JOURNAL

Do you have a 'very Special Child'?
Then you might be interested in my
TAILS!!


I created TAILS on Suzy's SHIRTS.
It works for us ~ maybe it will work for you, too.

Remember when your kids were babies?
And they all wore ONESIES?
I loved onesies for all 3 of my babies -
the shirts stayed tucked into the pants,
their tummies stayed covered, and warm, and protected,
the onesie kept the shirt from "bunching all up in the back" when the baby was in a stroller or carseat,
there wasnt' a bunch of material gathered around their boobies when they were rolling on the floor,
they just looked neater.

Suzy is pretty much still like a baby - AT AGE 5 - and STiLL NEEDS ONESIES.
So, I created a way to make EVERY SHIRT SHE WEARS A ONESIE by sewing on a TAIL!!

I have done this for 2 years, to every shirt she has, and it's very easy!!!

For every shirt, you need one baby onesie. Cut the bottom 1/3 off the onesie, cut off the sides, and sew it onto the bottom of the shirt.

Click here for DETAILS and PICTURES.


http://www.babyjellybeans.com/web/do/site/photo?ID=723096





   

   
   

Suzy's Summer May 20, 2009

Suzy's Summer -

Suzy has a busy (and hopefully, productive) summer planned !! We have her participating in 4 exciting treatments/therapies.

1. "Pediatric Life Skills" - this is a summer program for disabled children. Suzy's class will be using a form of therapy called Conductive Education. The program is 5 weeks long, 5 days a week, for 2.5 hours each morning. Mommy, or Nana, or Jenny will take her and stay with her.

www.pedlifeskills.org

2. M.E.D.E.K  Therapy - Canada,...HERE WE COME!!! Suzy, Nana and I will be traveling to Canada for 1 week in July. We are SO EXCITED!! Suzy was accepted to be seen by a MEDEK "guru". MEDEK is an intense form of physical therapy. Exercises are developed for Suzy which will specifically strengthen her core, neck, and shoulder muscles. These muscles are vital for head control, sitting, pushing up, standing, and crawling. The 'guru' (Ester Fink) will teach us the exercises to do with Suzy twice a day. Once Suzy has mastered these exercises (over the course of 4 months), we will return to Canada to be trained in the next set of exercises.

www.medek.ca/

3. Stem Cells - On June 25th we will be traveling to the Dominican Republic for our fourth treatment of stem cells.

www.medra.com

4. Hyperbaric Oxygen Therapy - Suzy will be put into our HBOT Chamber every day this summer for 1.5 hours!!!

All of this is GOOD NEWS! We are blessed to have these opportunities to try and help Suzy recover. We are excited to see where she is in her skill levels come September.

...the BAD NEWS is that none of these 4 treatments are covered by insurance or Medicaid. The total cost of Suzy's Summer will be $23,500.00 !!!!!!!!!!!! Chris and I obviously don't have that kind of money.   - Which brings us to my next bit of news. Our Second Annual Bikers For Booze Fundraiser will be held on June 7th!! Please click on the Fundraiser page to see details. This year should be bigger and better than last. We would love to see you there!!!

Peace,

Whitney

Happy Mother's Day May 10, 2009

I love being a mom!

When I was little I wanted to grow up and "be a mommy."

I got pregnant right after we married! I couldn't wait.

9 years ago I had Gracie. I was thrilled. Gracie is soft and sensitive. She is gentle and beautiful. She cares about people and animals. She makes the world a better place.

7 years ago I had Maggie. Maggie is full of spirit and smiles. She is fun and funny. Maggie has a heart as big as the moon. She makes us happy!

2 years ago I had Suzy. She was perfect. She was easy, and laid back, and smart. She brought joy to our family.

All of my children have taught me about life and how to be a better person.  This year, though, it is Suzy who has taught me the biggest lesson. She has taught me about unconditional love!

I always knew I would love my children no matter what. This year has proved that to be true. I have a child who is up for hours every night. .....who can't hold a toy and entertain herself.....who is unable to focus enough to pay attention to T.V.... who can't even hold up her own head......and who will be dependent upon me for the rest of her life. .........and yet.....I end every day amazed at how much I truly and passionately love this little girl. I LOVE HER UNCONDITIONALLY.

This unconditional love is why a mom continues to love her son who is sitting in a jail cell for burglary.

.....or love her daughter who is pregnant at 16.

.....or love her child who has dropped out of high school and is addicted to cocain.

It's maternal instinct. It's the passion we have for our children. It's why we, as moms, continue to fight so hard to make our children be the best that they can be!

Every mom will be tested sometime in their career. Every mom will have the opportunity to decide to love their child no matter what.  And then that mom will receive the gift of knowing that she truly loves her children completely, tirelessly, passionately, and totally UNCONDITIONALLY.

Thank you, Suzy, for that gift.

Happy Mother's Day to all of the incredible moms.

Peace,

Whitney

Suzy's Splints! May 03, 2009

All is well here. Suzy is doing great this week! Yesterday she had on all 3 of her 'splints' and I was taking pictures of her. I thought I would share them. She looked really cute.

Suzy has 3 types of splints. We try to put them on her for a couple of hours each day.

1. AFO's - Ankle/Foot Orthotics - These splints are worn instead of shoes to keep her feet in proper allignment. Her brain injury causes her feet to 'twist and roll'. Keeping them stretched to the proper position will enable her to walk one day!! Without AFO'S, her feet and ankles could lose their complete range of motion and cause permanent deformities. (She does NOT like wearing these.)

2. Hand and Arm Splints - These keep her hands opened (not fisted) and they stretch her arm 'supinator' muscle. Her arms tend to roll inward. It is almost impossible for her to put her palms UP, towards the ceiling. For example, if she could clap (which she can't), then her thumbs would smack into each other instead of her palms. However, these are working very well and already causing improvements!!

3. Trunk Vest - She wears this to help stabalize and support her trunk. This stability allows her to better concentrate on holding up her head!! She doesn't mind wearing this at all.

She is our cutie-pie. And she is QUITE THE TROOPER!

The pictures are under the page "Suzy's Splints".

Enjoy, and peace,

Whitney

hyperbaric oxygen chamber April 26, 2009

Well......we did it!

We had a Hyperbaric Oxygen Chamber installed into our home!! It was delivered on Friday, and a technician with the company flew in and spent Saturday with us. She set the chamber up and trained us on how to use it. (It is a 9 PSI chamber which takes Suzy to 1.7 ATA's.)

The chamber is smaller, and hotter, and darker than the one we use in NC,.....but it is here, and I am HOME. I took Suzy for a 90 minute dive this morning, and then got out and spent time with my girls. I took them all to Target and then off to get Ice Cream!

We all agree that Suzy is really benefitting from her Hyperbaric treatments. She has completed 104 "dives" (or treatments) so far, and she continues to make progress every time we go to NC. So, we all felt that she MUST continue doing hyperbarics. It is difficult to drive 6 hours away, and stay in an apartment, and be without the family for so many weeks, and it seems that we will be doing this for a few years..... so, we are hoping that having a chamber here will prevent us from having to do that so often.

The negatives are: Suzy must wear an oxygen mask in this chamber. In NC the entire chamber is flooded with 100% oxygen.  Home chambers do not do that. Room air is sent thru a concentrator, and concentrated to 96% pure O2, and then sent through a hose into a mask. Suzy did 2 dives today. So far she isn't thrilled with the mask. Other negative: this chamber can't take her to as deep of a pressure. She went to 2 ATA's in NC, and can only go to 1.7 ATA's here (however, that should be enough for brain recovery)!!

So, we have the chamber as a rental. We will rent it for as long as we can afford. And we will evaluate to make sure she is getting as much benefit as she did from NC.

We shall continue The Fight!!  Chris and I are determined to not leave any stone unturned or any road not traveled!   Sometimes I wonder: "are we CrAzY??"

(i added 3 pictures - click on HBOT at home)

Oxygen Anyone??

Peace,

Whitney

April 21, 2009

everything will be okay

in the end.

if it's not okay

it's not the end.