Re: Olivias procedure

February 27, 2008

---- hrhandco wrote:

> Well, we have one more day. I am so nervous. I saw the hardware

> yesterday and got all of my questions answered..... I guess I am as

> confident as I can be about this procedure. The installation of the

> VEPTR was brutal for Olivia 2 yrs ago, so the removal and replacement

> should be the same or worse (?). I dont want to put that out there,

> but I must be real about this. I never been so scared about anything.

> I am trying my best not to show it, but Olivia knows me well.....

> She is doing her best to be brave, but she cried about it in the appt.

> yesterday. My poor little girl is so scared,too.

> We will have a family dinner at a nice steak house, tonight because

> steak is Livs favorite....Then to Primary at approx. 6 a.m., tomorrow.

> She could be at Primary for a week, then we will be transferred to

> Shriners, or my brothers house for the rest of her recovery.

> Carmell, I'll call you on Sat. and hopefully you dont have to come

> down to keep me together. I relied on you a lot last time, and may

> need to call you, Shellie, and many others for reassurance and

> support. I appreciate your help, as always.

> Thanks to all of you who will be praying for my girl tomorrow morning.

> Please continue sending us your strength. We need it.

> I am trying not to be angry, right now! I am so mad/sad that my little

> girl has to go through this. I hope I can keep it together. I dont

> feel very strong this morning. I need to get out all of my

> tears/anxiety this a.m. before she wakes up. I am so glad my brothers

> here, because he is her rock, right now. He also makes her laugh

> quite a bit, which is what she needs.

> Please continue to take care of new parents on this group, like you

> always do! I appreciate you all so much. I'll be available by phone

> today, then I am out. Once my girl has recovered, I will be back to

> work. Like I said before, I am more determined than ever to get ET

> out to the rest of the world, so kids dont have to suffer like this.

> ISOP needs all the help your willing to offer. We have a lot of work

> to do and I have so many irons in the fire at this point. ISOP will

> tackle it all in a few weeks. In the meantime, keep the ideas coming

> and lets get unified, so we can spread the word, effectively. Its

> parents like you that will improve the lives of so many, by demanding

> ET and helping Dr. Mehta/ISOP & the docs applying ET to spread the

> word.

> Love to you all,

> HRH

> Steak will DEFINATLY make her happy!!! No, seriously, I will be thinking of

ya'll and hope that everything goes well. Psalms 46:1 says " God is our refuge

and our strength, a very present help in trouble. " Just try to remember that He

is there for you and He will be right there with Oliva the WHOLE WAY! Not

trying to preach, but God is the only one who CAN when everone else CAN'T!

Thinking of you, Janet

February 27, 2008

Hugs to you and Olivia.

You know you need to be positive with all of this. You have to think about the

GOOD that's going to come out of this. Dwelling on the negative feelings and

experiences is only going to make it harder to get through this, for you more

than her. If you have to, write down the blessings in your life... you have

MANY! Start with your beautiful girl. You have MANY cyber friends/family who

love you and care about you. We want you to feel as good as you possibly can

about this because you know as well as any of us that there are no other GOOD

options right now. Olivia has a huge amount of strength. Your positive

calmness will bring that out and only help you even more. I promise. Go over

your list of the many great things about your life, over and over and over to

get through the long waiting time. This anticipation is the hardest time

emotionally. I'll be there in a heartbeat if you need an extra shoulder to lean

on. You know that. I'll try not to lecture too much

Take care and I know you are in the best hands possible for Miss Olivia. They

will take very good care of you both.

Carmell

Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 17, GERD, and

Braydon 12, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient

#137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies,

missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal stenosis, chronic

constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney,

ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic

bladder, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96,

1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus

deformity, GERD, Gastroparesis, SUA, etc.

http://carmellb-ivil.tripod.com/myfamily/

Congenital scoliosis support group

http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

---------------------------------

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February 27, 2008

---

Please know that we are thinking of you and Olivia. We know this must

be so difficult for you!!! If I didn't have to worry about work I

would be on my way to SLC!!!! We're only about 5 hours away. You are

strong and so is Olivia. I know you don't feel that way right now and

that's okay -- you have all of us to lean on and together we will get

through this. We love you and Olivia so much!!!! Let us know what we

can do.

Shara

> >

> > Well, we have one more day. I am so nervous. I saw the hardware

> > yesterday and got all of my questions answered..... I guess I am

as

> > confident as I can be about this procedure. The installation of

the

> > VEPTR was brutal for Olivia 2 yrs ago, so the removal and

> replacement

> > should be the same or worse (?). I dont want to put that out

there,

> > but I must be real about this. I never been so scared about

> anything.

> > I am trying my best not to show it, but Olivia knows me

well.....

> > She is doing her best to be brave, but she cried about it in the

> appt.

> > yesterday. My poor little girl is so scared,too.

> > We will have a family dinner at a nice steak house, tonight

because

> > steak is Livs favorite....Then to Primary at approx. 6 a.m.,

> tomorrow.

> > She could be at Primary for a week, then we will be transferred

to

> > Shriners, or my brothers house for the rest of her recovery.

> > Carmell, I'll call you on Sat. and hopefully you dont have to come

> > down to keep me together. I relied on you a lot last time, and

may

> > need to call you, Shellie, and many others for reassurance and

> > support. I appreciate your help, as always.

> > Thanks to all of you who will be praying for my girl tomorrow

> morning.

> > Please continue sending us your strength. We need it.

> > I am trying not to be angry, right now! I am so mad/sad that my

> little

> > girl has to go through this. I hope I can keep it together. I

dont

> > feel very strong this morning. I need to get out all of my

> > tears/anxiety this a.m. before she wakes up. I am so glad my

> brothers

> > here, because he is her rock, right now. He also makes her laugh

> > quite a bit, which is what she needs.

> > Please continue to take care of new parents on this group, like

you

> > always do! I appreciate you all so much. I'll be available by

> phone

> > today, then I am out. Once my girl has recovered, I will be back

to

> > work. Like I said before, I am more determined than ever to get

ET

> > out to the rest of the world, so kids dont have to suffer like

> this.

> > ISOP needs all the help your willing to offer. We have a lot of

> work

> > to do and I have so many irons in the fire at this point. ISOP

will

> > tackle it all in a few weeks. In the meantime, keep the ideas

> coming

> > and lets get unified, so we can spread the word, effectively. Its

> > parents like you that will improve the lives of so many, by

> demanding

> > ET and helping Dr. Mehta/ISOP & the docs applying ET to spread the

> > word.

> > Love to you all,

> > HRH

> >

>

February 27, 2008

Anything you need , just call, DAY or NIGHT. I love you and your girl!!!

I'll be praying. She will do so well. All of this is for a reason. Wish I

could tell you what, but just trust God. He's got her. LOVE YOU.

Shellie

hrhandco wrote:

Well, we have one more day. I am so nervous. I saw the hardware

yesterday and got all of my questions answered..... I guess I am as

confident as I can be about this procedure. The installation of the

VEPTR was brutal for Olivia 2 yrs ago, so the removal and replacement

should be the same or worse (?). I dont want to put that out there,

but I must be real about this. I never been so scared about anything.

I am trying my best not to show it, but Olivia knows me well.....

She is doing her best to be brave, but she cried about it in the appt.

yesterday. My poor little girl is so scared,too.

We will have a family dinner at a nice steak house, tonight because

steak is Livs favorite....Then to Primary at approx. 6 a.m., tomorrow.

She could be at Primary for a week, then we will be transferred to

Shriners, or my brothers house for the rest of her recovery.

Carmell, I'll call you on Sat. and hopefully you dont have to come

down to keep me together. I relied on you a lot last time, and may

need to call you, Shellie, and many others for reassurance and

support. I appreciate your help, as always.

Thanks to all of you who will be praying for my girl tomorrow morning.

Please continue sending us your strength. We need it.

I am trying not to be angry, right now! I am so mad/sad that my little

girl has to go through this. I hope I can keep it together. I dont

feel very strong this morning. I need to get out all of my

tears/anxiety this a.m. before she wakes up. I am so glad my brothers

here, because he is her rock, right now. He also makes her laugh

quite a bit, which is what she needs.

Please continue to take care of new parents on this group, like you

always do! I appreciate you all so much. I'll be available by phone

today, then I am out. Once my girl has recovered, I will be back to

work. Like I said before, I am more determined than ever to get ET

out to the rest of the world, so kids dont have to suffer like this.

ISOP needs all the help your willing to offer. We have a lot of work

to do and I have so many irons in the fire at this point. ISOP will

tackle it all in a few weeks. In the meantime, keep the ideas coming

and lets get unified, so we can spread the word, effectively. Its

parents like you that will improve the lives of so many, by demanding

ET and helping Dr. Mehta/ISOP & the docs applying ET to spread the

word.

Love to you all,

HRH

---------------------------------

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February 27, 2008

Dear ,

I can only imagine all the emotions that both of you are feeling. I am glad your

brother has the ability to make you and Olivia laugh. That is the best medicine

for stress. I have been thinking of you both and counting down the days. Because

of you, Olivia has the best doctors. They will take great care of her. You hang

in there, and know that I am in your corner, praying and pulling for you and

your beautiful little girl.

All my best,

Love,

and

Olivias procedure