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





   

   
   
2009-02-06 17:41:56.0
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Unfortunately, we met with Suzy's surgeon this week, and it  was decided that she WOULD need the surgery to close the hole in her stomach. We have scheduled it for Wednesday, the 11th. It should be a simple procedure in which they cut a small oval shape around the holes, both in the stomach wall itself, and the hole in her skin. The surgeon then closes both openings with dissolving stitches.

While she's on the operating table, her Rehabilitation Doctor will also be present. She will give Suzy 10 shots of Botox. Suzy will receive the shots into the muscles of her ankles, her hamstrings and her triceps. The Botox will slightly paralize these muscles, which will enable the apposing muscle to work more efficiently. Hopefully, these injections will enable Suzy to bend her elbows with less resistance, and keep her feet flat instead of pointed.  

So, it should be a fairly easy procedure, and we will not have to spend the night! We are excited to finally get the stomach hole closed (cottage cheese came leaking out onto her P.J.'s tonight). And we are excited to see what the Botox will do for her.

Suzy's Physical Therapist was able to get approval to see Suzy 4 times a week!  Hooray for Karen Voogt. Karen feels that Suzy is ready to really start WORKING OUT! We simply ADORE this wonderful lady.  We feel so blessed to have her in our lives.

Have a wonderful weekend.

Peace,

Whitney

2009-02-02 13:09:59.0
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I just want to take a moment to brag about how WONDERFUL my other 2 girls are - Gracie and Maggie!!

They are SUPER SISTERS!!!  They are patient and loving with Suzy. They are kind, and silly, and helpful. They  have taken this difficult situation and turned it into something positive.

On Sunday they took Suzy outside to play. They pulled her around in the wagon, and drove her down the street in the Barbie Jeep, and pushed her in the stroller.

Suzy simply adores being around them. 

I posted pictures under - "Photos - outside in Feb."

Gracie and Maggie - thank you. Daddy and I are so proud of you.

Peace,

Whitney

2009-01-31 14:09:56.0

Why, oh why, did I bother writing that we are finally all healthy? I must have jinxed myself.

We had Suzy back to the pediatrician this morning. She was up ALL NIGHT LONG, crying, and just miserable. Poor baby girl.

She is back on an antibiotic.

The good news? - Tomorrow is February 1st. We are officially done with January and February is GOING TO BE TERRIFIC.

We hope you have a fabulolus February, too.

Peace,

Whitney

 

 

2009-01-30 10:20:25.0

Hooray Hooray - Oh Happy Day! Everyone is finally healthy at the Booze household. We hope your family is healthy, too.

Our concern for Suzy right now is the hole in her stomach. The feeding tube was removed almost 3 weeks ago. What is left is a hole in the stomach wall and the skin. (It's like an earring hole, if you will). The hole is left to close up on it's own. -80% of all feeding tube holes will close up. However, Suzy seems to want to be the exception to EVERY rule!! Her hole is still open. We are giving it a few more days to see what happens. We will meet with her surgeon on Tuesday to see if she needs to have it surgically closed. Please pray that we don't need surgery. RIght now the hole still leaks a lot! She will drink 4 ounces of juice and 1 ounce comes out onto her clothes. It's quite annoying. Either way (with or without surgery) the hole will become a scar that looks like a belly button. How cool it that - 2 belly buttons! Which one will she pierce when she is a teenager??? decisions, decisions....

Besides that, Suzy is doing well. She is eating GREAT!! and sleeping BETTER! and she is more interactive, and just CUTER EVERY DAY.

We have re-scheduled our trip to the Dominican Republic for more stem cells to Feb. 27th!! We can't wait to get there. And she will go back into the Oxygen Chamber starting on March 30th.

Thanks for checking in on us.

 Peace, Whitney

1 year anniversary 2009-01-26 11:54:11.0

January 26

It has been 1 year!

1 year ago today our sweet, beautiful, precious baby girl was slammed with viral encephalitis and she suffered global brain damage.

1 year ago today her life was changed forever.

1 year ago today our whole family had to re-define the word 'normal'.

The doctors said,"We don't know what will happen to Suzy. Let's just get to the 1 year mark and see where we are. The brain takes a long time to heal. Her progress over the year will give us a clear picture of what her life will be like."

Here we are - 1 year! She is 23 months old, and has the skill levels of a 4 month old.

-she still can't maintain head control

-she can't sit up

-she has no balance

-she can't roll over

-she can't bend her elbows

-she can't hold anything

-she makes no purposeful reaching and grabbing movements

-she can't maintain eye contact

-she is not always part of 'our world' - there are times when she still drifts 'off into space' 

-she can't sleep for more than 4 hours at a time

-she can't change positions in her crib

-she won't sit in a car seat of stroller without screaming and posturing

So....what does this say about her future???? In another year will she progress another 4 months and have the skill levels of an 8 month old? And if she does, should we be grateful?.....................

I know......I know.......focus on the positive.

But, I am so tired of being sad, helpless, hopeless, exhausted and full of gloom.

By the way - our family is supposed to leave tomorrow for our trip to the Dominican.  Surprise-surprise - we had to cancel the trip. Suzy is too sick to travel. My other children are so dissappointed. They were really looking forward to some time away.

I'm not looking for pity. I just wanted to document the day.

Peace,

Whitney