Gracie Update

Hi,

This post is way out of order. Sorry about that

As some of you know Gracie went to UCSF for another cardiac catheterization a few days before Christmas. First the good news. They were going to try to close up her ASD (one of the holes in her heart) while in the cath lab but they couldn't find it! Meaning it has closed up on it's own! AWESOME news! The second good thing is that they have determined that she no longer has pulmonary hypertension (this is what was preventing her from going to high altitudes) I guess she has outgrown it. They even did a altitude test to simulate the air quality to what it would be at a high altitude like at my dad's cabin and she passed with flying colors! Her sats stayed at 100 and she had no problems with her blood pressure or heart rate! The bad news is that her tri-cuspid valve is still leaking and continues to be a problem, it will need to be dealt with at some point but we are hoping it can hold out until she is bigger/older (5 or 10 years old) She also had her pacemaker checked out and and we found that her atrial lead is fractured. They were able to pull up the data and could determine that is stopped working on September 23. (I checked the calendar it looked like any normal Tuesday, no play dates or anything). The doctors at UCSF said that it probably was not from any sudden trauma, that it most likely happened over time. My understanding is that the atrial lead just monitors her heart rate and only "kicks in" if her rate goes above or below a certain range. The ventricular lead paces her heart continuously. Her cardiologist at Kaiser, Dr. Cooper, said that this has never happened to one of his patients before... This guy is in his 60's (I think) and has been in practice for many years so that fact that he has never seen this happen before concerns me. I am worried that the important lead could just stop working at any time...

We went to Kaiser today (1/13/09) and Gracie got all set up with something called a halter monitor. It is a device that she has to wear for 24 hours. It has leads stuck to her chest like an ekg (we call them buttons) the leads are attached to a device that looks like a PDA that they put into a little purse like thing and she is wearing it. She has actually kept it on all day. We will return the equipment tomorrow and the results well be sent to Dr. Cooper. We see him on January 30th. Hopefully, he will information for us then. I guess to replace the leads requires major (open chest) surgery. Which stinks because her pacemaker will need to be replaced in 2 - 3 years. My thought was that if they need to replace the leads they should just replace the whole pacemaker while they are at it... That way she wouldn't have to have another surgery for 5 years. I was told it's not that simple.

Also, we told Dr. Cooper that we would like to take the kids to the snow at my dad's cabin. His nurse called me and said Dr. Cooper said she still can't go to high altitudes :( as usual I was not given any explanation. It is very frustrating to me when I hear one thing from UCSF then another thing from Dr. Cooper at Kaiser.

Sorry for my jumbled thoughts, and thanks for listening.

I will update after her next appointment on Jan. 30

A bit of good news!!! Gracie walked on Christmas eve!

Love & Blessings,

Jackie

She is getting a altitude test. They have her in the bubble and are controlling the air to what it would be at a high altitude like in the mountains.

This is the monitor during the altitude test... Sats are at 99%!

The Annual Christmas Performance At Church

Both Miranda and Coco's CCD Classes performed. I didn't get very many photos but here are the few that I did get.

Father Ken dresses as Santa. Scared the heck out of Gracie!

Miranda's Class singing. She is second from the end wearing the black & gold dress

Adam is not old enough for CCD yet. Here is is being silly

Here is Gracie being silly. She was having so much fun flirting with the people sitting behind us.
Luckily it was my friend Anita and her family so they weren't annoyed

Here is Miranda, embarrassed that I am taking her picture when she is supposed to be watching the other kids.

Miranda, Coco and Adam being silly when I am trying to get a nice photo!
(this is why I can never get a good pic for a Christmas Card lol)

Adam Gets His Little Dragon Green Belt

Mr. Stickney and Adam

Dinner with the Cassara's

Dave's sister and her family live in Los Altos which is really close to the hospital where baby Moriah is. We stopped by and had a visit with them then we all went out to dinner to a place in Mt. View called U Wink. It was the kids choice. Our kids loved it and really want a u Wink in Brentwood :) It was a really nice visit and we are looking forward to seeing them again for Christmas.

Monica, Miranda, Julianna

Adam, Paolo and Coco

November 23, 2008: Visiting the Nelson Family

I found the Nelson's on a message board/support group for parents of kids with heard defects. We started emailing each other and we now call each other friends. Their little girl, Moriah, is about one year younger than Gracie. The surgeons at their regular hospital have said that there was nothing more they could do for Moriah but the surgeon at Stanford was willing to take on her case. You can read more about them on their blog. http://momentswithmoriah.blogspot.com/
It was so nice to visit them and finally get a chance to meet them. Miranda and Coco both read stories to Moriah. Gracie couldn't go in but blew kisses from the door. Moriah is so sweet and beautiful. Please keep this family in your prayers. Note: I am writing this about a month after our visit, we have since visited them again. Moriah is having a tough recovery and they will still be her for Christmas so PLEASE keep them in your prayers.

Victoria, Gracie, Coco, Miranda, Adam & Justin

November 20, 2008

MIRANDA MADE THE PRINCIPAL'S HONOR ROLL!

WAY TO GO MIRANDA!

11/18/2008

HURRAY! SHE'S A NORMAL KID!

...Is what my Mother in Law said when I told her about Gracie's fall.

Gracie fell off of the kitchen chair and landed on her head and split her forehead open requiring her to get 5 stitches. So now her head matches her chest. If figures that the one kid that we give the "white glove" treatment to is the one who winds up in the ER with stitches!