Kathy (request for update on Audrey)

[Guest guest]

I was wondering how Audrey has been lately? You have been pretty quiet

lately so we haven't received any updates. I hope you are doing well as

well. I know it has been hard dealing with all that you as a very special

Grandmother sees, hears, and bears with in seeing Audrey, your daughter, her

husband, and the rest of the family struggle with. You have always held a

special place in my heart in this group. I have always been amazed with

your love and strength, and yet honesty about your feelings. And, beyond

all, your availability to others around who need you (especially your

family). Keep your chin up and hope you are well.

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)

Re: my baby is dying

> Dear ,

>

> My heart and prayers go out to you at this very difficult time. No parent

> should have to make the type of decisions you are having to make. My

> daughter and SIL have had to make many of the same decisions you are

> having to make and I know first hand they are not easy. The doctors told

> us a year and a half ago that Audrey would never see her second birthday

> and she just had her third Birthday in August. I am a firm believer in

> the power of prayer.

>

> I will add your precious Eva to my prayer list and I will also pray for

> strength for you in the coming days. I hope you have someone close to you

> to help you in the coming days.

>

> Praying for you,

> Kathy, grandma to Audrey, 3 years

>

> burpcloth burpcloth@...> wrote:

> hi everyone, im pretty new to the group. my baby is about 3 1/2

> months and her heart keeps getting worse. we dont know yet what kind

> of mito she has. somebody said i am lucky to be getting a diagnosis

> so early but in a way yeah but mostly no because the doctors said

> that she is showing symptoms so young and so strongly and that is

> not good. she has a lot of intestinal problems but she could live

> with that. her heart though is the problem she has septal

> hypertrophy and at the beginning of august they did another echo and

> it had grown so much so fast. they said she should have been in

> destress already and they would be surprised if she was still alive

> this time next year. (they told me all this on my birthday!) my

> husband and i said that she was already surprising them so maybe she

> would live longer than they thought and prove them wrong. she had

> another echo on aug 23 and there was no change which we thought was

> good because they knew it wasnt going to get better so at least it

> didnt get worse. but this past week she did start showing some

> distress and they did another echo on thursday and i cant remember

> the name of it but she is some fluid building up in the little bag

> around her heart. they can put a needle in her heart and drain it

> but it will just keep coming back. she probably only has a few weeks

> and they started talking about me and my husband making decisions

> about what would be ethical to do for her. we have already decided

> that we arent going to try and drag things out. if God wants her he

> is going to get her because i cant stand to see her in pain. i love

> her so much and will miss her like crazy but i want her to be in

> peace. which she is not now she has so many tubes and i.v.s and a

> nurse is always poking and prodding her. i just want to get her home

> so we can have some time together instead of visiting her in the

> hospital. now i wont be able to see her for a couple of days because

> we are about to get hit by francis. we live in melbourne but are in

> orlando. i am also still waiting on results from my sons mito

> testing. he has a much milder form if he does have it. so far we are

> only seeing low muscle tone and constipation. ok everyone thanks

> for listening to my story and i will catch up when we get power back

> because we are expecting to lose it for a few days. please pray

> for my baby her name is EVA THALIA (pronounced ava).

>

> kelly

> mom to eva and peanut

>

>

>

>

>

> Please contact mito-owner with any problems or questions.

>

>

>

[Guest guest]

Darla,

I have just had to sit back for a while. I have been reading the posts everyday and I pray for you all. Sometimes I just get overwhelmed with it all, as I know you all do as well.

Audrey is getting weaker by the day. The Make A Wish folks came last week and it looks like they are going to try to go to Disney and GKTW. As of now they are hoping to go in Nov over Thanksgiving. I am worried because she gets so tired so quickly but like Amie says, there isn't going to be any better time. Right now the one big problem is Amie's EX doesn't want their son, Alec, going because he doesn't want him to miss school. He is in the first grade! This man is such a control freak! The real reason I think is because he has always said he wants to be the one to take Alec first! This week Amie is going to go to her lawyer and see about getting a court order. Can you believe some people? Amie also already talked to the teacher and the principal and they are all for it. They said Amie can get his school work and take it with them, after all, that is what they are going to do with the other kids. Alec's

step-mother told Amie she can't believe they planned a Vacation during the school year! Enough of me ranting and raving.

Audrey is sleeping nearly 20 hours most days. When she is awake I still manage to get a smile or two. A few weeks ago they found out her Tegretol level was too high causing her to be toxic and they think that is what was causing her to run a fever for nearly two months. Her levels are better now and so is the fever. Amie and Doyle are hanging in there. They have had so major problems but seem to be working through them. In fact they are buying a house and should be moving in the end of this month. Plus, some other good news. Melinda, Doyle's 7 year old daughter that he and Amie have had custody of for 5 years is going to be adopted by Amie. We are all thrilled by this good news. Her birth mother finally is going to do what is best for Melinda. She hasn't even seen Melinda but about three times in the last 5 years. Pray that this all works out for them.

I will try to do better about keeping you all updated, but please know that I think of you all daily and I know that you understand

Also Darla, I think your idea about the older kids trying to start some sort of support group is great.

Sorry this is so long.

God be with all of you,

Kathy, grandma to Audrey, 3 yearsDarla Klein wrote:

I was wondering how Audrey has been lately? You have been pretty quiet lately so we haven't received any updates. I hope you are doing well as well. I know it has been hard dealing with all that you as a very special Grandmother sees, hears, and bears with in seeing Audrey, your daughter, her husband, and the rest of the family struggle with. You have always held a special place in my heart in this group. I have always been amazed with your love and strength, and yet honesty about your feelings. And, beyond all, your availability to others around who need you (especially your family). Keep your chin up and hope you are well.Darla: mommy toAsenath (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) Re: my baby is dying> Dear ,>> My heart and prayers go out to you at this very difficult time. No parent > should have to make the type of decisions you are having to make. My > daughter and SIL have had to make many of the same decisions you are > having to make and I know first hand they are not easy. The doctors told > us a year and a half ago that Audrey would never see her second

birthday > and she just had her third Birthday in August. I am a firm believer in > the power of prayer.>> I will add your precious Eva to my prayer list and I will also pray for > strength for you in the coming days. I hope you have someone close to you > to help you in the coming days.>> Praying for you,> Kathy, grandma to Audrey, 3 years>> burpcloth wrote:> hi everyone, im pretty new to the group. my baby is about 3 1/2> months and her heart keeps getting worse. we dont know yet what kind> of mito she has. somebody said i am lucky to be getting a diagnosis> so early but in a way yeah but mostly no because the doctors said> that she is showing symptoms so young and so strongly and that is> not good. she has a lot of intestinal problems but she could live> with that. her heart though is the problem she has

septal> hypertrophy and at the beginning of august they did another echo and> it had grown so much so fast. they said she should have been in> destress already and they would be surprised if she was still alive> this time next year. (they told me all this on my birthday!) my> husband and i said that she was already surprising them so maybe she> would live longer than they thought and prove them wrong. she had> another echo on aug 23 and there was no change which we thought was> good because they knew it wasnt going to get better so at least it> didnt get worse. but this past week she did start showing some> distress and they did another echo on thursday and i cant remember> the name of it but she is some fluid building up in the little bag> around her heart. they can put a needle in her heart and drain it> but it will just keep coming back. she probably only has a few weeks> and they

started talking about me and my husband making decisions> about what would be ethical to do for her. we have already decided> that we arent going to try and drag things out. if God wants her he> is going to get her because i cant stand to see her in pain. i love> her so much and will miss her like crazy but i want her to be in> peace. which she is not now she has so many tubes and i.v.s and a> nurse is always poking and prodding her. i just want to get her home> so we can have some time together instead of visiting her in the> hospital. now i wont be able to see her for a couple of days because> we are about to get hit by francis. we live in melbourne but are in> orlando. i am also still waiting on results from my sons mito> testing. he has a much milder form if he does have it. so far we are> only seeing low muscle tone and constipation. ok everyone thanks> for listening to

my story and i will catch up when we get power back> because we are expecting to lose it for a few days. please pray> for my baby her name is EVA THALIA (pronounced ava).>> kelly> mom to eva and peanut>>>>>> Please contact mito-owner with any problems or questions.>>>

[Guest guest]

Thank you so much for letting us know how Audrey is doing. I am sorry

she hasn't been better. It sounds like Amie has had some other issues

weighing upon her as well. Let he know we are continuing to pray for her.

I hope she is able to have then ALL go to GKTW. It would be a nice trip for

them.

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)

Re: my baby is dying

>

>

> > Dear ,

> >

> > My heart and prayers go out to you at this very difficult time. No

> > parent

> > should have to make the type of decisions you are having to make. My

> > daughter and SIL have had to make many of the same decisions you are

> > having to make and I know first hand they are not easy. The doctors

> > told

> > us a year and a half ago that Audrey would never see her second birthday

> > and she just had her third Birthday in August. I am a firm believer in

> > the power of prayer.

> >

> > I will add your precious Eva to my prayer list and I will also pray for

> > strength for you in the coming days. I hope you have someone close to

> > you

> > to help you in the coming days.

> >

> > Praying for you,

> > Kathy, grandma to Audrey, 3 years

> >

> > burpcloth burpcloth@...> wrote:

> > hi everyone, im pretty new to the group. my baby is about 3 1/2

> > months and her heart keeps getting worse. we dont know yet what kind

> > of mito she has. somebody said i am lucky to be getting a diagnosis

> > so early but in a way yeah but mostly no because the doctors said

> > that she is showing symptoms so young and so strongly and that is

> > not good. she has a lot of intestinal problems but she could live

> > with that. her heart though is the problem she has septal

> > hypertrophy and at the beginning of august they did another echo and

> > it had grown so much so fast. they said she should have been in

> > destress already and they would be surprised if she was still alive

> > this time next year. (they told me all this on my birthday!) my

> > husband and i said that she was already surprising them so maybe she

> > would live longer than they thought and prove them wrong. she had

> > another echo on aug 23 and there was no change which we thought was

> > good because they knew it wasnt going to get better so at least it

> > didnt get worse. but this past week she did start showing some

> > distress and they did another echo on thursday and i cant remember

> > the name of it but she is some fluid building up in the little bag

> > around her heart. they can put a needle in her heart and drain it

> > but it will just keep coming back. she probably only has a few weeks

> > and they started talking about me and my husband making decisions

> > about what would be ethical to do for her. we have already decided

> > that we arent going to try and drag things out. if God wants her he

> > is going to get her because i cant stand to see her in pain. i love

> > her so much and will miss her like crazy but i want her to be in

> > peace. which she is not now she has so many tubes and i.v.s and a

> > nurse is always poking and prodding her. i just want to get her home

> > so we can have some time together instead of visiting her in the

> > hospital. now i wont be able to see her for a couple of days because

> > we are about to get hit by francis. we live in melbourne but are in

> > orlando. i am also still waiting on results from my sons mito

> > testing. he has a much milder form if he does have it. so far we are

> > only seeing low muscle tone and constipation. ok everyone thanks

> > for listening to my story and i will catch up when we get power back

> > because we are expecting to lose it for a few days. please pray

> > for my baby her name is EVA THALIA (pronounced ava).

> >

> > kelly

> > mom to eva and peanut

> >

> >

> >

> >

> >

> > Please contact mito-owner with any problems or

> > questions.

> >

> >

> >

[Guest guest]

Kathy,

There is almost no exhusband story you can tell me that I won't

believe. My family has been put through the ringer this past couple

of yrs. with my ex. I have decided that it is all about control and

not at all about the welfare of the kids. What a jerk! I can't

imagine that she will have hard time getting a court order-crazy to

have to spend money on lawyers and court cost to do something like

this!

I am so sorry that Audrey has had such a hard time. Maybe now that

they found and corrected the toxic med problem she will begin to

improve some. Two yrs ago we went to Disney for Make a wish. They

expedited the process for us because we thought couldn't

wait.She was declining fast.She loved the trip and has improved

every day since. These mito kids are so strong.

I will pray for your family. And that is great news about Melinda!

I hope that the trip goes off without a hitch and the whole family

can enjoy some R&R.

Dawn

[Guest guest]

Kathy:

I believe how Amie is going about getting Alec to go with them is the right

way. Speaking to the teachers and principal. They probably understand their

family situation and how important this will be to all of you. I know I don't

want to say this; but.....if something should happen with Audrey after this

happens as Deb had pointed out this will be a wonderful memory for all of them

as a family and that is what is so very important right now. If they would keep

Alec home he would not be part of this process and (again I don't like thinking

this way) but help him with the grieving process if that time should ever come.

He is a part of this family and should be included in this situation. Now is

the time to take him out of school; because as my sister says, once they are in

middle school it is very hard to get caught up. Elementary school is the time

for vacations because you can take school work with you. Plus they can make

this an educational experience for him. Journal writing; picture taking for the

whole class to see what they did, send a post card. You see you get writing

skills going, reading skills, I could go on and on. The other big gun she could

use is to ask the guidance counselor for suggestions on this matter. I can't

believe her ex had the gaul to say those things knowing what they are going

through. Audrey is a sister to Alec and is an important person to him. He's

been a part of her life these two years. Did the man even think to ask Alec

what he thought about all of this (?) probably not. As you said when you are a

control freak and an ex you try to have control over your ex once again and

unfortunantely the kid is the one caught in the middle. I pray that November

comes quickly and that they have a super(can't spell the rest of the word right

now, but you know what one I mean) time in Florida. Especially after all the

hurricane stuff they had. Sorry this is so long but I've been thinking about

you and the whole family this summer and wonder how things were going. Tell

Audrey that many are thinking of her and tell Amie and Doyle the same thing. We

are so on their side and congrats on the house and the adoption. They have such

loving hearts and are looking out for the best interests of everyone. Say do

you get to go to Florida too as an extra? Didn't some one else take a

grandmother along for support? I think you deserve a fun filled time with

everyone for all the support you have given them. A true roller coaster ride.

Nerenhausen

mom to Leah

Darla Klein wrote:

> Thank you so much for letting us know how Audrey is doing. I am sorry

> she hasn't been better. It sounds like Amie has had some other issues

> weighing upon her as well. Let he know we are continuing to pray for her.

> I hope she is able to have then ALL go to GKTW. It would be a nice trip for

> them.

>

> 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)

>

> Re: my baby is dying

> >

> >

> > > Dear ,

> > >

> > > My heart and prayers go out to you at this very difficult time. No

> > > parent

> > > should have to make the type of decisions you are having to make. My

> > > daughter and SIL have had to make many of the same decisions you are

> > > having to make and I know first hand they are not easy. The doctors

> > > told

> > > us a year and a half ago that Audrey would never see her second birthday

> > > and she just had her third Birthday in August. I am a firm believer in

> > > the power of prayer.

> > >

> > > I will add your precious Eva to my prayer list and I will also pray for

> > > strength for you in the coming days. I hope you have someone close to

> > > you

> > > to help you in the coming days.

> > >

> > > Praying for you,

> > > Kathy, grandma to Audrey, 3 years

> > >

> > > burpcloth burpcloth@...> wrote:

> > > hi everyone, im pretty new to the group. my baby is about 3 1/2

> > > months and her heart keeps getting worse. we dont know yet what kind

> > > of mito she has. somebody said i am lucky to be getting a diagnosis

> > > so early but in a way yeah but mostly no because the doctors said

> > > that she is showing symptoms so young and so strongly and that is

> > > not good. she has a lot of intestinal problems but she could live

> > > with that. her heart though is the problem she has septal

> > > hypertrophy and at the beginning of august they did another echo and

> > > it had grown so much so fast. they said she should have been in

> > > destress already and they would be surprised if she was still alive

> > > this time next year. (they told me all this on my birthday!) my

> > > husband and i said that she was already surprising them so maybe she

> > > would live longer than they thought and prove them wrong. she had

> > > another echo on aug 23 and there was no change which we thought was

> > > good because they knew it wasnt going to get better so at least it

> > > didnt get worse. but this past week she did start showing some

> > > distress and they did another echo on thursday and i cant remember

> > > the name of it but she is some fluid building up in the little bag

> > > around her heart. they can put a needle in her heart and drain it

> > > but it will just keep coming back. she probably only has a few weeks

> > > and they started talking about me and my husband making decisions

> > > about what would be ethical to do for her. we have already decided

> > > that we arent going to try and drag things out. if God wants her he

> > > is going to get her because i cant stand to see her in pain. i love

> > > her so much and will miss her like crazy but i want her to be in

> > > peace. which she is not now she has so many tubes and i.v.s and a

> > > nurse is always poking and prodding her. i just want to get her home

> > > so we can have some time together instead of visiting her in the

> > > hospital. now i wont be able to see her for a couple of days because

> > > we are about to get hit by francis. we live in melbourne but are in

> > > orlando. i am also still waiting on results from my sons mito

> > > testing. he has a much milder form if he does have it. so far we are

> > > only seeing low muscle tone and constipation. ok everyone thanks

> > > for listening to my story and i will catch up when we get power back

> > > because we are expecting to lose it for a few days. please pray

> > > for my baby her name is EVA THALIA (pronounced ava).

> > >

> > > kelly

> > > mom to eva and peanut

> > >

> > >

> > >

> > >

> > >

> > > Please contact mito-owner with any problems or

> > > questions.

> > >

> > >

> > >