Re: Catching up, new baby and coming to the conference!

[Guest guest]

Dear Kristi,

It sounds as though you could have spent weeks typing, if you had to detail

it all.

Thankfully Gracie is feeling well again.

Preston's making me sad that I won't be in Ca. to get in line to hold him.

Oh, and I tried to make out Gracie's shirt-but no luck-now the curiosity's

getting to me.

Watz it say!!!!!!!

;-)

in Ma.

************************************** See what's free at http://www.aol.com.

[Guest guest]

Kristi-

" Wow " doesn't even begin to cover it! What a year! I'm so glad that Gracie

is now well and that little Preston is thriving! It'll be so fun to meet

him at the conference. I hope you can breathe easy now. Surely your family

will have a break from trauma and drama after cramming so much into such a

short time :-)

Michele

Aubrie's mom 9 yrs CHaRgE and 15 yrs

[Guest guest]

Kristi,

Wow, I need to go to bed just reading your posting! Congrats on the birth of

your baby boy. It sounds like Gracie's had her share and several other people's

as well. Wishing her well and hoping she bounces back.

Jeanie Colp

mom to MacKenzie 9 CHARGE, Tyler 15 & Zachary 13

[Guest guest]

Kristi,

I'd been wondering about you, it's great to hear from you. Congratulations

on the new baby! Can't wait to meet him in California. I'm sorry to hear

what a tough year Gracie has had; hopefully, she'll bounce back soon.

Hopefully you'll be able to pop in now and again!

>

> Hi everyone!

>

> It's been a long time... I don't think I've posted for almost a

> year. I have " lurked " a bit and tried to keep up on as much as I

> could, but I'd been so busy for a while that my email box was full

> for a few months!

> I will be as brief as I can to catch up...

>

> Gracie was pretty sick from July of last year thru March. She had a

> nasty respiratory infection (which is VERY rare for her) in July that

> led to a hospitalization (the first of five between July and

> December) and the discovery that her heart was not compensating as

> well as it was just a month before... she needed another mitral valve

> repair (a replacement will have to happen eventually) and a subaortic

> membrane removed. That surgery didn't occur until December because

> she ended up with a severe bacterial infection in her stomach that

> lasted from October thru March. She became asymptomatic in late

> November so they scheduled surgery for December. We spent a total of

> 8 days in the ICU... including Christmas... and although a bummer to

> be in on the holiday, we were all together and Gracie was recovering

> well. The bacterial infection reared it's ugly head again in January

> and was even worse that time - - throughout the whole ordeal, she

> lost over 4 pounds and was so very weak.

>

> In the midst of all of this, in September we learned I was pregnant.

> Between managing Gracie's care, working full time and being pregnant,

> I was exhausted - - thus no posting! And, despite great intentions

> to be more involved in helping with the conference and fundraising,

> we basically dropped off the face of the CHARGE family earth!

>

> The day after Gracie was discharged from her heart surgery (Dec.

> 28th) I had my " big " high-level ultrasound appointment. I will spare

> you all the details and drama... but for a handful of days we thought

> that the baby had a life-threatening heart defect. THANK GOODNESS

> the doctors were wrong. I had several more ultrasounds with Gracie's

> cardiology group and they ruled out all of the initial diagnoses, but

> and I didn't really " exhale " until our son was born on May

> 9th... perfectly healthy and wonderful!

>

> Gracie LOVES him! :-) Here is a link to check out his first

> photos...

> http://picasaweb.google.com/Kristiswann/WebAlbumPrestonSBirth

> I actually got ONE thing accomplished in the last six weeks and got

> those online (although they are a little outdated!)

> We will be bringing Preston to the conference, but Miss Gracie will

> be staying home. It's just too much for her...

>

> There's so much to update regarding her progress and setbacks... it's

> been a tough year. She was too sick for school services and therapy

> from Oct. to Feb. She was able to slowly make strides in her

> communication and other cognitive development, but understandably

> regressed in gross motor skills. She is back to sitting with support

> only - - she really detests sitting independently on the floor. And

> the little girl who was LOVING her gait trainer in spring of 2006

> won't get in it at all now. So... we are starting from scratch and

> trying to gain more strength and stamina. We are still fighting

> migraines and cycles of days where she doesn't want to be touched or

> move at all due to pain/discomfort. We are exploring alternative

> therapies and meds to help with this... it's been a struggle to

> manage the migraine/pain cycles her whole life. We hope to start

> introducing her to a classroom environment but are going to have to

> hold another IEP just to " negotiate " the transition process... I will

> be posting for some advice as that time approaches.

> That's basically it... in a VERY generalized nutshell. :-)

> We are looking forward to seeing and meeting everyone attending the

> conference!

>

> Kristi

> (Mommy to Gracie - 4 w/CHARGE, Preston - 6 weeks, and wife to )

>

>

>

--

Weir

Personal Web Site:

http://chargesyndrome.info

The Adventures of Kennedy Blog:

http://chargesyndrome.blogspot.com

Secretary, CHARGE Syndrome Foundation Inc:

http://www.chargesyndrome.org

Email:

lisa@...

" It is far better to grasp the universe as it really is than to persist in

delusion, however satisfying and reassuring. " --Carl Sagan

[Guest guest]

HEY great to c u again wat a tough year missed u arghhhhhh the ac terial

infections i had one of them in a central line and in my blood a few years

ago after loads of anitfungals and stuff the only way was take that line out

hugs to u all i love ur pics

>

> Kristi,

> I'd been wondering about you, it's great to hear from you. Congratulations

> on the new baby! Can't wait to meet him in California. I'm sorry to hear

> what a tough year Gracie has had; hopefully, she'll bounce back soon.

> Hopefully you'll be able to pop in now and again!

>

>

> On 6/22/07, gracelynsmom2003 kristiswann@... >

> wrote:

> >

> > Hi everyone!

> >

> > It's been a long time... I don't think I've posted for almost a

> > year. I have " lurked " a bit and tried to keep up on as much as I

> > could, but I'd been so busy for a while that my email box was full

> > for a few months!

> > I will be as brief as I can to catch up...

> >

> > Gracie was pretty sick from July of last year thru March. She had a

> > nasty respiratory infection (which is VERY rare for her) in July that

> > led to a hospitalization (the first of five between July and

> > December) and the discovery that her heart was not compensating as

> > well as it was just a month before... she needed another mitral valve

> > repair (a replacement will have to happen eventually) and a subaortic

> > membrane removed. That surgery didn't occur until December because

> > she ended up with a severe bacterial infection in her stomach that

> > lasted from October thru March. She became asymptomatic in late

> > November so they scheduled surgery for December. We spent a total of

> > 8 days in the ICU... including Christmas... and although a bummer to

> > be in on the holiday, we were all together and Gracie was recovering

> > well. The bacterial infection reared it's ugly head again in January

> > and was even worse that time - - throughout the whole ordeal, she

> > lost over 4 pounds and was so very weak.

> >

> > In the midst of all of this, in September we learned I was pregnant.

> > Between managing Gracie's care, working full time and being pregnant,

> > I was exhausted - - thus no posting! And, despite great intentions

> > to be more involved in helping with the conference and fundraising,

> > we basically dropped off the face of the CHARGE family earth!

> >

> > The day after Gracie was discharged from her heart surgery (Dec.

> > 28th) I had my " big " high-level ultrasound appointment. I will spare

> > you all the details and drama... but for a handful of days we thought

> > that the baby had a life-threatening heart defect. THANK GOODNESS

> > the doctors were wrong. I had several more ultrasounds with Gracie's

> > cardiology group and they ruled out all of the initial diagnoses, but

> > and I didn't really " exhale " until our son was born on May

> > 9th... perfectly healthy and wonderful!

> >

> > Gracie LOVES him! :-) Here is a link to check out his first

> > photos...

> > http://picasaweb.google.com/Kristiswann/WebAlbumPrestonSBirth

> > I actually got ONE thing accomplished in the last six weeks and got

> > those online (although they are a little outdated!)

> > We will be bringing Preston to the conference, but Miss Gracie will

> > be staying home. It's just too much for her...

> >

> > There's so much to update regarding her progress and setbacks... it's

> > been a tough year. She was too sick for school services and therapy

> > from Oct. to Feb. She was able to slowly make strides in her

> > communication and other cognitive development, but understandably

> > regressed in gross motor skills. She is back to sitting with support

> > only - - she really detests sitting independently on the floor. And

> > the little girl who was LOVING her gait trainer in spring of 2006

> > won't get in it at all now. So... we are starting from scratch and

> > trying to gain more strength and stamina. We are still fighting

> > migraines and cycles of days where she doesn't want to be touched or

> > move at all due to pain/discomfort. We are exploring alternative

> > therapies and meds to help with this... it's been a struggle to

> > manage the migraine/pain cycles her whole life. We hope to start

> > introducing her to a classroom environment but are going to have to

> > hold another IEP just to " negotiate " the transition process... I will

> > be posting for some advice as that time approaches.

> > That's basically it... in a VERY generalized nutshell. :-)

> > We are looking forward to seeing and meeting everyone attending the

> > conference!

> >

> > Kristi

> > (Mommy to Gracie - 4 w/CHARGE, Preston - 6 weeks, and wife to )

> >

> >

> >

>

> --

> Weir

>

> Personal Web Site:

> http://chargesyndrome.info

>

> The Adventures of Kennedy Blog:

> http://chargesyndrome.blogspot.com

>

> Secretary, CHARGE Syndrome Foundation Inc:

> http://www.chargesyndrome.org

>

> Email:

> lisa@...

>

> " It is far better to grasp the universe as it really is than to persist in

> delusion, however satisfying and reassuring. " --Carl Sagan

>

>

[Guest guest]

Kristi,

WOW, what a year you have had!! The gorgeous pictures sure bely the sickness

that has been so much a part of yours and Gracielynn's time!!

And Preston...how very cute!!!!

Thanks for them.

pam

Catching up, new baby and coming to the conference!

Hi everyone!

It's been a long time... I don't think I've posted for almost a

year. I have " lurked " a bit and tried to keep up on as much as I

could, but I'd been so busy for a while that my email box was full

for a few months!

I will be as brief as I can to catch up...

Gracie was pretty sick from July of last year thru March. She had a

nasty respiratory infection (which is VERY rare for her) in July that

led to a hospitalization (the first of five between July and

December) and the discovery that her heart was not compensating as

well as it was just a month before... she needed another mitral valve

repair (a replacement will have to happen eventually) and a subaortic

membrane removed. That surgery didn't occur until December because

she ended up with a severe bacterial infection in her stomach that

lasted from October thru March. She became asymptomatic in late

November so they scheduled surgery for December. We spent a total of

8 days in the ICU... including Christmas... and although a bummer to

be in on the holiday, we were all together and Gracie was recovering

well. The bacterial infection reared it's ugly head again in January

and was even worse that time - - throughout the whole ordeal, she

lost over 4 pounds and was so very weak.

In the midst of all of this, in September we learned I was pregnant.

Between managing Gracie's care, working full time and being pregnant,

I was exhausted - - thus no posting! And, despite great intentions

to be more involved in helping with the conference and fundraising,

we basically dropped off the face of the CHARGE family earth!

The day after Gracie was discharged from her heart surgery (Dec.

28th) I had my " big " high-level ultrasound appointment. I will spare

you all the details and drama... but for a handful of days we thought

that the baby had a life-threatening heart defect. THANK GOODNESS

the doctors were wrong. I had several more ultrasounds with Gracie's

cardiology group and they ruled out all of the initial diagnoses, but

and I didn't really " exhale " until our son was born on May

9th... perfectly healthy and wonderful!

Gracie LOVES him! :-) Here is a link to check out his first

photos...

http://picasaweb.google.com/Kristiswann/WebAlbumPrestonSBirth

I actually got ONE thing accomplished in the last six weeks and got

those online (although they are a little outdated!)

We will be bringing Preston to the conference, but Miss Gracie will

be staying home. It's just too much for her...

There's so much to update regarding her progress and setbacks... it's

been a tough year. She was too sick for school services and therapy

from Oct. to Feb. She was able to slowly make strides in her

communication and other cognitive development, but understandably

regressed in gross motor skills. She is back to sitting with support

only - - she really detests sitting independently on the floor. And

the little girl who was LOVING her gait trainer in spring of 2006

won't get in it at all now. So... we are starting from scratch and

trying to gain more strength and stamina. We are still fighting

migraines and cycles of days where she doesn't want to be touched or

move at all due to pain/discomfort. We are exploring alternative

therapies and meds to help with this... it's been a struggle to

manage the migraine/pain cycles her whole life. We hope to start

introducing her to a classroom environment but are going to have to

hold another IEP just to " negotiate " the transition process... I will

be posting for some advice as that time approaches.

That's basically it... in a VERY generalized nutshell. :-)

We are looking forward to seeing and meeting everyone attending the

conference!

Kristi

(Mommy to Gracie - 4 w/CHARGE, Preston - 6 weeks, and wife to )