Re: Update on Gracie and Thanks to all

[Guest guest]

Kristi-

I'm so glad things are improving for Gracie! You sound so upbeat --

that's quite a feat after all you've been through. A year ago, would

you ever have imagined yourself rejoicing in " long v. scary " ?? Funny

how our perspective changes so quickly.

Hugs to you all-

Michele W

Aubrie's mom (6 yrs)

[Guest guest]

Glad Gracie is improving and hope this continues.

Kay

Update on Gracie and Thanks to all

>

> Hi Everyone!

> First of all, I apologize for not responding to all of you sooner...

> it's been quite crazy! Thank you all for your well wishes, personal

> accounts and advice. I wish I had the time to respond to each and

> every one of you individually, but we are still all consumed with

> Gracie and what's happening with her at the hospital.

> Many of your responses brought me to tears... I cannot adequately

> express how much your candor and compassion moved me. Each day that

> I read posts from our AMAZING group of parents and kids, I am

> thankful for the internet and the fact that we have each other to

> learn from and lean on... Thank you all.

> Campanale... you asked where we live - - Northern California -

> just northeast of Sacramento, in Roseville.

> Gracie is fighting each day to improve. She is handling the weaning

> process pretty well and her withdrawals seem to be subsiding. She has

> added a few new " twists " to her condition, but nothing that can't be

> tackled with a little troubleshooting. She began throwing up every

> day for the last week... withdrawal related (possibly) but also due

> to a trach that was too long for her. Even though the xray showed it

> was perfect, everytime we changed her trach ties she'd gag...

> Finally, one of the doctors got tired of us and each nursing shift

> complaining and gave it a shot... seems to have done the trick!

> Otherwise, we are still fighting the pseudomonas and she requires a

> TON of suctioning... but all in all, things are looking much better!

> We've even seen more smiles the last couple of days and lots of

> clapping! She has even enjoyed a visit from Hazel, the hospital's

> resident dog!

> It's been a scary 5 1/2 weeks... and now that we seem to have crossed

> the hump, it's just going to be long... possibly another three weeks

> before all nursing care is set up! Long is much easier than scary!

> Thanks again to everyone!

> Kristi Swann

> mommy to Gracie (17 mos.) and wife to

>

>

>

>

>

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> the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

Kristi,

Great to hear things are going okay now. Give Gracie a hug from all of us.

[Guest guest]

Thank you for the update. We have been sending positive thoughts

your way. God Bless you all.

> Hi Everyone!

> First of all, I apologize for not responding to all of you

sooner...

> it's been quite crazy! Thank you all for your well wishes,

personal

> accounts and advice. I wish I had the time to respond to each and

> every one of you individually, but we are still all consumed with

> Gracie and what's happening with her at the hospital.

> Many of your responses brought me to tears... I cannot adequately

> express how much your candor and compassion moved me. Each day

that

> I read posts from our AMAZING group of parents and kids, I am

> thankful for the internet and the fact that we have each other to

> learn from and lean on... Thank you all.

> Campanale... you asked where we live - - Northern California -

> just northeast of Sacramento, in Roseville.

> Gracie is fighting each day to improve. She is handling the

weaning

> process pretty well and her withdrawals seem to be subsiding. She

has

> added a few new " twists " to her condition, but nothing that can't

be

> tackled with a little troubleshooting. She began throwing up every

> day for the last week... withdrawal related (possibly) but also due

> to a trach that was too long for her. Even though the xray showed

it

> was perfect, everytime we changed her trach ties she'd gag...

> Finally, one of the doctors got tired of us and each nursing shift

> complaining and gave it a shot... seems to have done the trick!

> Otherwise, we are still fighting the pseudomonas and she requires a

> TON of suctioning... but all in all, things are looking much better!

> We've even seen more smiles the last couple of days and lots of

> clapping! She has even enjoyed a visit from Hazel, the hospital's

> resident dog!

> It's been a scary 5 1/2 weeks... and now that we seem to have

crossed

> the hump, it's just going to be long... possibly another three

weeks

> before all nursing care is set up! Long is much easier than scary!

> Thanks again to everyone!

> Kristi Swann

> mommy to Gracie (17 mos.) and wife to

[Guest guest]

Kristi,

So glad to hear Gracie is improving!

Sharon from Oz