Join the Fight to END SMA!

This is the disorder our beautiful daughter has, I lost 2 cousins to this horrible disorder. Would you please take a moment and watch this short movie and then please sign the petition, and give our daughter the opportunity to live a better life. Thank You from the bottom our hearts.

I thought I would post what we have been up to in the last 7 weeks of being home. Other then Whitnee catching everything like pink eye, ear infection and now all of kids have sinus infections, we are all doing well. School is in full swing and they are starting to bring home the bugs (the sinus infection) we are really hoping this is not a precursor to the up coming season a head of us. Unless they are getting it all out of their system before it gets to bad, which I can handle.

Nate actually got to take Nic 4 Wheeling this past weekend and they had a blast, Nic got to drive his own 4 wheeler this time and did really well, I do have footage but will have to post it later.

The Squirrel

So I had a gas leak in my car, that was causing a really bad smell of gasoline to travel up inside the car. So Nate dropped the gas tank and this is what almost fell in his face. I am not sure how it got up there since we don't have Squirrels at my house, my guess is that it was from PCMC but who knows. It must have gotten stuck and tried to bite it's way out and drowned. SAD and YUCKY!




Hogle Zoo

This was our "staycation" this year. It was a perfect day, cloudy with a chance of rain, cool and hardly anyone at the zoo! We loved this visit, it was way cool!

The Gorilla,
Nic took this picture of his favorite animal.


The Penguins
Whitnee's favorite animal,
Kort's were the reptiles but those pictures were on her camera. (oops)

Kort and Nic on the Carousel

Mom and Whit
(she threw a fit when it stopped- I on the other hand
was very happy for it to stop)

Mom trying not to PUKE
(I get motion sickness)

The AWESOME Bird Show

A Falcon (I think)

A Fusa from Madagascar, they eat Lemurs and sleep a lot

Our Kiddo's

This is how we shop
I love having a little helper.

Whitnee's Sleep Study

Whitnee getting her sleep study done at PCMC

Here she is getting all the probes put on her head

all finished before bed.

First Day of School
Kortnee 12 yrs


Nic 9 yrs

Man they grow up way to fast! I wish I had a rewind button
sometimes. I am soooo proud of them and love each one of them sooooo much.

Home again Home again.

We finally made it home! 46 days in the PICU is way to long for anyone. I did quickly learn that we were by no means the longest one there either, there were many heart babies there who had been there much longer so we were grateful to come home.

Whitnee was not okay with everyone running through
the sprinklers with out her so here is Bro and Sis
helping her run through the sprinklers.
As she put it "I wet, I cold"

The day before we came home (I think)
finger painting everything as you can see.

I can count on one hand how many times whitnee
has done tummy time in her life. This surprising enough
is the second time in the hospital and the first time not
complaining. (Thank you Barbie 12 dancing princesses)

Whitnee doing her breathing treatments, very happy
to have her mask off.

Not much to do in a hospital when you are
visiting, so Nic is listening to his MP3 Player.

Kortnee finger painting with Whitnee

The girls finger painting.

Whitnee fell asleep coloring her picture.

Whitnee right after extubation (removing the
the breathing tube). Not to happy about the
breathing treatment she had to do.

This Is Jennifer one of our favorite nurses, she also
became a part of our family while we were there
The last time we saw her as she was leaving her shift for the
day, Whitnee looked at her and said "You Stay"
It just broke her heart, it was way cute.


We are so glad to be home, Whitnee is doing really well on all her treatments, which we are doing every 3 hours. Yes we are all sick of doing them but we have about 20 more days to go. Kortnee and Nic sure have been a great deal of help, they now do her CPT and Cough Assist and they are really good at entertaining her while during the treatments.

WE ARE SO THANKFUL FOR ALL OUR FRIENDS AND FAMILY WHO CAME TO VISIT, CALLED, HELP WITH MEALS, FOR THE SERVICE DONE, AND FOR ALL THE PRAYERS GIVEN IN OUR BEHALF. SHE RECOVERED AND HAS DONE SO WELL BECAUSE OF IT.
THANK YOU SO MUCH.

27 Days and Counting

We Started out our summer in the PICU up at Primary Childrens Hospital. Whitnee ended up with an awful virus called the Parainfluenza3 (croup) basically the worst kind you can get, and is compared to RSV. With her SMA it really hit her lungs hard. She has been intubated 2x this stay and so far has had one surgery.

Here she is on our first day in the ICU.

This is after her 2nd intubation
with her most constant and favorite Nures
Jodie.

This is bath time, she is getting her hair washed
and decided to put her hand in the water to splash,
to me it looks like she is at the spa. lol

They finally gave her permission to sit in
"EVA" her wheelchair, as you can tell she
is very happy about that.

This is Pet Therapy that comes to visit her, it
helps to boost her spirit. This is one of the dogs
his name is Elliot

This is Music Therapy that comes twice
a week and boy does she love it.

She loves to dance while they sing to her.

They are so good with her.

Family visit
(Kort is at girls camp)

This was way fun, they asked Whitnee
if she and her brother Nic (kort was at camp)
would paint a ceiling tile.
So here they are painting.

Finished project now hangs in the PICU
outside her room.
They did a great job.


We are taking it day by day waiting for her lung to pop open,
it has been and is a very slow process.
Thanks to everyone for all your support, prayers and visits we really
do appreciate it!!!