Re: Deedee

[Guest guest]

Deedee,

We planned a trip to Disney for July as we wanted to spend some

family time together along with my Mom prior to this surgery we are

dreading. Jillyan has come so far and now we will have to take a

few steps back. I'm not really sure what the subaortic membrane

removal entails....as we meet with our surgeon this Thursday. From

my reading it appears they will go in through her chest and put her

on bypass during the surgery. This membrane can grow back, and my

impression is, that they can only do this surgery so many times. I

hope that once removed it stays away, but with the defective

bicuspid aortic valve her chances are greatly increased for

regrowth.

Hailey is doing great as always and very excited about Florida. I

would have loved to come to the conference, but with this surgery on

the horizon it is very hard for my husband to see other CHARGE kids

and how well they are doing and then we see Jillyan...It has all

been a bit overwhelming getting this news this summer. We are

planning on August for the surgery.

I hope Bryce and your family is doing well and thanks for the

email. If you do plan a get together let me know. Even if Jillyan

can't make it I would love to meet other families in our area.

Huggins

Mom to Jillyan and Hailey

>

> Hi, this is Deedee and we met a few years ago at your house.

Jillian was just

> a baby at the time and Bryce was probably 5 (he's now 8). I'm

sorry to hear

> about the heart surgery coming up! I know that's scary and

discouraging. How is

> your older daughter doing with all of this?

>

> Are you all going to the conference? I'm going alone but I keep

having

> thoughts of getting the mid- NC families together as well. I just

can't seem to get

> the time to arrange it.

>

> Again, I'm really sorry about the heart surgery ahead. Keep us

posted about

> that.

>

> Deedee

>

>

>