Re: pity party marathon..love it

August 19, 2010

The last few days of posts were powerful.....It just shows how scary all

of this is, for everyone. We all have the same fear....and that is of the

unknown. Not one us is in the same boat, but most of us are petrified.

I felt like apologizing for my last post because it was scary, I

know....But, Im not going to....I think its better that we all be honest

about our very valid fears and share them with others who may face similar

fears in the future. All of us deal with this difficult stuff

differently, and I hope my " hip pain " post didnt scare anyone off....But,

this is our reality and Im not one to sugar coat any situation. Perhaps,

I could...But, I dont think it would benefit anyone on this group. The

fact for us is, PIS treated by ineffective bracing, halos, casts, and

distraction rods has been over 10 yrs of trauma.....This repeated trauma

has gone on for over a decade and just when we think we may be done for

while.....something happens and we probably are not. The thought of

having to discuss details of another invasive, painful surgery with my 12

yr. old is devistating to me....She has been through enough and was

finally starting to get a life. Now, she has a constant level 2 of pain

and by days end shes at level 5. My child is too young to get addicted to

pain killers and I dont think she'll be on the honor roll much longer if

she must be on a pain pill regiment starting at 12...Her pelvis is growing

and her chest cavity doesnt appear to be....I dont know if it ever will.

Its been the size of a 6 yr old for 4 yrs.....Not to mention, the risks

that will come along with trying to get the metal out of her. The metal

has eroded so far, that I have no idea what the long term effects of this

will be....I will indeed get to the bottom of it, however....Just need to

stay focused, strong and must try not to worry. If I let the worry take

over, I'll get sick and wont be able to do the research and legwork needed

to make the best choices possible in her care. I must find things to be

grateful for (and there are MANY) and remind myself everyday how far she

has come. Imagine where she would be now without the care she has

received? For those of you who dont know, Liv was at 100 degrees by age

2! Imagine how 10 yrs of growth would have affected a 100 degree curve of

a growing child with no halos or casts? It would have been more than

devistating.

I say let it all hang out on this group. We must rely on people who get

it. For me, its just too draining to share with people who dont as I am

continually justifying the situation, how I feel, etc.....

Im glad we have eachother...Thats about all I know today.

Love you all.

HRH

> I wish we could do that!!! ha ha!!

>

>> That is what we need on tshirts...SCOLIOSIS SUCKS!

>>

>> Â

>>

>> ________________________________

>> From: Joan Vallee <hayro1611@...>

>> infantile scoliosis treatment

>> Sent: Thu, August 19, 2010 10:58:49 AM

>> Subject: Re: Bexon update/pity party

>>

>> Â

>> You have every right toÂ be angry, frustrated and worn outÂ by this

>> whole

>> process.

>> I have pity parties all the time, but I noticed that people have stopped

>> coming

>> to them...LOL.

>>

>> Keep your chinÂ up and know you are not alone. Scoliosis SUCKS and I

>> think

>> everyone on this group would agree

>>

>> Â Joan

>> mom to Hayden 3

>> 39 degrees down from 62

>> After 4 casts, now in a brace 23 hours/day

>> Treated at ish Rite Hospital

>> Dallas, TX

>>

>> ________________________________

>> From: NIck Guthe <nickguthe@...>

>> infantile scoliosis treatment

>> Sent: Wed, August 18, 2010 7:32:44 PM

>> Subject: Bexon update/pity party

>>

>> Â

>>

>> Sorry for the rant I am about to express, but that is why we have this

>> amazing

>> group. There is only one reason we are not done with casts by now, and

>> that is

>> the ignorance of the medical community and our first ortho who kept us

>> watching

>> and waiting for 4 months while Bexon severely, dangerously curved. We

>> can't go

>> backwards, it is what it is, you can't hold on to anger....BUT:

>>

>> I HATE SCOLIOSIS!!! If you are reading this and you are new, please do

>> not

>> let

>> your doctor keep you waiting while your child's spine gets dangerously

>> worse. It

>> will make the treatment far more difficult in the long run.

>>

>> I am angry that Bexon will have such a long road. I am sick and tired of

>> casts

>> and cast trips. Welcome to my pity party, I apologize in advance that

>> the

>> hostess is such a wreck. Enjoy the dip. Please have an adult beverage or

>> sugar

>> laden confection on me. Or something fried containing a lot of cheese.

>>

>> If my doctor- Bex's doctor read this- I know he won't but it bears

>> saying-

>> I

>> think he is one of the best doctors and greatest men who ever walked the

>> face of

>> planet Earth, and he is doing EVERYTHING right. I worship his practice

>> and

>> his

>> grace. 5 years ago we would not have had this treatment available to us.

>> We are

>> one of the luckiest families to be treated at SLC. But just 2-3 months

>> sooner in

>> casts and we could have been done by now! I am grateful my son is alive.

>> His

>> light and joy is the reason I breathe in and out all day. But the

>> unknown

>> future

>> is wearing and draining. My 3 year old has had anesthesia 11 times. That

>> is

>> wrong and it didn't need to happen.

>>

>> Shriners and ISOP- with Dr. Mehta's pioneering practice- saved my child,

>> I

>> know

>> it and I can barely believe how close we came to missing this treatment.

>> We are

>> lucky. We know it.

>>

>> Here is what GOOD could happen and I do believe it could: Bex could get

>> down to

>> 18, 15, even 10 degrees in cast in the next 3 casts, then improve even

>> more

>> potentially in a brace, since the casts are curing his rotation. By age

>> 4

>> he

>> will likely be in a light brace and by age 5 he could be even better,

>> even

>> straighter than when we finish casts. So I am still optimistic.

>>

>> But if it doesn't go that way,Â we will cast 2-3 more times, then

>> brace,

>> then go

>> back into casts if he regresses, then if we have to we will do more

>> bracing and

>> casting and even halo traction before I would dream of growing rods or

>> VEPTR.

>> That is just my opinion for Bex, boys grow longer than girls and I won't

>> do

>> anything to shorten his growing time if I can avoid it. I will do

>> growing

>> rod

>> surgery if necessary, of course, as a last resort. I do not think

>> repeated

>> surgeries every six months would be easier at all, I think it would be

>> much

>> harder- for us and for Bex.

>>

>> As much as casting can suck- a lot of the time it's just normal life.

>> The

>> casts

>> are temporary. Setbacks and getting stuck- that is hard. BUT we got

>> improvement

>> in rotation, and that happy thought WILL sink into my feeble brain once

>> I

>> stop

>> crying.

>>

>> I know I am feeling negative from lack of sleep, travel and essentially

>> 4

>> casts

>> with very little change in the main COBB angle- I know I shouldn't focus

>> on

>> numbers, but if you are in this scoliosis fight with your child, numbers

>> DO

>> matter! This is a very, very hard thing to go through. One cast is hard,

>> 8-10-12

>> SUCKS!

>>

>> If you are new, ACT FAST! Don't end up like us!!!

>>

>> I am tired right now, but I I will rise and fight and dream and hope.

>> It's

>> not

>> over 'til the fat lady who ate all of Salt Lake City sings.

>>

>> Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City

>> Shriners,

>> currently down from 62 degrees to 20 in cast)

>>

>> ________________________________

>> From: audreymdawson <audreymdawson@...>

>> infantile scoliosis treatment

>> Sent: Wed, August 18, 2010 1:12:52 PM

>> Subject: Re: Bex update

>>

>> Â

>> Heidi,

>> After so many casts, holding at 20 degrees must be disappointing and

>> frustrating! What did Dr. D'A say about it?

>>

>> mom to Audrey, 3rd cast, SLC

>>

>>>

>>> Bex is safely in a bright green Incredible Skinny Hulk cast!

>>> He is still holding in cast at about 20 degrees.I am sad we didn't get

>>> a

>>> leap

>>>there. Out of cast he is probably 30-35 degrees, and this Mother does

>>> not

>>> feel

>>>safe at that number.

>>> The very good news is he now has almost NO rotation- he began casting

>>> with

>>>severe rotation.

>>> Thank you so much for your posts and prayers, we will press on for 2-3

>>> more

>>>casts at least, praying for lower numbers by then. It's emotional each

>>> and every

>>>trip, but we met The Hannahs- Noah is one of our biggest inspirations-

>>> he

>>> looks

>>>just awesome in his brace! And we got to meet Olivia and her family- a

>>> treat.

>>>You CAST parents are the cream of the crop.

>>>

>>> Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City

>>> Shriners,

>>>currently down from 62 degrees to 20 in cast)

>>>

>>

>

August 22, 2010

I'm so glad that we all have each other too. You are all pretty much the only people I talk to about this as no one around me understands. Patty, mom of Isabella, 3 years old, in 7th scoli cast (Rochester) & mom to (9) & Evan(6)From: "heather@..." <heather@...>infantile scoliosis treatment Sent: Thu, August 19, 2010 2:28:52 PMSubject: Re: pity party marathon..love it

The last few days of posts were powerful.....It just shows how scary all

of this is, for everyone. We all have the same fear....and that is of the

unknown. Not one us is in the same boat, but most of us are petrified.

I felt like apologizing for my last post because it was scary, I

know....But, Im not going to....I think its better that we all be honest

about our very valid fears and share them with others who may face similar

fears in the future. All of us deal with this difficult stuff

differently, and I hope my "hip pain" post didnt scare anyone off....But,