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





   

   
   

Biking Booze April 08, 2010

Suzy loves the tricycle at her physical therapist's office! Karen, her beautiful PT, has been putting Suzy on a specially adapted tricycle for about a month. Suzy LOVES it. Basically, Karen straps her in, and just pushes her around, and Suzy enjoys the ride.

.....Until yesterday!!! Yesterday, Suzy peddled ALL BY HERSELF!  She did about 10 peddle rotations. She finally 'got it' and started to do it ALL BY HERSELF!

I wish I had been there to see her. Jenny and Maggie took Suzy to therapy yesterday; but they got PICTURES. They are going to get a video next week.

So, I will share them with you.

They are posted under: PHOTOS - Biking Booze

Now, I'm just trying to figure out how to get funding so I can buy her her own tricycle. They run between $1,500.00 - $3,000.00.  (Ridiculous, huh?)

Anyway, ENJOY!             Suzy sure did.

We leave today for Northern Va. for another intensive few days of ABM therapy. The girls are on spring break, so we're taking the whole family. (fun, fun way to spend spring break - sorry girls.) But at least we'll ALL be together!!

Peace,

Whitney

BUMMER April 02, 2010

 

 

 

Bummer -

We went to Suzy's Rehabilitation Doctor this week. She ordered an x-ray of her hips and spine to check for 'hip subluxation' (the hip pulling out of the joint) and check for scoliosis. These are 2 common problems with brain injuries. The spasticity (muscle tightness) slowly and continuously pulls on the bones, therefore causing the spine to start curving and the hips to pull out of the socket.

Silly me - I was hoping to AVOID these 2 problems.

Her spine IS curving. It's only 13 degrees; which is minimal. Therefore, we won't start bracing until it reaches at least 20 degrees. However, it shows that it has started to curve.

Her right hip looks great!

Unfortunatly, her left hip is 40% subluxed. Bummer. This has me the most concerned. The inner left thigh muscle is tight, and pulls inward, causing her left knee to rotate inward, which yanks on that hip! So, do we shoot Botox into that muscle to paralyze it? Do we do just maintain good stretching and 'watch it'? Do we do surgery (the PERCS procedure) on that leg? Any ideas? Our doctor just said we would 'watch it' and when it comes out we do a major hip surgery to replace it. OUCH!!! I've heard this is a major, painful surgery, with a crappy recovery for the kids.

Other than that news, Suzy had a GREAT week! Very alert, playful, healthy, and happy! She has been very vocal with cute noises. And she has loved all her therapy lessons this week.

I pray that you all have a beautiful Easter Sunday.

Blessings and Peace,

Whitney

Heaven's Very Special Child March 30, 2010

 

 

Heaven's Very Special Child 

A meeting was held quite far from earth,

"It's time again for another birth."

Said the angels to the Lord above,

"This special child will need much love.

Her progress may seem very slow,

Accomplishments she may not show.

And she'll require extra care

From the folks she meets way down there.

She may not run or laugh or play.

 Her thoughts may seem quite far away.

In many ways she won't adapt,

And she'll be know as handicapped.

So let's be careful where she's sent,

We want her life to be content.

Please, Lord, find the parents who,

Will do a special job for you.

They will not realize right away

the leading role they're asked to play.

But with this child sent from above

come stronger faith and richer love.

And soon they'll know the priviledge given,

In caring for this gift from Heaven.

Their precious charge, so meek and mild,

Is Heaven's Very special child."

 

Thank you, to my friend Denise, for sharing this poem with me. It makes my heart smile.

Conversation With Self March 27, 2010

Conversation With Self

Myself and I had a conversation:

 “I want to run away,” I said to Myself.
 
“Really?” asked Myself to me. “Where do you want to go?”
 
I answered, “Somewhere.  Anywhere.  Just as long as it’s far, far away.”
 
Myself asked, “Why?”
 
I answered, “Because I’m tired. Physically and mentally. I’m drained.
I want a break from everything. I’m sick of fighting for Suzy to get better. I’m exhausted from worrying about her. I’m tired of therapy and treatments. I’m tired of working my a$$ off.  I’m tired of ……suzy.”
 
Myself said, “That’s a terrible thing to say.”
 
I said, “I know, and I’m not proud. But sometimes that’s how I feel.”
 
Myself said, “Well….. you’re entitled to your feelings.”
 
I said, “I just don’t understand. I thought that if you want something really badly, and you worked very hard, and you were committed and patient, and ‘never gave up’, and ‘stuck with it’, and prayed faithfully to the almighty God..… I thought that you would eventually get it. I thought that was how life was supposed to work. I believed in that theory. I really wanted Suzy to recover, and I have killed myself trying. So - how come it’s not coming true?”
 
“But she HAS gotten better. She is so much better than when she first woke up from the coma,” Myself said.
 
“Yes, I agree. But when I look at her I can’t help but see that she is 3 years old; but she has the mind and motor skills of a 6 month old.”
 
Myself said, “True, but upon waking 2 years ago she was a 0 month old. So, in 2 years she has grown and developed 6 months! That’s a wonderful achievement!”
 
“Sure, it’s a great achievement for a brain injured child. But, it totally sucks in the real world. She still can’t DO anything! She’s bored and she’s frustrated. She’s cognitive enough to KNOW that she can’t do anything. We’ve tried so many therapies and interventions, and nothing seems to make any significant improvements. Is she not capable of getting much better? Is her brain so damaged that this is the way she will live the rest of her life?  Some things have helped a little bit. But I want MORE! I want her future to be rich with possibilities. I want her to be able to entertain herself.  I don’t want to entertain her forever. Couldn’t she at LEAST learn to COLOR, for God’s sake?
 
Myself said, “You sound like you’re not happy with Suzy.”
 
And I answered, “I am SO happy with her. I wouldn’t trade Suzy for THE WORLD!! I love her more than life itself. But, I would trade in every one of her disabilities.
I am angry at what her brain has done to her. I am angry that her body doesn’t work the way it’s supposed to.  I look into her eyes, and I feel that she is hurting. She wants MORE from her brain and her body. She wants me to help her………I am trying so hard......but I just haven’t been able to fix her…..My heart brakes for her and I am disappointed in myself. Mommy is supposed to kiss the boo-boo and make everything ‘all better.’ But this boo-boo is beyond me. I can kiss her, and love her, and keep her healthy and happy. But I am starting to realize that I will NEVER be able to make her 'all better.'  And this makes me very sad.
Up-Date March 21, 2010

We had a good week. Everyone is healthy again (thank goodness); and happy (for the most part).

The weather was gorgeous.

My mom, Nana, made it through  surgery on Friday (thank God) to have her thumb joint repaired. The joint was removed and replaced with a tendon taken from her forearm. OUCH! She's been having pain for months, and hauling around Suzy hasn't helped!! Actually, it's made it much worse.

We are so proud of Gracie. This week Gracie was accepted into the International Baccalaureate Middle Years Program starting in 6th grade. (She is is 5th grade now) .  She is very excited.  Only 50 girls were accepted from Va. Beach City. We are thankful she was one of them!!!

Maggie continues to be Suzy's best therapist. She loves to play with her, and she makes her laugh harder  than anyone else can.

Chris and I are leaving (with Suzy) on Tuesday morning to head to Black Mountain, NC. We are driving 8 hours to be with John Robson, the ABM therapist that we worked with back in February. I'm excited to see what he can teach her this time.  Gracie and Maggie (and the dog) will be staying over at Nana's and Poppop's. Thanks Mom and Dad. I'm not sure what we would do without you both.

Side story:

I was out shopping today with all the girls. We were sitting having ice-cream when a very nice lady said, "Oh, she is so precious."  (meaning Suzy). The lady told her friend, "She looks just like little "D".   The lady then said to me,"Your daughter looks like our friend's daughter. Her name is "D"."

I asked, "Oh, that name is familiar. Is her mom "B"?

They said, "Yes!"

So, we had a little chat, and I explained what happened to Suzy. They were very sweet. After they walked away, I started thinking. I realized that Suzy and this little girl, "D" are both very adorable.... but that's the ONLY thing they have in common. They don't look anything at all alike.  "D" has long, brown curly hair. Suzy has straight blond hair. "D" has big, beautiful brown eyes, and Suzy's are blue. "D" is 5 years old, and Suzy is barely 3.

They don't look alike. Then it  hit me - she thinks they look alike because they are both in a wheelchair. And they are both disabled. But this seems crazy. That's like saying that all Chinese people look alike. That's like saying that all girls under the age of 10 who can't walk   "look alike" and "remind me of each other". 

Handicapped children are just as unique as typical children. They all have their own personalities, and strengths,  and likes and dislikes. Children with  brain injuries share some common traits and challenges; but they are as different and special as the 'normal' kiddos.

Each special needs child deserves to have people get to know THEM, and who they are as a PERSON, and love them for their uniqueness,and look beyond their medical conditions..................... 

 And now, I'm hopping off of my soap-box and heading to bed.

I added some picture under: PHOTOS-the girls, March 2010.

Have a peaceful week,

Whitney