RE: Re:Bronc Scope??

[Guest guest]

In a message dated 5/20/02 9:44:17 PM !!!First Boot!!!, bvarney123@...

writes:

> Kristi ,

> Sorry to hear you had that done. That does not sound to exciting.

> I would hate the thought of them doing that to my little boy. How old were

> you?

> Do you know how many times you have been hospitalized?

> Matt has been in 2 times and he will be 5 in Aug. I am just curious?

>

> Take care, Gosh hope you dont have to have one of those again.

> I guess it could have been worse.

> Good luck,Take care Matts mom, Steph

[Guest guest]

Kristi,

Well your name will be easy to remember.I have a sister named kristi,

Anyways Matt has never rolled over, crawled or walked. He was diagnosed at 12

months of age.He got his electric chair when he 2.

Gees that month in the hospital was probably a drag.I take it that the bronc

scope isnt to new of a thing. I couldnt emagine living at the hospital for

that long of a time.

Do you have brothers and sisters?

Do you have the ABI vest or IN-EX? Matt has them both.

I LOVE the ABI vest it is the BOMB!!!! I would take the ABI vest over the

IN-EX any day......

He does not use a bipap,and is not trached. He is very very weak though.

I am thinking of homeschooling because of him being so weak respitory wise.

I dont know!! Did you go to school? probably huh? I am the only crazy mom

out there who wants to do this.

Well I have to go and visit 2 friends in the hospital.Both SMA " s.Type 1 & 2

Where do you live? Do you know anybody close to Spokane WA with SMA?

We are about 6-7 hrs East of Seattle WA.

Take care and nice talking to you.Steph Matts Mom :)

Picture of matt,Send me a pic if you want....

[Guest guest]

In a message dated 5/20/2002 5:06:32 PM Pacific Standard Time,

bvarney123@... writes:

> Do you know anybody close to Spokane WA with SMA?

I'm in the Everettish part of WA. Not too close to Spokane, but the same

state. And I'm 17 with SMA II.

I must say I'm not a big fan of homeschooling. Not unless it's absolutely

necessary. As much as I hate school sometimes (16 days left!! =), I certainly

don't regret going. Most of what you learn in school isn't in the textbooks.

Not to say that homeschooling isn't right for some people, but I don't think

it's best for most.

Matt really had an electric chair at 2? I didn't get one until I was 6! I

used a manual up until then.

~e~

[Guest guest]

In a message dated 5/20/2002 5:58:49 PM Pacific Standard Time,

lynnie53@... writes:

> I bet your wondering if my trach was 2nd best, what's 1st? Well, many of

> you know going pee is an important thing during the day, and it's SOO

> hard to do transfers out and about, and I use the hoyer for transfers so

> basically I have to hold it all day long at work, the mall wherever.

> Until I had this new procedure done called a Mitrophnoff. It's where the

> doc's take your appendex and make a canal from your belly button to your

> bladder. In my case the appendex was junk so they used my intestine. It's

> NOT a super pubic, there are no tubes attached and all you gotta do is

> stik a cath. in your bbutton when ya gotta go, wheel up to the toilet,

> go, take it out & your on your way! It's awesome! I have severe colds

> often and thanks be to Jesus I only was laid up one week.

Is it really that easy?? You can do it all yourself? It sounds so great,

there must be a catch somewhere. Is it risky? I'm really curious now, that

could make my life soooo much easier....

~e~

[Guest guest]

My two cents if it's worth anything...

I grew up very sick, always in & out of the hospital my whole childhood.

My mom would always be " pounding " on me trying to get the guk up. When I

was 12 my mom was declared an 'un-fit' mother due to alcholism and I went

to live at my aunt & uncles until I was 18. well, they were severely

strict as far as alot of my health goes, never let me spend the night at

friends house's, never go outside after dark, exactly every 4 hours I was

either on the BD board or had my pumeling vest machine on. nebs and

inhailers alternating. ALWAYS something. I got trach'd when I was 13 I

had come down w/ a bad cold & decided (on my own) that it was time for a

trach. It wasn't put in on an emergency basis, but since I've had it done

it was the 2nd best thing I've had done.

As far as home-schooling goes it's a catch 22. I was main-stream public

school, but it never failed I'd go to school & end up back @ the

hospital. As far as colds, resp. infections, and other health problems

goes home school would of been a good idea. BUT!!!! I would have missed

out on sooo much! I was on our Varsity cheerleading squad, prom,

graduation, ect...Friends are very important in a child's life,

especially a child w/ sma. Why? I think it's important to have something

to live for, alternate to same ol' same ol' at home. My HS friends said I

learned more in the hospital school and used HS as a social gathering.

heehee. Now, don't get me wrong, I wanted to be so much like the other

kids at school I decided to skip school w/ some friends,,, well it was

raining that day and not only did the rain short out my electric chair, I

got sick too. But, I have such good memories about being bad I dont let

sma stop me.

I bet your wondering if my trach was 2nd best, what's 1st? Well, many of

you know going pee is an important thing during the day, and it's SOO

hard to do transfers out and about, and I use the hoyer for transfers so

basically I have to hold it all day long at work, the mall wherever.

Until I had this new procedure done called a Mitrophnoff. It's where the

doc's take your appendex and make a canal from your belly button to your

bladder. In my case the appendex was junk so they used my intestine. It's

NOT a super pubic, there are no tubes attached and all you gotta do is

stik a cath. in your bbutton when ya gotta go, wheel up to the toilet,

go, take it out & your on your way! It's awesome! I have severe colds

often and thanks be to Jesus I only was laid up one week.

Phew! I type w/ a mouthstick and my teeth hurt, I am just a lil winded

today.....

Good thing I work for a dentist

~jodi

JMMO

[Guest guest]

Matt didnt have his electric until he was 3 not 2 sorry

Steph

[Guest guest]

I'm just north of Seattle, about half an hour. Well, until August when I'm

going to college in Utah.

My mom started me in preschool when I was 3 so that I could get therapy

through the school. I guess she didn't have any problems getting rid of me!

I personally think that was a little crazy, but whatever. Matt's gonna be

just fine in 1st grade! Those were the days when I still thought school was

fun.

His pictures are adorable! What a cute kid!

~e~

[Guest guest]

Do you still have the trach?

Re:Bronc Scope??

I haven't been hospitalized much until a few years ago. When I was 18

months I had the muscle biopsy to find out that I had SMA. I don't

remember that. Then when I was 10 I had phnemonia and was in the

hospital 2 weeks. Then in August 2000 (I was 21) I was in the hospital

1 month. That is when I had respitory falier and had the trach put in

and the first bronc scope was done because I just laid down and

couldn't breath and they suctioned a lot of blood out my trach. Then

about 6 months later I had the bronc done again do to bleeding in my

trach and difficulty breathing. I was just there a few hours. About a

month later I had an outpatient surgery to stitch my stomach up

because I had a feeding tube when I got the trach put in and I had it

taken out later but it didn't heal closed all the way. So up until I

was 21, I was fine.

Can Matt still walk? Does he have a trach or anything? I could walk at

his age with assistance of a walker. I didn't get a wheelchair until I

went to Kindergarden.

Kristi

> Kristi ,

> Sorry to hear you had that done. That does not sound to exciting.

> I would hate the thought of them doing that to my little boy. How

old were

> you?

> Do you know how many times you have been hospitalized?

> Matt has been in 2 times and he will be 5 in Aug. I am just curious?

>

> Take care, Gosh hope you dont have to have one of those again.

> I guess it could have been worse.

> Good luck,Take care Matts mom, Steph

>

>

>