Ruth

[Guest guest]

I appreciated hearing more about your kids. I am sorry it has been a

hard time with the schools dealing with your son's issues. Thanks for

sharing with all of us even though I know you were welcoming a newcomer, it

was helpful for me too.

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: just getting started with all of this

> HI Mandy,

>

> WElcome to our group and on the other hand i'm sorry of the circumstances

> that have brought you here. Sounds like you've got two beautiful girls to

> be

> proud of.

>

> I'm a mito mom to two kids, Mitch (9 1/2) and Lexi (6 1/2). Mitch was

> developing normally until the age of 6 1/2, and in the last 3 years we

> have been

> learning more about the very different ways that mito can show up in a

> child.

>

> Lexi started showing problems at 4 hrs old. She had difficulty breathing

> on

> her own, slow heart rate, apnea, turning blue, reflux, cyclical

> constipation,

> feeding difficulties, failure to thrive, poor weight gain, and over the

> years

> has also had difficulty with being unable to urinate (sometimes will go up

> to

> 3 days without being able to pee), atypical seizures (hers show up as

> hiccups,

> go figure), and still difficulty with turning blue with stress, heat,

> fatigue, etc. Having said all that, she is also normal cognition, walks

> and talks,

> and for the most part people who see her have no clue what we've been

> through.

> The first year of her life, we were frequently told not to expect her to

> live. She has been in the hospital 30 times. But yet she's still here

> and she's

> quite a scrapper.

>

> Mitch as i said earlier was my " normal " kiddo...healthy as a horse, never

> even went to the doctor until he was 18 months old, talked in sentences at

> 12

> months old (speech therapist's kid, what can i tell you? lol), and was

> just

> doing great...until we hit school. Then we started to see little things,

> like

> trouble with handwriting and a bit of a late reader. He couldn't ride a

> bike

> when all the neighbor kids could, wasn't a fast runner, etc. But his

> language

> skills were so advanced i sort of just overlooked alot of little symptoms.

> Then

> at 6 1/2, his first grade teacher told me he was having significant

> difficulty focusing in class. I called the doc, we thought maybe ADHD,

> tried meds but

> they didn't help. Then his gross motor skills started to deteriorate. He

> wasn't able to do his beloved tae kwon do which he had done since the age

> of 4

> and by 7 1/2 i had to admit there was a serious problem. We started

> private PT

> and OT and finally started to see some gains with gross motor skills. The

> schools meanwhile said they wouldn't help him, bc his language was so high

> that

> he didn't qualify for special ed. Each year has been worse than the year

> beofre, while i watch my son struggle with a growing moutnain of homework

> that he

> will never be able to keep up with and demands placed on him that he is

> just

> incapable of meeting. Last year he started falling asleep in class and

> the

> motor skills got worse. We got a tentative Dx of muscular

> dystrophy...still the

> schools wouldn't help him. They did put him on a 504 plan, but no OT or

> PT

> offered at school. This year we saw the mito specialist. he wasn't even

> sure

> it was mito, said if it was, it was mild and/or at the beginning stages.

> So

> there was no medical help. And he is still struggling to keep up, still

> falls

> asleep in class, and still feels like a failure for needing any kind of

> modifications (which he won't use in class, bc it " embarrasses " him).

> Meds for both kids have included the vitamin cocktail , and Lexi also

> takes

> Bicitra to keep her out of lactic acidosis. We have seen marginal

> results.

>

> Anyway, that is our story in a nutshell. Hope it helps somewhat to know

> that

> you may be in an ugly boat, but we're all rowing with you.

>

> ruth

> mito mom to Mitch and Lexi, both mito affected and my treasures

>

[Guest guest]

PLEASE SEND BACK YOU WILL UNDERSTAND WHYRuth went to her mail box and there was only one letter. She picked it up and looked at it before opening, but then she looked at the envelope again. There was no stamp, no postmark, only her name and address. She read the letter: Dear Ruth: I`m going to be in your neighborhood Saturdayafternoon and I'd like to stop by for a visit. Love Always, Jesus Her hands were shaking as she placed the letter on the table. 'Why would the Lord want to visit me? I'm nobody special. I don't have anything to offer.' With that thought, Ruth remembered her empty kitchen cabinets. 'Oh my goodness, I really don't have anything to offer. I'll have to run down to the store and buy something for dinner.' She reached for her purse and counted out its contents. Five dollars and forty cents. Well, I can get some bread and cold cuts, at least.' She threw on her coat and hurried out the door. A loaf of French bread, a half-pound of sliced turkey, and a carton of milk...leaving Ruth with grand total twelve cents to last her until Monday. Nonetheless, she felt good as she headed home, her meager offerings tucked under her arm. 'Hey lady, can you help us,lady?' Ruth had been so absorbed in her dinner plans, she hadn't even noticed two figures huddled in the alleyway. A man and a woman, both of them dressed in little more than rags. 'Look lady, I ain't got a job, ya know, and my wife and I have been living out here on the street, and, well, now it's getting cold and we're getting kinda hungry and, well, if you could help us. Lady, we'd really appreciate it.' Ruth looked at them both. They were dirty, they smelled bad and frankly, she was certain that they could get some kind of work if they really wanted to. 'Sir, I'd like to help you, but I'm a poor woman myself. All I have is a few cold cuts and some bread, and I'm having an important guest for dinner tonight and I was planning on serving that to Him.' 'Yeah, well, okay lady, I understand. Thanks anyway.' The man put his arm around the woman'sshoulders, turned and headed back into the alley. As she watched them leave, Ruth felt a familiar twinge in her heart. 'Sir, wait!' The couple stopped and turned as she ran down the alley after them. 'Look, why don't you take this food. I'll figure out something else to serve my guest.' She handed the man her grocery bag. 'Thank you lady. Thank you very much!' 'Yes, thank you!' It was the man's wife, and Ruth could see now that she was shivering 'You know, I've got another coat at home. Here, why don't you take this one.' Ruth unbuttoned her jacket and slipped it over the woman's shoulders. Then smiling, she turned and walked back to the street...without her coat and with nothing to serve her guest. 'Thank you lady! Thank you very much!' Ruth was chilled by the time she reached her front door, and worried too. The Lordwas coming to visit and she didn't have anything to offer Him. She fumbled through her purse for the door key. But as she did, she noticed another envelope in her mailbox. 'That's odd. The mailman doesn't usually come twice in one day.' Dear Ruth: It was so good to see you again. Thank you for the lovely meal. And thank you, too, for the beautiful coat. Love Always, Jesus The air was still cold, but even without her coat, Ruth no longer noticed. If you love Jesus, send this to ten people Do not keep this message. The mantra must leave your hands within 96 hours. You will get a very pleasant surprise. This is true, even if you are not superstitious. good things will happen to everyone that touches this story

Never miss a thing. Make Yahoo your homepage. See AOL's top rated recipes and easy ways to stay in shape for winter.

[Guest guest]

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of anewronald@...

Sent: Friday, December 21, 2007

11:41 PM

To: olehomepla@...

Cc: Neurosarcoidosis

Subject: Fwd:

Ruth

PLEASE SEND BACK YOU WILL UNDERSTAND WHY

Ruth went to her mail box and there was only one letter.

She picked it up and looked at it before opening, but

then she looked at the envelope again.

There was no stamp, no postmark, only her name and

address.

She read the letter:

Dear Ruth:

I`m going to be in your neighborhood Saturday

afternoon and I'd like to stop by for a visit.

Love Always,

Jesus

Her hands were shaking as she placed the letter on

the table. 'Why would the Lord want to visit me?

I'm nobody special. I don't have anything to offer.'

With that thought, Ruth remembered her empty

kitchen cabinets.

'Oh my goodness, I really don't have anything to

offer. I'll have to run down to the store and buy something for dinner.'

She reached for her purse and counted out its

contents. Five dollars and forty cents.

Well, I can get some bread and cold cuts, at least.'

She threw on her coat and hurried out the door.

A loaf of French bread, a half-pound of sliced turkey, and a carton of

milk...leaving Ruth with grand total twelve cents to last her until Monday.

Nonetheless, she felt good as she headed home, her

meager offerings tucked under her arm.

'Hey lady, can you help us,lady?'

Ruth had been so absorbed in her dinner plans, she

hadn't even noticed two figures huddled in the

alleyway.

A man and a woman, both of them dressed in little more than rags.

'Look lady, I ain't got a job, ya know, and my wife

and I have been living out here on the street, and,

well, now it's getting cold and we're getting kinda

hungry and, well, if you could help us. Lady, we'd

really appreciate it.'

Ruth looked at them both.

They were dirty, they smelled bad and frankly, she

was certain that they could get some kind of work if

they really wanted to.

'Sir, I'd like to help you, but I'm a poor woman

myself. All I have is a few cold cuts and some bread, and I'm having an

important guest for dinner tonight and I was planning on serving that to Him.'

'Yeah, well, okay lady, I understand. Thanks anyway.'

The man put his arm around the woman's

shoulders, turned and headed back into the alley.

As she watched them leave, Ruth felt a familiar

twinge in her heart.

'Sir, wait!'

The couple stopped and turned as she ran down the alley after them.

'Look, why don't you take this food. I'll figure out something else to serve my

guest.'

She handed the man her grocery bag.

'Thank you lady. Thank you very much!'

'Yes, thank you!' It was the man's wife, and Ruth

could see now that she was shivering

'You know, I've got another coat at home.

Here, why don't you take this one.'

Ruth unbuttoned her jacket and slipped it over the

woman's shoulders.

Then smiling, she turned and walked back to the street...without her coat and

with nothing to serve

her guest.

'Thank you lady!

Thank you very much!'

Ruth was chilled by the time she reached her front

door, and worried too.

The Lord

was coming to visit and she didn't have anything to offer Him.

She fumbled through her purse for the door key. But

as she did, she noticed another envelope in her

mailbox.

'That's odd. The mailman doesn't usually come twice

in one day.'

Dear Ruth:

It was so good to see you again.

Thank you for the lovely meal.

And thank you, too, for the beautiful coat.

Love Always,

Jesus

The air was still cold, but even without her coat, Ruth no longer noticed.

If you love Jesus, send this to ten people Do not keep this message.

The mantra must leave your hands within 96 hours.

You will get a very pleasant surprise.

This is true, even if you are not superstitious.

good things will happen to everyone that

touches this story

Never miss a thing. Make Yahoo

your homepage.

See AOL's top

rated recipes and easy

ways to stay in shape for winter.

[Guest guest]

Beautiful.Blessings,Beckyanewronald@... wrote: PLEASE SEND BACK YOU WILL UNDERSTAND WHYRuth went to her mail box and there was only one

letter. She picked it up and looked at it before opening, but then she looked at the envelope again. There was no stamp, no postmark, only her name and address. She read the letter: Dear Ruth: I`m going to be in your neighborhood Saturdayafternoon and I'd like to stop by for a visit. Love Always, Jesus Her hands were shaking as she placed the letter on the table. 'Why would the Lord want to visit me? I'm nobody special. I don't have anything to offer.' With that thought, Ruth remembered her empty kitchen cabinets. 'Oh my goodness, I really don't have anything to offer. I'll have to run down to the store and buy something for dinner.' She reached for her purse and counted out its contents. Five dollars and forty cents. Well, I can get some bread and cold cuts, at least.' She threw on her coat and hurried out the door. A loaf of French bread, a half-pound of sliced turkey, and a carton of milk...leaving Ruth with grand total twelve cents to last her until Monday. Nonetheless, she felt good as she headed home, her meager offerings tucked under her arm. 'Hey lady, can you help us,lady?' Ruth had been so absorbed in her dinner plans, she hadn't even noticed two figures huddled in the alleyway. A man and a woman, both of them dressed in little more than rags. 'Look lady, I ain't got a job, ya know, and my wife and I have been living out here on the street, and, well, now it's getting cold and we're getting kinda hungry and, well, if you could help us. Lady, we'd really appreciate it.' Ruth looked at them both. They were dirty, they smelled bad and frankly, she was certain that they could get some kind of work if they really wanted to. 'Sir, I'd like to help you, but I'm a poor woman

myself. All I have is a few cold cuts and some bread, and I'm having an important guest for dinner tonight and I was planning on serving that to Him.' 'Yeah, well, okay lady, I understand. Thanks anyway.' The man put his arm around the woman'sshoulders, turned and headed back into the alley. As she watched them leave, Ruth felt a familiar twinge in her heart. 'Sir, wait!' The couple stopped and turned as she ran down the alley after them. 'Look, why don't you take this food. I'll figure out something else to serve my guest.' She handed the man her grocery bag. 'Thank you lady. Thank you very much!' 'Yes, thank you!' It was the man's wife, and Ruth could see now that she was shivering 'You know, I've got another coat at home. Here, why don't you take this one.' Ruth unbuttoned her jacket and slipped it over the woman's shoulders. Then

smiling, she turned and walked back to the street...without her coat and with nothing to serve her guest. 'Thank you lady! Thank you very much!' Ruth was chilled by the time she reached her front door, and worried too. The Lordwas coming to visit and she didn't have anything to offer Him. She fumbled through her purse for the door key. But as she did, she noticed another envelope in her mailbox. 'That's odd. The mailman doesn't usually come twice in one day.' Dear Ruth: It was so good to see you again. Thank you for the lovely meal. And thank you, too, for the beautiful coat. Love Always, Jesus The air was still cold, but even without her coat, Ruth no longer noticed. If you love Jesus, send this to ten people Do not keep this message. The mantra must leave your hands within 96 hours. You will get a very pleasant

surprise. This is true, even if you are not superstitious. good things will happen to everyone that touches this story Never miss a thing. Make Yahoo your homepage. See AOL's top rated recipes and easy ways to stay in shape for winter.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Happy Birthday Ruth and many more.

Terri G.

[Guest guest]

Happy Birthday Ruth and many more.

Terri G.