Re: Kathy (MAW gift for Audrey)

[Guest guest]

Sorry she couldn't travel, but we chose the tv as well and it has been more

of a blessing than I even expected it to be. One of Asenath's favorite

things to do (especially when fatigued) is to relax/lay on the couch,

snuggle, and watch a good movie; most of the time a cartoon. We try to

encourage he to be active, but rests are important too and this has really

helped. I hope she will enjoy hers as much as Asenath has.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

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

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

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

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

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

Re: Does anyone else have a difficult time during the

holidays?

> ,

>

> What a good memory you have! Yes Audrey was to get her MAW to Disneyworld

> in November, and yes, there was a problem because Amie's son Alec, from

> her first marriage, was possibly not going to be able to go because his

> Dad didn't want him to miss school, he is in the first grade. Well,

> sometimes things have a way of being taken out of our hands. Anyway, In

> September Audrey had pneumonia three times and she was so weak and Amie

> and Doyle decided she was way to weak to even consider a trip out of state

> so they decided on a large screen TV and some videos for Audrey's MAW.

> She loves the 52 inch big screen and I know she will enjoy the TV much

> more than she would have going to Disney. She really gets tired so easy

> now. However, she always has enough energy to give grandma that smile

> that I so need to see!

>

> I really have to go as I just home from a long 12 hours at work and the

> bed looks pretty inviting right now.

>

> God be with you all,

> Kathy, grandma to Audrey, 3 years

>

> Sorensen wrote:

> Say Kathy:

>

> Wasn't Amie and Doyle going with Audrey and the gang on a Make A Wish

> trip this past November. I thought there was a problem with the one boy

> being able to have time off (which still amazed me) and was wondering if

> they ever went. So glad you guys got to be together. So glad for

> Audrey's blessed smile and what it can bring to others.

>

> Nerenhausen

> mom to Leah

>

> kathy boone wrote:

>

> > ,

> >

> > The holidays have always been hard for me as we have always lived away

> > from our families and I would be jealous of my brother and all the

> > talk about getting together with our Mom and Dad and all the great

> > times they were having. Then something happened and I realized I had

> > a wonderful family right with me in my children. As they grew and

> > married our family begin to grow and we established our own

> > traditions. The grandchildren have made the holidays so much better!

> >

> > I was doing really well this year then I went Christmas shopping. I

> > did great until I tried to shop for Audrey. It is so hard knowing

> > what to get her. I just parked my cart and went to Amie's so I could

> > get my Grandma fix for the day from my special little girl, Audrey.

> > When I see her I realize there is more to the holidays than food, fun

> > and presents.

> >

> > A few years ago my family, my son and daughter and their spouses, and

> > my husband and I were not on good terms. Somethings had happened that

> > I won't go into, in fact they aren't even important anymore. Then

> > something, or I should say someone happened into our lives. That

> > someone would be Audrey. I truely believe Audrey was sent to us to

> > heal our family. This past Sunday I had both of my children and their

> > families together at my house for Thanksgiving. It was one of the

> > happiest days of my life. As I sat holding Audrey and my other

> > grandchildren were all running around, I saw Audrey smile and I know

> > she knows what she has done. She, with the help of God, fixed things

> > in my family. Now we truly are a family again.

> >

> > I think I have gotten a little off the subject, but I just want to say

> > Thanks to my beautiful little Audrey for making things right again. I

> > love her more than she will ever know.

> >

> > Happy Holidays to my Mito Family,

> > Kathy, grandma to Audrey, 3 years

> >

> > nu12002 wrote:

> >

> >

> > My son is 5 1/2 now so you would think I'd handle the holidays

> > better. But every year around this time I seem to get depressed. My

> > is severely delayed and I guess buying Xmas presents reminds me

> > that he hasn't really improved in 5 years. In fact each year he

> > seems to develop more issues. He was born in September so that first

> > Xmas we were blissfully unaware of any problems. I also have an

> > older son who may be autistic and/or bipolar(mito related?) He is

> > becoming more of a behavioral problem lately.

> > I normally am very grateful that my is in better health than

> > some. I can't even imagine those who have lost their angels and what

> > they go through. But I am usually very aware of how fortunate we

> > are. But this time of year is just really difficult for me. My

> > husband is having a hard time being patient with me. He's such a

> > wonderful husband & father and very calm and rational. But when my

> > mood is a little dark it seems to affect him as well.

> > Don't get me wrong; I'm not lying in bed all day. I get up each

> > morning and do my routine, I cooked Thanksgiving dinner & I helped

> > decorate for Xmas already. But inside I'm just so sad. I call it

> > being functionally depressed-LOL

> > I've told my husband that my heart just aches for both my sons. Any

> > parent wants the best for their kids and it kills me that they have

> > so many issues. I mourn a little for the " normal " kids that they

> > should have been. I also carry the guilt that their issues are my

> > fault. I didn't do anything wrong but since I carried them I feel

> > that I'm to blame. I don't say that so someone can absolve my

> > guilt. I tell my husband that I will always feel a little

> > responsible no matter what the docs say.

> > I'm sorry if I made anyone else sad. I'm sure you all have bad

> > days/weeks. I guess it helps to get it out. Thanks for listening:)

> > Blessings,

> >

> >

> >

> >

> >

> >

> >

> > Please contact mito-owner with any problems or

> > questions.

> >

> >

> >

> >

> > Please contact mito-owner with any problems or

> > questions.

> >

> >

> >

[Guest guest]

Sorry she couldn't travel, but we chose the tv as well and it has been more

of a blessing than I even expected it to be. One of Asenath's favorite

things to do (especially when fatigued) is to relax/lay on the couch,

snuggle, and watch a good movie; most of the time a cartoon. We try to

encourage he to be active, but rests are important too and this has really

helped. I hope she will enjoy hers as much as Asenath has.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

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

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

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

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

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

Re: Does anyone else have a difficult time during the

holidays?

> ,

>

> What a good memory you have! Yes Audrey was to get her MAW to Disneyworld

> in November, and yes, there was a problem because Amie's son Alec, from

> her first marriage, was possibly not going to be able to go because his

> Dad didn't want him to miss school, he is in the first grade. Well,

> sometimes things have a way of being taken out of our hands. Anyway, In

> September Audrey had pneumonia three times and she was so weak and Amie

> and Doyle decided she was way to weak to even consider a trip out of state

> so they decided on a large screen TV and some videos for Audrey's MAW.

> She loves the 52 inch big screen and I know she will enjoy the TV much

> more than she would have going to Disney. She really gets tired so easy

> now. However, she always has enough energy to give grandma that smile

> that I so need to see!

>

> I really have to go as I just home from a long 12 hours at work and the

> bed looks pretty inviting right now.

>

> God be with you all,

> Kathy, grandma to Audrey, 3 years

>

> Sorensen wrote:

> Say Kathy:

>

> Wasn't Amie and Doyle going with Audrey and the gang on a Make A Wish

> trip this past November. I thought there was a problem with the one boy

> being able to have time off (which still amazed me) and was wondering if

> they ever went. So glad you guys got to be together. So glad for

> Audrey's blessed smile and what it can bring to others.

>

> Nerenhausen

> mom to Leah

>

> kathy boone wrote:

>

> > ,

> >

> > The holidays have always been hard for me as we have always lived away

> > from our families and I would be jealous of my brother and all the

> > talk about getting together with our Mom and Dad and all the great

> > times they were having. Then something happened and I realized I had

> > a wonderful family right with me in my children. As they grew and

> > married our family begin to grow and we established our own

> > traditions. The grandchildren have made the holidays so much better!

> >

> > I was doing really well this year then I went Christmas shopping. I

> > did great until I tried to shop for Audrey. It is so hard knowing

> > what to get her. I just parked my cart and went to Amie's so I could

> > get my Grandma fix for the day from my special little girl, Audrey.

> > When I see her I realize there is more to the holidays than food, fun

> > and presents.

> >

> > A few years ago my family, my son and daughter and their spouses, and

> > my husband and I were not on good terms. Somethings had happened that

> > I won't go into, in fact they aren't even important anymore. Then

> > something, or I should say someone happened into our lives. That

> > someone would be Audrey. I truely believe Audrey was sent to us to

> > heal our family. This past Sunday I had both of my children and their

> > families together at my house for Thanksgiving. It was one of the

> > happiest days of my life. As I sat holding Audrey and my other

> > grandchildren were all running around, I saw Audrey smile and I know

> > she knows what she has done. She, with the help of God, fixed things

> > in my family. Now we truly are a family again.

> >

> > I think I have gotten a little off the subject, but I just want to say

> > Thanks to my beautiful little Audrey for making things right again. I

> > love her more than she will ever know.

> >

> > Happy Holidays to my Mito Family,

> > Kathy, grandma to Audrey, 3 years

> >

> > nu12002 wrote:

> >

> >

> > My son is 5 1/2 now so you would think I'd handle the holidays

> > better. But every year around this time I seem to get depressed. My

> > is severely delayed and I guess buying Xmas presents reminds me

> > that he hasn't really improved in 5 years. In fact each year he

> > seems to develop more issues. He was born in September so that first

> > Xmas we were blissfully unaware of any problems. I also have an

> > older son who may be autistic and/or bipolar(mito related?) He is

> > becoming more of a behavioral problem lately.

> > I normally am very grateful that my is in better health than

> > some. I can't even imagine those who have lost their angels and what

> > they go through. But I am usually very aware of how fortunate we

> > are. But this time of year is just really difficult for me. My

> > husband is having a hard time being patient with me. He's such a

> > wonderful husband & father and very calm and rational. But when my

> > mood is a little dark it seems to affect him as well.

> > Don't get me wrong; I'm not lying in bed all day. I get up each

> > morning and do my routine, I cooked Thanksgiving dinner & I helped

> > decorate for Xmas already. But inside I'm just so sad. I call it

> > being functionally depressed-LOL

> > I've told my husband that my heart just aches for both my sons. Any

> > parent wants the best for their kids and it kills me that they have

> > so many issues. I mourn a little for the " normal " kids that they

> > should have been. I also carry the guilt that their issues are my

> > fault. I didn't do anything wrong but since I carried them I feel

> > that I'm to blame. I don't say that so someone can absolve my

> > guilt. I tell my husband that I will always feel a little

> > responsible no matter what the docs say.

> > I'm sorry if I made anyone else sad. I'm sure you all have bad

> > days/weeks. I guess it helps to get it out. Thanks for listening:)

> > Blessings,

> >

> >

> >

> >

> >

> >

> >

> > Please contact mito-owner with any problems or

> > questions.

> >

> >

> >

> >

> > Please contact mito-owner with any problems or

> > questions.

> >

> >

> >