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





   

   
   
Anniversary 2009-04-18 08:48:01.0
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11 years ago today I married my best friend, Chris.

I knew he would make a great husband.

I knew he would make a great daddy.

For 10 years he proved to be just that - a great husband and daddy.

But, for the past year, he has proven to be the most amazing, patient, loving, selfless and supportive husband and daddy that God ever created.

I love you, honey.

Happy Easter 2009-04-12 15:57:29.0
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Happy Easter!  

Today is the perfect day to remember God is Good!

We are counting our blessings.

We are thanking God  -

for His Son,

for our daughters,

for our family and friends,

and for our happiness.

Our family was invited to have lunch at a very dear friend of mine's, Meredith. (who happens to live here in Charlotte).  Thank you Meredith, John,  Emily, Sarah, and Jake for letting us spend Easter with your family.

We pray that today was a special day for you, too.

Peace,

Whitney, Chris, Gracie, Maggie, and Suzy

2009-04-09 07:37:58.0

Greetings from NC.

We're still here, and doing well.

Actually, I'm sick!  Sick of being here (away from home), sick of getting into an oxygen chamber twice a day for 3 hours (it's hot and boring), sick of encephalitis and brain damage (and what it's done to my baby girl), sick of fighting for recovery, sick of spending all hours of the day on Suzy (her therapies, doctors, appointments, treatments, issues, and care), and sick of feeling like I am losing my mind.

And I'm tired! I haven't gotten a good night sleep in 14 months. Suzy is still up for hours each night. It's cruel - to care for a handicapped child all day when you can't get some decent rest all night.

So, I am SICK and TIRED!!!  Aren't you glad you checked in on us?

The good news is that Suzy is doing great. She is handling the treatments beautifully. She has also made 2 nice improvements over the past 2 weeks:

1. She is responding happily to toys and books. She will smile at the story and actually LOOK at the pictures in the book! She also has a few favorite toys now.   TOYS (not just PEOPLE) make her laugh!  This is such a good cognitive step.

2. She can drink from a big girl glass. When she sees me or Nana drink soda or coffee, she gets all excited, and opens her mouth, saying that she wants a sip. So, we started giving her sips. And now she can gulp down milk and juice like a big girl.

So, we are proud. And I realize that even though I am sick and tired, it is all worth it. The travel, the cost, and the energy for all of the treatments are slowly paying off. For this - we are grateful!

And the other great news is that MY OTHER 2 WONDERFUL CHILDREN will be in NC with me tonight! I have missed them so much.

Peace,

Whitney

2009-04-03 15:35:00.0

Hello from NC!  Suzy and I have been here for 5 days and we've already been to the ER!  Anyone surprised?   (not me)

WHITNEY:

Problem - I suddenly had shooting pain up and down my knee. I could barely walk.

Procedure - X-Ray and ultra-sound of the 'leg vein'.  Nothing was found on these 2 tests.

Diagnosis - Knee Pain

Discharged with -Rx for Vicodin (for pain) and Crutches (so I can look like a dork!)

SUZY:

Problem - fussiness

Diagnosis - Ear Infection

Discharged- with an Rx for an antibiotic

FINAL OUTCOME - My angel mom ended up staying an extra day to help take care of the Sick and the Lame. We are both much better.

Thanks for checking in on us. And thanks for all of the wonderful birthday wishes I received today! You guys made turning 40 painless.

Peace,

Whitney

Good Bye Va. - Hello NC 2009-03-28 11:47:30.0

Good Bye Virginia - Hello North Carolina!

Suzy and I are leaving tomorrow (Sunday, March 29) for Charlotte, NC for 3 weeks. She will be doing 40 more treatments of Hyperbaric Oxygen Therapy. She gets 2 treatments a day, for 1 and a half hours each time. We will rent a small apartment right behind the clinic. My fabulous Mom is driving down with us and staying for 5 nights to help get us settled. 

Jenny, Suzy's helper, is coming down the following week for 4 nights.

Chris and Gracie and Maggie will be down for the third week (it is the girl's Spring Break).

So, I have plenty of company and won't be too lonely. However, I will be celebrating my 40th birthday with just my little Suzy!  And my 11th wedding anniversary!  Thankfully, the family will be down there for Easter.

It will all be worth it if Suzy gets some more HEALING!!

The past week was busy for us. Suzy had her first appointment with the Wheelchair Clinic at the children's hospital!  She was measured and fitted for a wheelchair. It was a sad and stressful event for me. I never thought I would have a child in a wheelchair (but then again, who does?)  I hated having to admit that Suzy will be better supported in a chair that is designed for her than a regular stroller. However, the wheelchair actually looks a lot like a regular stroller, just with more supports and 'gadgets'. It even has a tray that snaps to the front for her to work on.  It takes 3-4 months for insurance to approve the chair and get it to us........so I'll post picutes of her in in when we get it (sometime in July). Insurance approval stinks. 

On Friday Suzy was evaluated for a summer program for disabled children called "Pediatric Life Skills". She PASSED!! So, we will be able to participate!  I'm excited.  It is a 5 week course, that runs for 3 hours each day. It is basically an intense physical therapy program to help her reach new skills. She is grouped in a class with 4 other children who are about the same age.

So, I am off to pack and get ready for our trip.

I pray everyone is doing well. Thanks for checking in on our family.

Peace,

Whitney