Re: Lucas's condition

[Guest guest]

hey Kim

You have every right to cry out in pain. My son is not as severely affected.

My heart bleeds for you. I always hurt so bad when I hear of a situation

like yours. Just know I am praying for you and your dear Lucas. Colby

wasn't supposed to live beyond 2 and he 12 today. When things get really

tough, don't try to think ahead, just take one minute at a time. I am so

sorry for your situation. I think we all will be praying for you.

Love

mom to Colby 12, COX IV, LCHAD, ADHD, Chad 14 healthy, Caleb 9 also

healthy

[Guest guest]

Kim,

Sending you a HUGE HUG. Lucas is so lucky to have you

for a mom. We to are continuing to pray for a miracle for Lucas. I am here for you.

Has Lucas been feeling pretty well after the biopsy? No problems?

Do you think we could meet for lunch on Wednesday the 12th in Mobile? We are coming down to get uniforms for my oldest daughter Brittney 16 and a prom dress hopefully on a great sale! We would love to meet if you and Lucas are up to it. Just email and let me know.

Love ya!

Horsley

Lucas's condition

Hello to all you wonderful people

I have a update on my boy! We went to see Dr. Shoffner and got news that my son is quiet a bit more severe than I ever realized. I wonder if there is somebody out there that has child with the similar symptoms. I'm sorry to ask such hard questions, I know that all of our children with mito are angels...but is there someone that has a child that's as close to being one as mine is....? The news that I got from Dr. Shoffner was very hard to hear. I thought that Lucas was doing ok with everything but now I have found out that Lucas is not so good. His MRI's are showing that half of the right side of his brain is effected and almost half of the left side is affected too. There is fluid collecting on both sides and his brain is shrinking. Lucas apperance is so good...so its hard to believe such bad things are going on inside. He is 3 years old (April 15th) and is a big boy..he weighs 44 pounds and is 40 inches tall. He is getting hard to carry to say the least. He is blind, and has a g-tube, not talking, walking, crawling,sitting, he is totally dependant. All this has happend over 1 year. I am having the hardest time now. It seemed as if I didnt know the severity of his condition things was a little better. Now..I am so saddend...my heart hurts and I know that all of your do to with your children...Sorry to ramble on...its gonna be a long three months. We had a muscle biopsy, skin biopsy, and spinal tap..blood work. Dr. Shoffner informed me that he wouldnt be surprized if Lucas doesnt have another major decline in his condition or if not the worst in 6 months. I'm not doing so well with this news. Any ideas....I feel so helpless to Lucas..and knowing what lies ahead for him. I thought all this time Lucas was getting a little better. I have even canceled Lucas's appoint once before with Dr. Shoffner because I thought he was better. And now..I am over whelmed in what's next and what should I do now, I am just crying out..I know I must sound nuts, which I am right now..I will stop rambling on and take a deep breath. Thanks to all of you wonderful people for answering my questions and giving me great advise. I am so thankful to all of you. God Bless all of you and your children who are suffering for this terrible mito stuff.

Love from Pensacola, Florida

[Guest guest]

Kim,

Sending you a HUGE HUG. Lucas is so lucky to have you

for a mom. We to are continuing to pray for a miracle for Lucas. I am here for you.

Has Lucas been feeling pretty well after the biopsy? No problems?

Do you think we could meet for lunch on Wednesday the 12th in Mobile? We are coming down to get uniforms for my oldest daughter Brittney 16 and a prom dress hopefully on a great sale! We would love to meet if you and Lucas are up to it. Just email and let me know.

Love ya!

Horsley

Lucas's condition

Hello to all you wonderful people

I have a update on my boy! We went to see Dr. Shoffner and got news that my son is quiet a bit more severe than I ever realized. I wonder if there is somebody out there that has child with the similar symptoms. I'm sorry to ask such hard questions, I know that all of our children with mito are angels...but is there someone that has a child that's as close to being one as mine is....? The news that I got from Dr. Shoffner was very hard to hear. I thought that Lucas was doing ok with everything but now I have found out that Lucas is not so good. His MRI's are showing that half of the right side of his brain is effected and almost half of the left side is affected too. There is fluid collecting on both sides and his brain is shrinking. Lucas apperance is so good...so its hard to believe such bad things are going on inside. He is 3 years old (April 15th) and is a big boy..he weighs 44 pounds and is 40 inches tall. He is getting hard to carry to say the least. He is blind, and has a g-tube, not talking, walking, crawling,sitting, he is totally dependant. All this has happend over 1 year. I am having the hardest time now. It seemed as if I didnt know the severity of his condition things was a little better. Now..I am so saddend...my heart hurts and I know that all of your do to with your children...Sorry to ramble on...its gonna be a long three months. We had a muscle biopsy, skin biopsy, and spinal tap..blood work. Dr. Shoffner informed me that he wouldnt be surprized if Lucas doesnt have another major decline in his condition or if not the worst in 6 months. I'm not doing so well with this news. Any ideas....I feel so helpless to Lucas..and knowing what lies ahead for him. I thought all this time Lucas was getting a little better. I have even canceled Lucas's appoint once before with Dr. Shoffner because I thought he was better. And now..I am over whelmed in what's next and what should I do now, I am just crying out..I know I must sound nuts, which I am right now..I will stop rambling on and take a deep breath. Thanks to all of you wonderful people for answering my questions and giving me great advise. I am so thankful to all of you. God Bless all of you and your children who are suffering for this terrible mito stuff.

Love from Pensacola, Florida

[Guest guest]

Please don't ever apoloigize about sharing feelings. That's why we are here. You are going through a very trying time. Please know that my thoughts are with you,and especially Lucas. My heart is with you.... I can't find the adequate words to comfort you. Just know We are here. God Bless You and Lucas.

Robin

[Guest guest]

Please don't ever apoloigize about sharing feelings. That's why we are here. You are going through a very trying time. Please know that my thoughts are with you,and especially Lucas. My heart is with you.... I can't find the adequate words to comfort you. Just know We are here. God Bless You and Lucas.

Robin

[Guest guest]

I am sorry to hear about Lucas regression. It must be overwhelming news. Is there anything they can do for his brain? Slow done what is happening?

love,

Krystena

Lucas's condition

Hello to all you wonderful people

I have a update on my boy! We went to see Dr. Shoffner and got news that my son is quiet a bit more severe than I ever realized. I wonder if there is somebody out there that has child with the similar symptoms. I'm sorry to ask such hard questions, I know that all of our children with mito are angels...but is there someone that has a child that's as close to being one as mine is....? The news that I got from Dr. Shoffner was very hard to hear. I thought that Lucas was doing ok with everything but now I have found out that Lucas is not so good. His MRI's are showing that half of the right side of his brain is effected and almost half of the left side is affected too. There is fluid collecting on both sides and his brain is shrinking. Lucas apperance is so good...so its hard to believe such bad things are going on inside. He is 3 years old (April 15th) and is a big boy..he weighs 44 pounds and is 40 inches tall. He is getting hard to carry to say the least. He is blind, and has a g-tube, not talking, walking, crawling,sitting, he is totally dependant. All this has happend over 1 year. I am having the hardest time now. It seemed as if I didnt know the severity of his condition things was a little better. Now..I am so saddend...my heart hurts and I know that all of your do to with your children...Sorry to ramble on...its gonna be a long three months. We had a muscle biopsy, skin biopsy, and spinal tap..blood work. Dr. Shoffner informed me that he wouldnt be surprized if Lucas doesnt have another major decline in his condition or if not the worst in 6 months. I'm not doing so well with this news. Any ideas....I feel so helpless to Lucas..and knowing what lies ahead for him. I thought all this time Lucas was getting a little better. I have even canceled Lucas's appoint once before with Dr. Shoffner because I thought he was better. And now..I am over whelmed in what's next and what should I do now, I am just crying out..I know I must sound nuts, which I am right now..I will stop rambling on and take a deep breath. Thanks to all of you wonderful people for answering my questions and giving me great advise. I am so thankful to all of you. God Bless all of you and your children who are suffering for this terrible mito stuff.

Love from Pensacola, Florida

[Guest guest]

hey Kim

Colby has agenesis of the corpus callosum, it is the muscles that connect the

right and left side if the brain. This is probably why he does not suffer

seizures as so many do. He has been diagnosed with encephopathy, they say an

overall slowing down of the brain, but next MRI years later did not show

that. Colby suffers the most with respiratory problems. He does get

acidodic quite easy with illness. We have not been in the hospital for 18

months! Although almost was admitted in April for aspirating with a cough

and not being able to breathe. We give him the mito coctail, although since

his g-tube is gone he does not get the b vitamins, which I never saw a

noticible improvement anyway. I just hope you will have a miracle. Thanks

for posting back.

God bless you!

mom to Colby 12, COX IV, LCHAD, ADHD, Chad 14 healthy, Caleb 9 also

healthy

[Guest guest]

In a message dated 6/9/02 2:02:07 PM Pacific Daylight Time,

cccccclark@... writes:

<< Colby

wasn't supposed to live beyond 2 and he 12 today. >>

That's one thing that I came away from the conference with---HOPE!! It was

so unbelievably reassuring to see all of these brilliant minds

working/networking together....all to develop clinical standards for

diagnosing mito, new/helpful treatments for mito...and of course.....working

towards a cure!!!! :-)

Dena

[Guest guest]

In a message dated 6/9/02 2:02:07 PM Pacific Daylight Time,

cccccclark@... writes:

<< Colby

wasn't supposed to live beyond 2 and he 12 today. >>

That's one thing that I came away from the conference with---HOPE!! It was

so unbelievably reassuring to see all of these brilliant minds

working/networking together....all to develop clinical standards for

diagnosing mito, new/helpful treatments for mito...and of course.....working

towards a cure!!!! :-)

Dena

[Guest guest]

If there is anyway to slow it down I do not know of it yet. I wish I could find out if there is a way to slow it down. He has abnormal mylenization and his white matter is just going away. He is collecting fluids due the shrinking of his brain.

Thanks so much,

Kim

Krystena s wrote:

I am sorry to hear about Lucas regression. It must be overwhelming news. Is there anything they can do for his brain? Slow done what is happening?

love,

Krystena

Lucas's condition

Hello to all you wonderful people

I have a update on my boy! We went to see Dr. Shoffner and got news that my son is quiet a bit more severe than I ever realized. I wonder if there is somebody out there that has child with the similar symptoms. I'm sorry to ask such hard questions, I know that all of our children with mito are angels...but is there someone that has a child that's as close to being one as mine is....? The news that I got from Dr. Shoffner was very hard to hear. I thought that Lucas was doing ok with everything but now I have found out that Lucas is not so good. His MRI's are showing that half of the right side of his brain is effected and almost half of the left side is affected too. There is fluid collecting on both sides and his brain is shrinking. Lucas apperance is so good...so its hard to believe such bad things are going on inside. He is 3 years old (April 15th) and is a big boy..he weighs 44 pounds and is 40 inches tall. He is getting hard to carry to say the least. He is blind, and has a g-tube, not talking, walking, crawling,sitting, he is totally dependant. All this has happend over 1 year. I am having the hardest time now. It seemed as if I didnt know the severity of his condition things was a little better. Now..I am so saddend...my heart hurts and I know that all of your do to with your children...Sorry to ramble on...its gonna be a long three months. We had a muscle biopsy, skin biopsy, and spinal tap..blood work. Dr. Shoffner informed me that he wouldnt be surprized if Lucas doesnt have another major decline in his condition or if not the worst in 6 months. I'm not doing so well with this news. Any ideas....I feel so helpless to Lucas..and knowing what lies ahead for him. I thought all this time Lucas was getting a little better. I have even canceled Lucas's appoint once before with Dr. Shoffner because I thought he was better. And now..I am over whelmed in what's next and what should I do now, I am just crying out..I know I must sound nuts, which I am right now..I will stop rambling on and take a deep breath. Thanks to all of you wonderful people for answering my questions and giving me great advise. I am so thankful to all of you. God Bless all of you and your children who are suffering for this terrible mito stuff.

Love from Pensacola, Florida

[Guest guest]

, Thanks so much for the encouraging news. I pray for a miracle everyday for my boy. What did you do different for Colby? Was his brain effected? Thanks again and thanks so much for the prayers.

Love,

Kim, mom to Lucas

cccccclark@... wrote: hey KimYou have every right to cry out in pain. My son is not as severely affected. My heart bleeds for you. I always hurt so bad when I hear of a situation like yours. Just know I am praying for you and your dear Lucas. Colby wasn't supposed to live beyond 2 and he 12 today. When things get really tough, don't try to think ahead, just take one minute at a time. I am so sorry for your situation. I think we all will be praying for you.Love mom to Colby 12, COX IV, LCHAD, ADHD, Chad 14 healthy, Caleb 9 also healthyPlease contact mito-owner with any problems or questions.

[Guest guest]

, Thanks so much for the encouraging news. I pray for a miracle everyday for my boy. What did you do different for Colby? Was his brain effected? Thanks again and thanks so much for the prayers.

Love,

Kim, mom to Lucas

cccccclark@... wrote: hey KimYou have every right to cry out in pain. My son is not as severely affected. My heart bleeds for you. I always hurt so bad when I hear of a situation like yours. Just know I am praying for you and your dear Lucas. Colby wasn't supposed to live beyond 2 and he 12 today. When things get really tough, don't try to think ahead, just take one minute at a time. I am so sorry for your situation. I think we all will be praying for you.Love mom to Colby 12, COX IV, LCHAD, ADHD, Chad 14 healthy, Caleb 9 also healthyPlease contact mito-owner with any problems or questions.

[Guest guest]

, I would love to meet you on Wednesday. Lucas has therapy at 9:30am but when he is finished we could come to mobile. Where about are you gonna be and what time. Lucas did great with his biopsies, he went in smiling like a champ and came out smiling. He is just now started the drooling business after the fact. He always does and it gets worse as time passes. I still think in the back of my mind the anesthesia has something to do with this. Ok hope to see you soon and also hear from you soon. Thanks for all the prayers.

Love,

Kim

Tommie & Horsley wrote:

Kim,

Sending you a HUGE HUG. Lucas is so lucky to have you

for a mom. We to are continuing to pray for a miracle for Lucas. I am here for you.

Has Lucas been feeling pretty well after the biopsy? No problems?

Do you think we could meet for lunch on Wednesday the 12th in Mobile? We are coming down to get uniforms for my oldest daughter Brittney 16 and a prom dress hopefully on a great sale! We would love to meet if you and Lucas are up to it. Just email and let me know.

Love ya!

Horsley

Lucas's condition

Hello to all you wonderful people

I have a update on my boy! We went to see Dr. Shoffner and got news that my son is quiet a bit more severe than I ever realized. I wonder if there is somebody out there that has child with the similar symptoms. I'm sorry to ask such hard questions, I know that all of our children with mito are angels...but is there someone that has a child that's as close to being one as mine is....? The news that I got from Dr. Shoffner was very hard to hear. I thought that Lucas was doing ok with everything but now I have found out that Lucas is not so good. His MRI's are showing that half of the right side of his brain is effected and almost half of the left side is affected too. There is fluid collecting on both sides and his brain is shrinking. Lucas apperance is so good...so its hard to believe such bad things are going on inside. He is 3 years old (April 15th) and is a big boy..he weighs 44 pounds and is 40 inches tall. He is getting hard to carry to say the least. He is blind, and has a g-tube, not talking, walking, crawling,sitting, he is totally dependant. All this has happend over 1 year. I am having the hardest time now. It seemed as if I didnt know the severity of his condition things was a little better. Now..I am so saddend...my heart hurts and I know that all of your do to with your children...Sorry to ramble on...its gonna be a long three months. We had a muscle biopsy, skin biopsy, and spinal tap..blood work. Dr. Shoffner informed me that he wouldnt be surprized if Lucas doesnt have another major decline in his condition or if not the worst in 6 months. I'm not doing so well with this news. Any ideas....I feel so helpless to Lucas..and knowing what lies ahead for him. I thought all this time Lucas was getting a little better. I have even canceled Lucas's appoint once before with Dr. Shoffner because I thought he was better. And now..I am over whelmed in what's next and what should I do now, I am just crying out..I know I must sound nuts, which I am right now..I will stop rambling on and take a deep breath. Thanks to all of you wonderful people for answering my questions and giving me great advise. I am so thankful to all of you. God Bless all of you and your children who are suffering for this terrible mito stuff.

Love from Pensacola, Florida

[Guest guest]

Kim

I was just wondring what the latest had been and was going to write and ask

you...Randy and Sandy and I were wondering if you had learned

anything new too...

So, when did you see shoffner? Did he have an opinion on PMB (a

leukodystrophy)?

Well I think the wait is hard the first month and then you kinda get used to

it...when Marla called wednesday to tell us to expect the report in less than

two weeks I felt sick for over two hours...I would be devestated if he didn't

have any idea of a dx but I will most likely be devestated of the dx...

meanwhile, we watch our kids slip away...so hard...I got home tonight and

ju seems worse...he is soooo tired and now I wonder if it the heat or

just the progression of the disease...

I think one thing we ALLLL realized at the conference is the docs really

dont' know very much about it...there are no absolutes, no norms, no always,

no nevers..they just don't know...which makes everyones jobs harder but can

also help us all live in the hope that our child might make the recovery

that is not expected, etc...

hang in there...the waiting is hard and it seems to take forever..its hard

not to think t he worse when you are faced with the realitiy of how these

problems are affecteing our children...I think we just have to be thankful

for each day we have..

someone with a child with spina bifida, told me that she does this with her

daughter and I have started doing it with ...if your child is

non-verbal you can just cheer it to him...we say...you are going to fulfill

your destiny on this earth! That is true whether we agree with the number of

days they have or not...thier lives still counted for something...God still

had a plan for them and for us all!

Keep in touch with me...have enjoyed chatting on the phone with you...

deb

[Guest guest]

Kim

I was just wondring what the latest had been and was going to write and ask

you...Randy and Sandy and I were wondering if you had learned

anything new too...

So, when did you see shoffner? Did he have an opinion on PMB (a

leukodystrophy)?

Well I think the wait is hard the first month and then you kinda get used to

it...when Marla called wednesday to tell us to expect the report in less than

two weeks I felt sick for over two hours...I would be devestated if he didn't

have any idea of a dx but I will most likely be devestated of the dx...

meanwhile, we watch our kids slip away...so hard...I got home tonight and

ju seems worse...he is soooo tired and now I wonder if it the heat or

just the progression of the disease...

I think one thing we ALLLL realized at the conference is the docs really

dont' know very much about it...there are no absolutes, no norms, no always,

no nevers..they just don't know...which makes everyones jobs harder but can

also help us all live in the hope that our child might make the recovery

that is not expected, etc...

hang in there...the waiting is hard and it seems to take forever..its hard

not to think t he worse when you are faced with the realitiy of how these

problems are affecteing our children...I think we just have to be thankful

for each day we have..

someone with a child with spina bifida, told me that she does this with her

daughter and I have started doing it with ...if your child is

non-verbal you can just cheer it to him...we say...you are going to fulfill

your destiny on this earth! That is true whether we agree with the number of

days they have or not...thier lives still counted for something...God still

had a plan for them and for us all!

Keep in touch with me...have enjoyed chatting on the phone with you...

deb

[Guest guest]

Kim

I was just wondring what the latest had been and was going to write and ask

you...Randy and Sandy and I were wondering if you had learned

anything new too...

So, when did you see shoffner? Did he have an opinion on PMB (a

leukodystrophy)?

Well I think the wait is hard the first month and then you kinda get used to

it...when Marla called wednesday to tell us to expect the report in less than

two weeks I felt sick for over two hours...I would be devestated if he didn't

have any idea of a dx but I will most likely be devestated of the dx...

meanwhile, we watch our kids slip away...so hard...I got home tonight and

ju seems worse...he is soooo tired and now I wonder if it the heat or

just the progression of the disease...

I think one thing we ALLLL realized at the conference is the docs really

dont' know very much about it...there are no absolutes, no norms, no always,

no nevers..they just don't know...which makes everyones jobs harder but can

also help us all live in the hope that our child might make the recovery

that is not expected, etc...

hang in there...the waiting is hard and it seems to take forever..its hard

not to think t he worse when you are faced with the realitiy of how these

problems are affecteing our children...I think we just have to be thankful

for each day we have..

someone with a child with spina bifida, told me that she does this with her

daughter and I have started doing it with ...if your child is

non-verbal you can just cheer it to him...we say...you are going to fulfill

your destiny on this earth! That is true whether we agree with the number of

days they have or not...thier lives still counted for something...God still

had a plan for them and for us all!

Keep in touch with me...have enjoyed chatting on the phone with you...

deb

[Guest guest]

Thanks so much for being here! It means the world to me. It helps to know (sadenly) that there is someone that can understand.

Love from P'cola

Middpowell@... wrote: Please don't ever apoloigize about sharing feelings. That's why we are here. You are going through a very trying time. Please know that my thoughts are with you,and especially Lucas. My heart is with you.... I can't find the adequate words to comfort you. Just know We are here. God Bless You and Lucas. Robin Please contact mito-owner with any problems or questions.

[Guest guest]

I know what you mean, but I wouldn't want anyone (who wasn't at the

conference) to come away with the impression that it's all unknowns out

there.. Sure, it's still an emerging field, but there are also a lot of

promising new things! :-)

well I agree they know alot...compared to the average doc they know EVERYTHING About it...however, b/c there are no norms and standards, for the parents, unless they know your child's particular case, they really can't tell you what to expect...and I mean that in a hopeful way...

for instance...Leighs disease was one of the worse things a mito pt could be dxed with and now there are kids living to be ten with it and they are even dxing adults with it...so all that to say...there is hope b/c the things they once thought were so fatal are not usually now and such...does that make sense?

deb

[Guest guest]

I know what you mean, but I wouldn't want anyone (who wasn't at the

conference) to come away with the impression that it's all unknowns out

there.. Sure, it's still an emerging field, but there are also a lot of

promising new things! :-)

well I agree they know alot...compared to the average doc they know EVERYTHING About it...however, b/c there are no norms and standards, for the parents, unless they know your child's particular case, they really can't tell you what to expect...and I mean that in a hopeful way...

for instance...Leighs disease was one of the worse things a mito pt could be dxed with and now there are kids living to be ten with it and they are even dxing adults with it...so all that to say...there is hope b/c the things they once thought were so fatal are not usually now and such...does that make sense?

deb

[Guest guest]

kim,

i can totally relate to how you are feeling. i was so excited to go

and see dr. shoffner back in december. (we flew in from maryland)

half way through our meeting, he said " do you know what leigh disease

is? " i felt like someone just threw a brick in my face. tears

filled my eyes and i could not think of anything except of leighs

being a terminal disease.

when we left his office, we had a whole afternoon and night ahead

before the muscle bio and plane ride home--both my husband and i were

silent and walked around like zombies. it was terrible.

we are doing much better now, and we just try and enjoy every day we

have with anna grace. i try not to think of what may happen, b/c no

one really knows. anna grace's muscle biopsy results came in as a

variant of leigh disease. so, i hope that since it is not " full

blown " that her prognosis is a little better than what it could be.

anyway, my anna grace can not sit, crawl, walk, talk....etc. either.

but she is a very happy girl.

i know it is hard not to think of all the terrible things associated

with these diseases, but it really helps to focus on the " now " ....and

just enjoy every moment.

my thoughts/prayers are with lucas and you!

bethany, mom to brennan 5, palmer & anna grace (leigh's) 2 1/2

[Guest guest]

kim,

i can totally relate to how you are feeling. i was so excited to go

and see dr. shoffner back in december. (we flew in from maryland)

half way through our meeting, he said " do you know what leigh disease

is? " i felt like someone just threw a brick in my face. tears

filled my eyes and i could not think of anything except of leighs

being a terminal disease.

when we left his office, we had a whole afternoon and night ahead

before the muscle bio and plane ride home--both my husband and i were

silent and walked around like zombies. it was terrible.

we are doing much better now, and we just try and enjoy every day we

have with anna grace. i try not to think of what may happen, b/c no

one really knows. anna grace's muscle biopsy results came in as a

variant of leigh disease. so, i hope that since it is not " full

blown " that her prognosis is a little better than what it could be.

anyway, my anna grace can not sit, crawl, walk, talk....etc. either.

but she is a very happy girl.

i know it is hard not to think of all the terrible things associated

with these diseases, but it really helps to focus on the " now " ....and

just enjoy every moment.

my thoughts/prayers are with lucas and you!

bethany, mom to brennan 5, palmer & anna grace (leigh's) 2 1/2

[Guest guest]

kim,

i can totally relate to how you are feeling. i was so excited to go

and see dr. shoffner back in december. (we flew in from maryland)

half way through our meeting, he said " do you know what leigh disease

is? " i felt like someone just threw a brick in my face. tears

filled my eyes and i could not think of anything except of leighs

being a terminal disease.

when we left his office, we had a whole afternoon and night ahead

before the muscle bio and plane ride home--both my husband and i were

silent and walked around like zombies. it was terrible.

we are doing much better now, and we just try and enjoy every day we

have with anna grace. i try not to think of what may happen, b/c no

one really knows. anna grace's muscle biopsy results came in as a

variant of leigh disease. so, i hope that since it is not " full

blown " that her prognosis is a little better than what it could be.

anyway, my anna grace can not sit, crawl, walk, talk....etc. either.

but she is a very happy girl.

i know it is hard not to think of all the terrible things associated

with these diseases, but it really helps to focus on the " now " ....and

just enjoy every moment.

my thoughts/prayers are with lucas and you!

bethany, mom to brennan 5, palmer & anna grace (leigh's) 2 1/2

[Guest guest]

Bethany, thank you for the encouragement! You know how emotionally and physically worn out I am then. I'm not sure if there is an easy way to this disease. My son went from a "normal kid" to the kid who is mommy dependant in less than a years time. It's just tearing me apart. I just knew that the anesthesia was the cause of this happening to my boy and I was ready to tear this surgeons head off for messing my boy up. I am not still 100% sure if I believe that it didnt have anything to do with Lucas' condition. It seems as if everytime he had anesthesia he has gotten worse. Dr. Shoffner explained it very plainly and carefully to me and I understand the difference but..that will always be in the back of my mind because Lucas was ok until he had this surgery. Dr. Shoffner says that this was gonna happen regardless if he had surgery or not..still not totally convinced. I guess they are lucky that Lucas had a minor problem tripping and falling over his toes from the time he started walking or I would still not believe this till this day. But, Lucas did trip and fall alot when he first learned to walk. But he was walking, talking, climbing, riding his truck and jeep through everybodys flower gardens being a boy! Then this the surgery, but I ok with it now. I have been blessed with an Angel and I am so proud to have him. I keep my faith and do as much as I can with him. He likes for us to take the riding mower around the neighborhood daily. He loves the outside. I have had a rough week! But, I am gonna be ok...I will share with God! So, if he decides to take him today he can have him. God only gives these Angels to people he knows that he can trust them with! They are precious! Ok, now I have gone and made this a book again, lol. I will stop for now. Take Care and thanks so much for the encouragement!

Love always,

Kim

bethanycarol wrote: kim,i can totally relate to how you are feeling. i was so excited to go and see dr. shoffner back in december. (we flew in from maryland) half way through our meeting, he said "do you know what leigh disease is?" i felt like someone just threw a brick in my face. tears filled my eyes and i could not think of anything except of leighs being a terminal disease. when we left his office, we had a whole afternoon and night ahead before the muscle bio and plane ride home--both my husband and i were silent and walked around like zombies. it was terrible.we are doing much better now, and we just try and enjoy every day we have with anna grace. i try not to think of what may happen, b/c no one really knows. anna grace's muscle biopsy results came in as a variant of leigh disease. so, i hope that since it is not "full blown" that her prognosis is a little better than what it could be.anyway, my anna grace can not sit, crawl, walk, talk....etc. either. but she is a very happy girl.i know it is hard not to think of all the terrible things associated with these diseases, but it really helps to focus on the "now"....and just enjoy every moment.my thoughts/prayers are with lucas and you!bethany, mom to brennan 5, palmer & anna grace (leigh's) 2 1/2Please contact mito-owner with any problems or questions.

[Guest guest]

Bethany, thank you for the encouragement! You know how emotionally and physically worn out I am then. I'm not sure if there is an easy way to this disease. My son went from a "normal kid" to the kid who is mommy dependant in less than a years time. It's just tearing me apart. I just knew that the anesthesia was the cause of this happening to my boy and I was ready to tear this surgeons head off for messing my boy up. I am not still 100% sure if I believe that it didnt have anything to do with Lucas' condition. It seems as if everytime he had anesthesia he has gotten worse. Dr. Shoffner explained it very plainly and carefully to me and I understand the difference but..that will always be in the back of my mind because Lucas was ok until he had this surgery. Dr. Shoffner says that this was gonna happen regardless if he had surgery or not..still not totally convinced. I guess they are lucky that Lucas had a minor problem tripping and falling over his toes from the time he started walking or I would still not believe this till this day. But, Lucas did trip and fall alot when he first learned to walk. But he was walking, talking, climbing, riding his truck and jeep through everybodys flower gardens being a boy! Then this the surgery, but I ok with it now. I have been blessed with an Angel and I am so proud to have him. I keep my faith and do as much as I can with him. He likes for us to take the riding mower around the neighborhood daily. He loves the outside. I have had a rough week! But, I am gonna be ok...I will share with God! So, if he decides to take him today he can have him. God only gives these Angels to people he knows that he can trust them with! They are precious! Ok, now I have gone and made this a book again, lol. I will stop for now. Take Care and thanks so much for the encouragement!

Love always,

Kim

bethanycarol wrote: kim,i can totally relate to how you are feeling. i was so excited to go and see dr. shoffner back in december. (we flew in from maryland) half way through our meeting, he said "do you know what leigh disease is?" i felt like someone just threw a brick in my face. tears filled my eyes and i could not think of anything except of leighs being a terminal disease. when we left his office, we had a whole afternoon and night ahead before the muscle bio and plane ride home--both my husband and i were silent and walked around like zombies. it was terrible.we are doing much better now, and we just try and enjoy every day we have with anna grace. i try not to think of what may happen, b/c no one really knows. anna grace's muscle biopsy results came in as a variant of leigh disease. so, i hope that since it is not "full blown" that her prognosis is a little better than what it could be.anyway, my anna grace can not sit, crawl, walk, talk....etc. either. but she is a very happy girl.i know it is hard not to think of all the terrible things associated with these diseases, but it really helps to focus on the "now"....and just enjoy every moment.my thoughts/prayers are with lucas and you!bethany, mom to brennan 5, palmer & anna grace (leigh's) 2 1/2Please contact mito-owner with any problems or questions.

[Guest guest]

Dena, do you think I should leave my address for those around my area so they can contact me? I can leave another email address for them its ksbetz@... they can email me private. I will give my number and address to those I know I have seen on this site. Thanks.

Kim

waislandgirl@... wrote: << I am so thankful to all of you. God Bless all of you and your children who are suffering for this terrible mito stuff.Love from Pensacola, Florida >>My prayers are with you and Lucas. I know there are some other families in Alabama, Florida, so hopefully they will get in touch with you for some more "local" support.Hugs,DenaPlease contact mito-owner with any problems or questions.