Sunday, June 26, 2011


We had yet another appointment at Shriners this week.
Out of all of our appointmenst with Dr.'s. Shriners is the most
exhausting on both Whitnee and I.
It NEVER fails that on her ride home from there she falls asleep
I believe it is the stress that comes from the visit.
At these appointments I actually get to see how Whitnee's body 
is growing through x-rays.
With the help of Shriners Whitnee has had 2 seperate surgerys 
for her achillies. The Last and most recent being the worst one yet.

Dr. Marcy has been the BEST Dr. She is so loving and sure makes
Whitnee feel comfortable while she is there.
Last time we were there, I was feeding her lunch during our visit.
She came in and took the food right out of my hands and started feeding
Whitnee and talking to her. She is VERY personable.

This week we went to find out how bad her Scoliosis is.

Dr. Marcy tried to "beat around the bush" so to say about options for Whitnee.
She asked about the chest support, if I had heard about it.
Which I had, but they are not very good with SMA kiddo's because
they are Belly Breathers.
So after her trying to find a kind way to tell me Whitnee needed surgery.
I came right out and said.
"Look I know she needs surgery, we have a few friends who are the same type of SMA
as Whitnee and both have been Very successful with the Veptur Surgery."
The re leaf on her face spoke volumes.
She turned to me and said "ok, I will be right back I need to make a phone call"
Which I have learned is a good and bad thing.
In our case it was good. We were able to meet with the Surgeon right then and there, to discuss the risks.
He also mentioned that the SMA kiddos do really well with the Veptur, and explained how it works.
They go in and attach 2 titanium rods, one for each side of her ribs. They attach at the top of her ribs and then 
secure in her hip bone. Then every 6 months she goes in and has them extended, so they grow with her.

I am SOOOO glad she made that phone call, it would have taken MONTHS to get in and see him.
We are looking to do the surgery in the next few months. 
Still waiting for them to call and give me the date.
I told them asap, we can't do it during respiratory season. 

Here is her x-ray
The picture on the right was taken back in 2008
the one on the left was taken last week.
They never did tell me the percentage of curve, 
but the surgeon said that surgery needs to be done with in the year.
I will be calling the Dr. to get the percentage of curve, I am curious as to what it is.

Also while there, we asked to have her right arm x-rayed too. She had hurt it a week before
and was still complaining about it, so as a precaution to make sure it was not broken.
It came back looking good or so we thought till I got a phone call a few days later from Dr. Marcy
Who said that the Radiologist and her sat and looked at the x-ray for quite some time trying to figure out what was not looking right. They could not put their finger on it but they knew something was not right.
So they called me and told me to wrap her arm to her chest with an ace bandage for 5-6 days and see if that helps. They said the bone did not look right. They could not see a break but that did not mean there was not one. Sometimes they don't show up for a while or ever.
So we put a bandage on her, which she HATES! Later the first day, she looked and me and said, 
"mom, my arm does not hurt any more"
Not sure if that was true or her way of saying TAKE IT OFF!
If it is still hurting next week, we have to go back up and have both arms x-rayed so they have something to compare it too. Heck for all they know it is just how Whitnee bones truly are. 
Still does not make it easy for her to get around, she can't drive her Walle because she is right handed.
So it has been a rough few days.
I will post later what we find out.

Cinderella's Grand Ball

Whitnee had the opportunity to attend 
Cinderella's Grand Ball.
She was soooo excited when I read her the invite. The first thing out of her mouth the morning of the ball was "I get to go to a Princess Party"
HopeKids did an amazing sponsoring this event for all the little Princess who deserve to have one day where they don't have to worry about treatments, therapies, etc.... they can have the spotlight on them and help them celebrate who they really are. PRINCESSES or Princes for that matter 
(yes there were a few of them there too). 

When we walked in the doors, they asked for Whitnee's name
and then announced her as 
Princess Whitnee from the Kingdom of Saratoga Springs
and then everyone applauded her arrival.
(it was really cute)
She was also given a beautiful necklace with her name on it.

We quickly went back outside to ride in the Carriage 
(the line was REALLY short-I don't think anyone really knew it had arrived yet).

 This amazing Carriage pulled up right behind me when we got there.
(Whitnee was more excited about the horses then anything else, she LOVES horses)!

Here we are in the Carriage, she thought it was pretty neat!

Next we were seated for dinner,
(she was so tired, I was not really thinking
when I took her to the pool early that morning for
a few hours-she fatigues really fast).

Our yummy dinner, she even got her OWN plate.
(it was really good)

Yummy cupcakes for dessert!
Whitnee really liked these 
(they were strawberry).

After we ate, Whitnee got to go get her picture taken Professionally
in her Princess attire.
Can't wait to see how they turn out.

While getting her pictures taken they announced the
 then they came out to the courtyard where we were.

Whitnee with Belle, Jazel, and Pocahontas
(these 3 actually came over and found Whitnee rather 
then us finding them).

Whitnee and Tinker Bell
(I love how she watches them) 

Jasmine and Whitnee

Mulan, Whitnee, and Rapunzel

Sleeping Beauty (Arora) and Whitnee
(her favorite, but I think Arora now has
some competition with Rapunzel)

Cinderella, Whitnee, and the Fairy God Mother
(I love how excited she is here)

Whitnee and Cinderella

It was an amazing night! 
Whitnee's clock struck 12 early,
when she started having a melt down waiting for the Princess
class (how to curtsy, etc...) and the dance with the Princesses.
she left with all of their autographs and great memories to tell 
Daddy, Kort and Nic. 

Whitnee sound asleep on the way home.
time 6:30 p.m.
Thank you HopeKids for a wonderful evening!