Catching up, new baby and coming to the conference!

[Guest guest]

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those online (although they are a little outdated!)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