life saving milk.

I also am looking into respite for the first time since her birth. My husband

and I have not been on a date for over three years. I think she could handle

now. Before it would have been out of the question. Our neighbors (a mom and

daughter) are going to help us to get out of here for a few hours. It is a bit

scary, because her seizures are often stress induced. But we need a break, I

won't recognize my husband.

****IF ANY OF YOU THINK OF ANY MORE HIGH CALORIE IDEAS send them attention:

" MORE KIKI HIGH CALORIES. " *****

Antoinette and family of Five

(SCD 2/06)

[Guest guest]

Dear Meleah,

I thank you! WE live in Colorado Springs Colorado. Yes...I need

respite....up until now her autism and issues would never have allowed

it. I simply did not trust anyone.

I nap during the day when my two girls nap. This has saved me on the

most part. But I am ready now to ask for help. I am not " super " mom.

But realize now that I have been in denial and am awakening to my own

needs.

Antoinette

[Guest guest]

Oh, boy. I'm sure there are more than just one home school co-op in the city

plus have you ever thought about contacting Focus on the Family to ask if they

can point you to some churches, organizations, ect. that you could ask to help

with respit, housekeeping, ect.? I bet they'd have ideas of who to send you to

in town.

Meleah

Re: A " High Calorie " Thank YOU!

Dear Meleah,

I thank you! WE live in Colorado Springs Colorado. Yes...I need

respite....up until now her autism and issues would never have allowed

it. I simply did not trust anyone.

I nap during the day when my two girls nap. This has saved me on the

most part. But I am ready now to ask for help. I am not " super " mom.

But realize now that I have been in denial and am awakening to my own

needs.

Antoinette

[Guest guest]

I think you ARE a " super " mom with everything you have been doing. And

part of being a super mom is knowing when to take care of yourself so

that you can keep on being " super. " Your kids are so lucky to have

you! I hope that you are able to locate some of the help that has been

suggested.

-K

>

> Dear Meleah,

>

> I thank you! WE live in Colorado Springs Colorado. Yes...I need

> respite....up until now her autism and issues would never have

allowed

> it. I simply did not trust anyone.

>

> I nap during the day when my two girls nap. This has saved me on the

> most part. But I am ready now to ask for help. I am not " super " mom.

> But realize now that I have been in denial and am awakening to my own

> needs.

>

> Antoinette

>

>

>

>

>

>