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





   

   
   
2011-02-23 18:17:39.0

We made it - - to New Jersey!!!

Suzy and I arrived this afternoon and we are staying for the whole week. We are participating in a physical therapy program.

Yes - it's a new state for us and our travels. (never been to new Jersey)
yes - it's a new therapist. (never seen Azriel before)

But - "I'm flying on a wing and a Prayer" and a whole lot of HOPE.

And - I'm trusting my awesome friend, Marcela, who has flown across the country with her son to work with this man.( You can read about them at www.prayfornathan.org.)
Plus - another friend of mine sings Azriel's praises.

So - I felt that we had to try him out.

When I think of all the places I have taken Suzy in the 3 years since she aquired brain damage - Dominican Republic, New York, North Carolina, Florida, Mexico, California, Northern Virginia, Richmond,........
I get a little sick.

I can't help but wonder -
Am I chasing unattainable goals?
Am I reaching for the impossible?
Am I just dreaming?

And, when do I stop?

For now - I'm keeping on keeping on!
And I'm on my knees praying. I know God has been guiding me. And I know He will let me know when it's time to stop.

So, I'm going to sleep peacefully tonight knowing that everything is the way it's supposed to be and that Suzy and I are just fine.

Have a beautiful week.
Peace,
Whitney

Happy 4th BIrthday Suzy 2011-02-13 14:21:59.0
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Today Suzy turned 4 !!


Happy Birthday Suzy.

We can't believe it's been 4 years since you joined our family. You have blessed our lives with joy.
You have been through so much in your 4 little  years; yet you remain strong and spirited.

We love you very much,

Your devoted family
changes... 2011-02-03 16:27:45.0
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This week we received some sad news -
Our beloved Jenny gave her 2 week "notice". She is moving on to bigger things. We have had her as our 'nanny' for 2 years. Anyone who has read our blog knows how wonderful she has been to our family. She has been Suzy's best friend. She has been my biggest helper. She is family.
Jenny has a college degree in Recreation Therapy; and she has been offered a job as a therapist at Virginia Beach Psychiatric Center. I am proud of her, and I want her to 'spread her wings and fly'.......but we will miss her terribly !!!!!!

So now I have to face finding someone new.
I realize I have been lucky. Many of my special need's mommy friends have had several different helpers in the time that I have had Jenny. (Most moms who have a child who has special needs has some kind of help - a nurse, an aide, or a nanny. It is SO SO difficult managing all of the work that goes into taking care of a special child without some kind of help).

Here's what I am looking for:
a female, young and energetic,
compassionate and reliable,
to work about 20 hours a week,
to pick Suzy up from preschool 4 days a week at 11:45,
feed her lunch,
take her to therapy everyday at 1:00,
play with her, love her, stretch her, take her for walks, feed her a snack,
stay until 4:00,
and be Suzy's new Best Friend.

So I fretted....and worried.....and stressed out.... and then I prayed......

and guess what?

Out of the sky fell an angel! 
And her name is Sam.
I interviewed her this morning.
And then I hired her!
We are excited.

This was so much easier than I had anticipated.

I learned a lesson:
"Walk by faith, not by sight, trusting Me to open up the way before you."

Now I will try to "trust" more and "worry" less.

Peace,
Whitney

2011-01-29 13:01:24.0
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She was not allowed to eat breakfast
plus -The morning at Children's Hospital
plus -Sedation medication
plus -14 Botox injections in her legs
plus -After effects of sedation medication

= one irritable girl     cry_smile

"Hip Hip" 2011-01-25 16:46:24.0
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"Hip Hip" hooray.
                    

Suzy's x-ray results came back.

The good news is:
There is NO change in her hips!!! They have stayed the same for over a year now. Her right hip still looks great. And her left hip is still holding at a 40% subluxation. So, we just continue to keep an eye on it.

The great news is:
The scoliosis that she has had for a year is now GONE!! There is NO LONGER A CURVATURE of her spine!!!  How cool is that?

Thanks for the prayers!
Life is good.