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

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.



Evaluation March 24, 2009

Suzy had her "Yearly Evaluation" with the Early Intervention Program this week. (The Early Intervention program sets up all of Suzy's traditional therapy programs and helps coordinate the services that she can receive through the city.)

She was first evaluated on April 1st of last year when we were released from the hospital. The scores are based on the following functions - Cognitive Level, Social & Emotional Level,  Gross Motor Skills, and Fine Motor Skills.  Back then, Suzy scored at a "Newborn" Level (which is anything under 1 month old.)

It was then noted in her evaluation that Suzy did NOT start to make functional gains until about September 1st. Until then she was just too sick, and still trying to heal from the brain injury.

Therefore, her progress has been evaluated from just Sept. 1 until now. Today her scores come in at an average of a 5 month old.

I guess we can look at this 2 different ways:

1. Crap - Suzy is 25 months old, and equal to a 5 month old!!


2. Hooray - In 7 months Suzy has progressed 5 whole months!!




The Golden Years March 21, 2009

I ran into an aquaintance at the grocery store yesterday. We chatted for a minute in the cereal isle. She had her 2 and 4 year old with her. The adorable (and healthy) children were being "squirmy" and a tad impatient. They weren't thrilled to be grocery shopping  (but neither was I.) !!

Their mom seemed frustrated and said, "Augh....I can't wait for my Golden Years."

I smiled politely, and  said,"I better finish shopping. Nice to see you."

While driving home, I thought about her comment - "The Golden Years."  Why are the Golden Years supposed to be so golden? I imagine because our children are grown and out of the house, and we can sleep whenever we need to, we can enjoy a good book, our committments are lowered, we have less laundry and less dishes, and finally have some time to ourselves!    Sounds good.

Then I thought about Suzy. We don't know how far she is going to recover,... but odds are that she'll always be physically and mentally challanged. So, she'll probably always be our little side-kick!  Suzy will probably never live on her own. So, I guess we won't officially have the "golden years."  But, I'm sure there will  be lots of great years. So, I think I'll call them "The Silver Years"!!



March 19, 2009

Suzy has an amazing 'nanny' - JENNY!!

Jenny comes over about 20 hours a week and helps with Suzy. Jenny is adorable, kind, fun, sweet, energetic (23 years young), positive, and just AWESOME! She is the perfect fit for Suzy AND for our family. We simply love her.

Jenny helped me make a video of Suzy's story.  It is beautiful. I have added it to the website under - Video - Suzy's Show!

Turn up your sound.

Enjoy - "This Child of Mine"

Up-Date March 18, 2009

I just wanted to give a quick up-date to all of our faithful followers!

Suzy is doing really well the past few weeks. She is waking up 'perky' and happy and ready to play. She is eating well and laughing a bunch.

Lately she loves to listen to STORIES! Especially told by her Nana. So I bought a voice recorder, and Nana recorded herself telling a few stories. I play them for Suzy while she is eating in her highchair, or just hanging out in her exersaucer. Suzy will listen intently and even laugh at the APPROPRIATE PLACES. - AMAZING!!!

Suzy's new activity in Physical Therapy is to be suspended over a treadmill. She is in a harness, and the treadmill is turned on very slowly. Suzy will TAKE STEPS for 10 MINUTES!!  - Also AMAZING!

She looks so very cute walking along the treadmill. I posted a few pictures under PHOTOS-TREADMILL.   -Enjoy.

Have a wonderful week,



We're back! March 03, 2009

We are back from our Stem Cell Adventure!!

The mission was a success!!

Suzy received her third treatment of embryonic stem cells. She handled it like a pro. We were all so proud of her.

Now we need to PRAY PRAY PRAY that the cells get into her brain tissue and create some miraculous healing.

I have created a new photo page with pictures from the trip. Luckily for us, the stem cells are administered in a hot and sunny country. We had super weather. Gracie and Maggie had a wonderful time. Suzy really enjoyed being in the pools. It was so nice to be together as a family and relax for a few days.

Peace to you all,