It never fails

[Guest guest]

Wednesday morning at 4am, Bob and I woke up to the overnight nurse

knocking at our bedroom door, Matt is sick with vomiting and fever.

Cant hold anything down. Stopped his overnight g-tube feeding of

course. And Bob started making coffee. I ran to Matts side. " Here

we go again " , my son says " it never fails, Matts always sick

every Christmas " Funny i never remember that fact. And of course

that is the same morning we are suppose to go to Metobolic Clinic at

St s Hosp. Its not like i didnt see this illness coming

on, I kept him home from school on Tuesday as he was complaining of

a belly ache, but ended up fine by noon time that day. I called the

Neurology/Metobolic Clinic, and explained we would have to cancel

appointment, with Dr. Marks, and while speaking with the nurse on

the phone, I here Matts neuro Dr Melvin saying well i guess we'll

see him down in ER, I'll call ahead for you so they will be ready

for Matt. Now i havent been doing well, fighting with Keystone

Mercy to get my carnitor filled and been without it for 3 weeks, and

really feeling the effects. And on top of that woke up with

conjuctivitis the day before, I told dr Melvin lets see how this

goes, For the first time even thought Matt was vomiting every 15

minutes, there was something different, Matt was alert, temp was

99.1, and didnt look bad at all. Dr Melvin reminded us how fast

Matt crashes and dehydrates, and his glucose just drops rapidily.

How could i forget. Needless to say we started to get ready to go

to ER, my daughter Jes was sitting with Matt, while we got ready ,

when i went back to his room, he was sitting up laughing and

throwing toys at Jes, Thank God was all i could say, and then i came

to my senses and reminded Jes not to get Matt to excited as he still

had a fever, finally sat had a cup of coffee, called Clinic back and

told them we werent coming, Dr Melvin said to start hydrating him

and i said got the pedialite ready as we are speaking and he say NO,

No NO, get Gatoraid in him, i want Matt to have as much sugar as

possible. We never heard that from him before. But then again Matt

usually got glucose via IV along with Potasium, Saline drip. So i

guess it really did make sense. And they had already re-scheduled

Matts appointment for following week. And found a grant so Matt can

have a blood biopsy (they are looking for mutation, Matt was thought

to have MERFF when first diagnosed, and now with a bit of regression

and migrain headaches, new blood work, and old and new MRI findings

in white and gray matter believe this to be MELAS), of course

Keystone Mercy dont want to pay for a expensive blood test, but are

willing to pay for another muscle biopsy, hospital stay, Pt

afterwards. I have just about have had it with Keystone Mercy. But

with Matt getting as well as he did so fast, news of a grant (not

sure if its partial or full still have to deal with that paper work

next week at Clinic), I'd say my Christmas wishes have already been

granted. Please keep Matt in your prayers, he is still regressing

mentally and physically, (slowly Thank God) but nonetheless enough

for the specialist to jump through hoops to help him, and to find

mtdna as my biopsy didnt show the mtdna, just red ragged fibers,

like Matts biopsy. Matts last blood work up showed disturbing

levels and with proper treatments they can stave off some of the

improper balances going on. And get him on the right cocktail,

since what hes been on is no longer working. Sorry for the lenghty

note, but like my son says It never fails, i agree when things

start looking bad it never fails, my faith just becomes stronger,

prayers do sometimes get answered. Keep up the faith everyone and

have a Very Happy HOlIDAY!! Barb

[Guest guest]

Wednesday morning at 4am, Bob and I woke up to the overnight nurse

knocking at our bedroom door, Matt is sick with vomiting and fever.

Cant hold anything down. Stopped his overnight g-tube feeding of

course. And Bob started making coffee. I ran to Matts side. " Here

we go again " , my son says " it never fails, Matts always sick

every Christmas " Funny i never remember that fact. And of course

that is the same morning we are suppose to go to Metobolic Clinic at

St s Hosp. Its not like i didnt see this illness coming

on, I kept him home from school on Tuesday as he was complaining of

a belly ache, but ended up fine by noon time that day. I called the

Neurology/Metobolic Clinic, and explained we would have to cancel

appointment, with Dr. Marks, and while speaking with the nurse on

the phone, I here Matts neuro Dr Melvin saying well i guess we'll

see him down in ER, I'll call ahead for you so they will be ready

for Matt. Now i havent been doing well, fighting with Keystone

Mercy to get my carnitor filled and been without it for 3 weeks, and

really feeling the effects. And on top of that woke up with

conjuctivitis the day before, I told dr Melvin lets see how this

goes, For the first time even thought Matt was vomiting every 15

minutes, there was something different, Matt was alert, temp was

99.1, and didnt look bad at all. Dr Melvin reminded us how fast

Matt crashes and dehydrates, and his glucose just drops rapidily.

How could i forget. Needless to say we started to get ready to go

to ER, my daughter Jes was sitting with Matt, while we got ready ,

when i went back to his room, he was sitting up laughing and

throwing toys at Jes, Thank God was all i could say, and then i came

to my senses and reminded Jes not to get Matt to excited as he still

had a fever, finally sat had a cup of coffee, called Clinic back and

told them we werent coming, Dr Melvin said to start hydrating him

and i said got the pedialite ready as we are speaking and he say NO,

No NO, get Gatoraid in him, i want Matt to have as much sugar as

possible. We never heard that from him before. But then again Matt

usually got glucose via IV along with Potasium, Saline drip. So i

guess it really did make sense. And they had already re-scheduled

Matts appointment for following week. And found a grant so Matt can

have a blood biopsy (they are looking for mutation, Matt was thought

to have MERFF when first diagnosed, and now with a bit of regression

and migrain headaches, new blood work, and old and new MRI findings

in white and gray matter believe this to be MELAS), of course

Keystone Mercy dont want to pay for a expensive blood test, but are

willing to pay for another muscle biopsy, hospital stay, Pt

afterwards. I have just about have had it with Keystone Mercy. But

with Matt getting as well as he did so fast, news of a grant (not

sure if its partial or full still have to deal with that paper work

next week at Clinic), I'd say my Christmas wishes have already been

granted. Please keep Matt in your prayers, he is still regressing

mentally and physically, (slowly Thank God) but nonetheless enough

for the specialist to jump through hoops to help him, and to find

mtdna as my biopsy didnt show the mtdna, just red ragged fibers,

like Matts biopsy. Matts last blood work up showed disturbing

levels and with proper treatments they can stave off some of the

improper balances going on. And get him on the right cocktail,

since what hes been on is no longer working. Sorry for the lenghty

note, but like my son says It never fails, i agree when things

start looking bad it never fails, my faith just becomes stronger,

prayers do sometimes get answered. Keep up the faith everyone and

have a Very Happy HOlIDAY!! Barb

[Guest guest]

I'm glad things are looking up.

Our metabolic doctor also switched us to Gatorade in March when my son

ended up in the hospital. It really does do the trick.

Sue Ann Bube

It never fails

Wednesday morning at 4am, Bob and I woke up to the overnight nurse

knocking at our bedroom door, Matt is sick with vomiting and fever.

Cant hold anything down. Stopped his overnight g-tube feeding of

course. And Bob started making coffee. I ran to Matts side. " Here

we go again " , my son says " it never fails, Matts always sick

every Christmas " Funny i never remember that fact. And of course

that is the same morning we are suppose to go to Metobolic Clinic at

St s Hosp. Its not like i didnt see this illness coming

on, I kept him home from school on Tuesday as he was complaining of

a belly ache, but ended up fine by noon time that day. I called the

Neurology/Metobolic Clinic, and explained we would have to cancel

appointment, with Dr. Marks, and while speaking with the nurse on

the phone, I here Matts neuro Dr Melvin saying well i guess we'll

see him down in ER, I'll call ahead for you so they will be ready

for Matt. Now i havent been doing well, fighting with Keystone

Mercy to get my carnitor filled and been without it for 3 weeks, and

really feeling the effects. And on top of that woke up with

conjuctivitis the day before, I told dr Melvin lets see how this

goes, For the first time even thought Matt was vomiting every 15

minutes, there was something different, Matt was alert, temp was

99.1, and didnt look bad at all. Dr Melvin reminded us how fast

Matt crashes and dehydrates, and his glucose just drops rapidily.

How could i forget. Needless to say we started to get ready to go

to ER, my daughter Jes was sitting with Matt, while we got ready ,

when i went back to his room, he was sitting up laughing and

throwing toys at Jes, Thank God was all i could say, and then i came

to my senses and reminded Jes not to get Matt to excited as he still

had a fever, finally sat had a cup of coffee, called Clinic back and

told them we werent coming, Dr Melvin said to start hydrating him

and i said got the pedialite ready as we are speaking and he say NO,

No NO, get Gatoraid in him, i want Matt to have as much sugar as

possible. We never heard that from him before. But then again Matt

usually got glucose via IV along with Potasium, Saline drip. So i

guess it really did make sense. And they had already re-scheduled

Matts appointment for following week. And found a grant so Matt can

have a blood biopsy (they are looking for mutation, Matt was thought

to have MERFF when first diagnosed, and now with a bit of regression

and migrain headaches, new blood work, and old and new MRI findings

in white and gray matter believe this to be MELAS), of course

Keystone Mercy dont want to pay for a expensive blood test, but are

willing to pay for another muscle biopsy, hospital stay, Pt

afterwards. I have just about have had it with Keystone Mercy. But

with Matt getting as well as he did so fast, news of a grant (not

sure if its partial or full still have to deal with that paper work

next week at Clinic), I'd say my Christmas wishes have already been

granted. Please keep Matt in your prayers, he is still regressing

mentally and physically, (slowly Thank God) but nonetheless enough

for the specialist to jump through hoops to help him, and to find

mtdna as my biopsy didnt show the mtdna, just red ragged fibers,

like Matts biopsy. Matts last blood work up showed disturbing

levels and with proper treatments they can stave off some of the

improper balances going on. And get him on the right cocktail,

since what hes been on is no longer working. Sorry for the lenghty

note, but like my son says It never fails, i agree when things

start looking bad it never fails, my faith just becomes stronger,

prayers do sometimes get answered. Keep up the faith everyone and

have a Very Happy HOlIDAY!! Barb

Please contact mito-owner with any problems or

questions.

[Guest guest]

I'm glad things are looking up.

Our metabolic doctor also switched us to Gatorade in March when my son

ended up in the hospital. It really does do the trick.

Sue Ann Bube

It never fails

Wednesday morning at 4am, Bob and I woke up to the overnight nurse

knocking at our bedroom door, Matt is sick with vomiting and fever.

Cant hold anything down. Stopped his overnight g-tube feeding of

course. And Bob started making coffee. I ran to Matts side. " Here

we go again " , my son says " it never fails, Matts always sick

every Christmas " Funny i never remember that fact. And of course

that is the same morning we are suppose to go to Metobolic Clinic at

St s Hosp. Its not like i didnt see this illness coming

on, I kept him home from school on Tuesday as he was complaining of

a belly ache, but ended up fine by noon time that day. I called the

Neurology/Metobolic Clinic, and explained we would have to cancel

appointment, with Dr. Marks, and while speaking with the nurse on

the phone, I here Matts neuro Dr Melvin saying well i guess we'll

see him down in ER, I'll call ahead for you so they will be ready

for Matt. Now i havent been doing well, fighting with Keystone

Mercy to get my carnitor filled and been without it for 3 weeks, and

really feeling the effects. And on top of that woke up with

conjuctivitis the day before, I told dr Melvin lets see how this

goes, For the first time even thought Matt was vomiting every 15

minutes, there was something different, Matt was alert, temp was

99.1, and didnt look bad at all. Dr Melvin reminded us how fast

Matt crashes and dehydrates, and his glucose just drops rapidily.

How could i forget. Needless to say we started to get ready to go

to ER, my daughter Jes was sitting with Matt, while we got ready ,

when i went back to his room, he was sitting up laughing and

throwing toys at Jes, Thank God was all i could say, and then i came

to my senses and reminded Jes not to get Matt to excited as he still

had a fever, finally sat had a cup of coffee, called Clinic back and

told them we werent coming, Dr Melvin said to start hydrating him

and i said got the pedialite ready as we are speaking and he say NO,

No NO, get Gatoraid in him, i want Matt to have as much sugar as

possible. We never heard that from him before. But then again Matt

usually got glucose via IV along with Potasium, Saline drip. So i

guess it really did make sense. And they had already re-scheduled

Matts appointment for following week. And found a grant so Matt can

have a blood biopsy (they are looking for mutation, Matt was thought

to have MERFF when first diagnosed, and now with a bit of regression

and migrain headaches, new blood work, and old and new MRI findings

in white and gray matter believe this to be MELAS), of course

Keystone Mercy dont want to pay for a expensive blood test, but are

willing to pay for another muscle biopsy, hospital stay, Pt

afterwards. I have just about have had it with Keystone Mercy. But

with Matt getting as well as he did so fast, news of a grant (not

sure if its partial or full still have to deal with that paper work

next week at Clinic), I'd say my Christmas wishes have already been

granted. Please keep Matt in your prayers, he is still regressing

mentally and physically, (slowly Thank God) but nonetheless enough

for the specialist to jump through hoops to help him, and to find

mtdna as my biopsy didnt show the mtdna, just red ragged fibers,

like Matts biopsy. Matts last blood work up showed disturbing

levels and with proper treatments they can stave off some of the

improper balances going on. And get him on the right cocktail,

since what hes been on is no longer working. Sorry for the lenghty

note, but like my son says It never fails, i agree when things

start looking bad it never fails, my faith just becomes stronger,

prayers do sometimes get answered. Keep up the faith everyone and

have a Very Happy HOlIDAY!! Barb

Please contact mito-owner with any problems or

questions.

[Guest guest]

I am sorry to hear he is under the weather. I will tell Leah and Isaac as

they tend to be the ones that write online to him in the Mitosibsandkids

group. They will be saddened to hear he has been unwell. Hope the Gateraid

helps. Zipporrah is also battling something and has been keeping me up the

last few nights. Her head is pretty clogged and that leads to retching for

her. I have been hearing Asenath cough as well so I am hoping they can get

through this newest viral attack ok. I am glad to hear you are keeping

cheerful through this and doing ok under the circumstances. Merry

Christmas to you and your whole family!

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)

It never fails

>

>

> Wednesday morning at 4am, Bob and I woke up to the overnight nurse

> knocking at our bedroom door, Matt is sick with vomiting and fever.

> Cant hold anything down. Stopped his overnight g-tube feeding of

> course. And Bob started making coffee. I ran to Matts side. " Here

> we go again " , my son says " it never fails, Matts always sick

> every Christmas " Funny i never remember that fact. And of course

> that is the same morning we are suppose to go to Metobolic Clinic at

> St s Hosp. Its not like i didnt see this illness coming

> on, I kept him home from school on Tuesday as he was complaining of

> a belly ache, but ended up fine by noon time that day. I called the

> Neurology/Metobolic Clinic, and explained we would have to cancel

> appointment, with Dr. Marks, and while speaking with the nurse on

> the phone, I here Matts neuro Dr Melvin saying well i guess we'll

> see him down in ER, I'll call ahead for you so they will be ready

> for Matt. Now i havent been doing well, fighting with Keystone

> Mercy to get my carnitor filled and been without it for 3 weeks, and

> really feeling the effects. And on top of that woke up with

> conjuctivitis the day before, I told dr Melvin lets see how this

> goes, For the first time even thought Matt was vomiting every 15

> minutes, there was something different, Matt was alert, temp was

> 99.1, and didnt look bad at all. Dr Melvin reminded us how fast

> Matt crashes and dehydrates, and his glucose just drops rapidily.

> How could i forget. Needless to say we started to get ready to go

> to ER, my daughter Jes was sitting with Matt, while we got ready ,

> when i went back to his room, he was sitting up laughing and

> throwing toys at Jes, Thank God was all i could say, and then i came

> to my senses and reminded Jes not to get Matt to excited as he still

> had a fever, finally sat had a cup of coffee, called Clinic back and

> told them we werent coming, Dr Melvin said to start hydrating him

> and i said got the pedialite ready as we are speaking and he say NO,

> No NO, get Gatoraid in him, i want Matt to have as much sugar as

> possible. We never heard that from him before. But then again Matt

> usually got glucose via IV along with Potasium, Saline drip. So i

> guess it really did make sense. And they had already re-scheduled

> Matts appointment for following week. And found a grant so Matt can

> have a blood biopsy (they are looking for mutation, Matt was thought

> to have MERFF when first diagnosed, and now with a bit of regression

> and migrain headaches, new blood work, and old and new MRI findings

> in white and gray matter believe this to be MELAS), of course

> Keystone Mercy dont want to pay for a expensive blood test, but are

> willing to pay for another muscle biopsy, hospital stay, Pt

> afterwards. I have just about have had it with Keystone Mercy. But

> with Matt getting as well as he did so fast, news of a grant (not

> sure if its partial or full still have to deal with that paper work

> next week at Clinic), I'd say my Christmas wishes have already been

> granted. Please keep Matt in your prayers, he is still regressing

> mentally and physically, (slowly Thank God) but nonetheless enough

> for the specialist to jump through hoops to help him, and to find

> mtdna as my biopsy didnt show the mtdna, just red ragged fibers,

> like Matts biopsy. Matts last blood work up showed disturbing

> levels and with proper treatments they can stave off some of the

> improper balances going on. And get him on the right cocktail,

> since what hes been on is no longer working. Sorry for the lenghty

> note, but like my son says It never fails, i agree when things

> start looking bad it never fails, my faith just becomes stronger,

> prayers do sometimes get answered. Keep up the faith everyone and

> have a Very Happy HOlIDAY!! Barb

>

>

>

>

>

>

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

>

[Guest guest]

I am sorry to hear he is under the weather. I will tell Leah and Isaac as

they tend to be the ones that write online to him in the Mitosibsandkids

group. They will be saddened to hear he has been unwell. Hope the Gateraid

helps. Zipporrah is also battling something and has been keeping me up the

last few nights. Her head is pretty clogged and that leads to retching for

her. I have been hearing Asenath cough as well so I am hoping they can get

through this newest viral attack ok. I am glad to hear you are keeping

cheerful through this and doing ok under the circumstances. Merry

Christmas to you and your whole family!

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)

It never fails

>

>

> Wednesday morning at 4am, Bob and I woke up to the overnight nurse

> knocking at our bedroom door, Matt is sick with vomiting and fever.

> Cant hold anything down. Stopped his overnight g-tube feeding of

> course. And Bob started making coffee. I ran to Matts side. " Here

> we go again " , my son says " it never fails, Matts always sick

> every Christmas " Funny i never remember that fact. And of course

> that is the same morning we are suppose to go to Metobolic Clinic at

> St s Hosp. Its not like i didnt see this illness coming

> on, I kept him home from school on Tuesday as he was complaining of

> a belly ache, but ended up fine by noon time that day. I called the

> Neurology/Metobolic Clinic, and explained we would have to cancel

> appointment, with Dr. Marks, and while speaking with the nurse on

> the phone, I here Matts neuro Dr Melvin saying well i guess we'll

> see him down in ER, I'll call ahead for you so they will be ready

> for Matt. Now i havent been doing well, fighting with Keystone

> Mercy to get my carnitor filled and been without it for 3 weeks, and

> really feeling the effects. And on top of that woke up with

> conjuctivitis the day before, I told dr Melvin lets see how this

> goes, For the first time even thought Matt was vomiting every 15

> minutes, there was something different, Matt was alert, temp was

> 99.1, and didnt look bad at all. Dr Melvin reminded us how fast

> Matt crashes and dehydrates, and his glucose just drops rapidily.

> How could i forget. Needless to say we started to get ready to go

> to ER, my daughter Jes was sitting with Matt, while we got ready ,

> when i went back to his room, he was sitting up laughing and

> throwing toys at Jes, Thank God was all i could say, and then i came

> to my senses and reminded Jes not to get Matt to excited as he still

> had a fever, finally sat had a cup of coffee, called Clinic back and

> told them we werent coming, Dr Melvin said to start hydrating him

> and i said got the pedialite ready as we are speaking and he say NO,

> No NO, get Gatoraid in him, i want Matt to have as much sugar as

> possible. We never heard that from him before. But then again Matt

> usually got glucose via IV along with Potasium, Saline drip. So i

> guess it really did make sense. And they had already re-scheduled

> Matts appointment for following week. And found a grant so Matt can

> have a blood biopsy (they are looking for mutation, Matt was thought

> to have MERFF when first diagnosed, and now with a bit of regression

> and migrain headaches, new blood work, and old and new MRI findings

> in white and gray matter believe this to be MELAS), of course

> Keystone Mercy dont want to pay for a expensive blood test, but are

> willing to pay for another muscle biopsy, hospital stay, Pt

> afterwards. I have just about have had it with Keystone Mercy. But

> with Matt getting as well as he did so fast, news of a grant (not

> sure if its partial or full still have to deal with that paper work

> next week at Clinic), I'd say my Christmas wishes have already been

> granted. Please keep Matt in your prayers, he is still regressing

> mentally and physically, (slowly Thank God) but nonetheless enough

> for the specialist to jump through hoops to help him, and to find

> mtdna as my biopsy didnt show the mtdna, just red ragged fibers,

> like Matts biopsy. Matts last blood work up showed disturbing

> levels and with proper treatments they can stave off some of the

> improper balances going on. And get him on the right cocktail,

> since what hes been on is no longer working. Sorry for the lenghty

> note, but like my son says It never fails, i agree when things

> start looking bad it never fails, my faith just becomes stronger,

> prayers do sometimes get answered. Keep up the faith everyone and

> have a Very Happy HOlIDAY!! Barb

>

>

>

>

>

>

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

>