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





   

   
   
Great News! 2009-01-24 18:11:03.0

Did you see the front page?? or listen to the nightly news on Friday?

FIRST EMBRYONIC STEM CELL TRIAL GETS FDA APPROVAL

www.foxnews.com/story/0,2933,481825,00.html

We are very excited!! This trial is just the beginning!! This could get the ball rolling for more embryonic stem cells research. This particular study will be on spinal cord injuries. However, if it proves to be successful, it could lead to brain injury studies. It's a HUGE step in the right direction. It might not DIRECTLY help Suzy, but it could lead to more healing in the future, and it could possibly help a baby 10 years from now have a full recovery from encephalitis!! How amazing would that be????

I'm going to end this post with only this GOOD news, and I won't even mention that 3 of our 5 family members are PUKING today. (Chris, Suzy, and Gracie!  I guess Maggie will be tomorrow.) My house needs to be hosed down with Clorox and spray painted with Lysol.

I pray that your family is staying healthy this month.   

Peace, 

Whitney

2009-01-22 05:10:43.0

oh,  dear Lord,  thank you for helping me get through this week.    Thank you for not letting me run away, by myself, to a private island with a never-ending supply of frozen margaritas and nachos.

-Suzy and Gracie were at the pediatrician, both with double ear infections.

-I spent 24 hours hanging over the toilet bowl with a stomach bug.

-Suzy's feeding tube site continues to ooze liquid and blood and is NOT closing, which is causing her pain.

-The dog was at the vet with ruptured and infected glands.

-Maggie is trying to get over pink eye.

-My mom had  cosmetic surgery, and couldn't come over to help.

-Suzy wakes up every 2-3 hours EVERY night!

-Chris is having a difficult time healing from 'the worst ear infection' his doctor has seen in years.

Gracie's on med's.

Suzy's on med's.

Maggie's on med's.

The dog is on med's.

And everyone must be 100% by Monday because we are all leaving the country!  We are off to the Dominican Republic for Suzy's third stem cell treatment. The whole family is going this time.

sigh............... If life is a bowl of cherries, why does my family feel like the pitts?

Did I say that I wasn't going to whine in '09?....... I lied!

 

 

It's always something 2009-01-15 13:23:59.0
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CRAP !!!

Why can't anything ever go smoothly ???????

And what happened to 2009 being better ?????????????

So far, '09 just stinks!!!!!!!!!!!

Chris is on his way down to NC to pick me and Suzy up and take us home. Suzy's g-tube site looks lousy, it's painful and bleeding, and her surgeons back home want to see her tomorrow and fix it up.

SO, we have to stop doing her hyperbaric treatments. We will only get in 30 dives instead of 40 dives this month. But, I am happy to be going home. Gracie and Maggie have BOTH been home sick for the whole week, and they are really missing having mommy love on them.

A BIG "thank you" to Betsy Neal, who ran over to my house to take care of the girls for the next couple of days, until Chris and I can get back home tomorrow evening.(AFTER we go to the children's hospital to have this giant hole in her tummy fixed.)

Want to hear something gross? - Yesterday Suzy ate spaghetti-o's for dinner. A couple of hours later, I noticed that a few noodles had come OUT of her stomach THROUGH the feeding tube HOLE, and landed in her belly-button.   How funny is that??

See? I DO still have a sense of humor.

Hugs to everyone,

Peace,

Whitney

BACK TO THE E.R. 2009-01-14 17:35:46.0
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One step forward............one step back!

We are still in NC doing our hyperbaric treatments.  Jenny (suzy's amazing nanny)  is here helping me (thank God for Jenny - we love her!)

We spent the afternoon in the Charlotte ER. Suzy's "g-tube" (feeding tube) popped out last week, and I had to 'shove' it back in. I was met with some resistance.

This 'shoving' caused some deep irritation that didn't heal. Yesterday, it started bleeding internally and causing Suzy lots of pain. Her doctor's back home were planning on removing the g-tube next month anyway, so it was decided that we go to the hospital and have her feeding tube finally REMOVED!!!

We are THRILLED that we are FINISHED with the feeding tube!!!!!!

Yet, it was sad to see Suzy so miserable.

Now, we give the hole in her stomach 2 weeks to close up on it's own. If it fails to heal and close completely, we go to the children's hospital and have it surgically closed. Please pray that we won't need this surgery.

Suzy is much better today.

I posted some other pictures of the g-tube in case you have never seen one, and you are just curious.

Peace,

Whitney

Resolutions 2009-01-12 18:39:58.0

I have read:

"Parents attach to their children through core-level dreams, fantasies, illusions and projections into the future. Disability dashes these cherished dreams. The impairment, not the child, shatters the fundemental, heart-felt yearning. Parents of impaired children grieve for the loss of these dreams.

Recovering from such a loss depends on one's ability to seperate from the lost dream, and to generate new, more attainable dreams. Parents must face a challenging task - they must raise the child they have, while letting go of the child they dreamed of. They must go on with their lives and generate new dreams.

To do this, the parents must grieve. Sometimes the way broken parents of broken children get through this is to step into the dark and lose their minds, to cry hard, and just stop being  brave little soldiers for a while."

This is how I felt in 2008. I was just trying to survive.

But now it's 2009 - and I am going to resolve to move beyond these feelings.

My 2009 (Suzy) Resolutions -

1. LIVE for today, and stop worrying about how Suzy might be in the future.

2. LOVE her wholly and unconditionally for who she is RIGHT NOW!

3. LAUGH and enjoy the family, and appreciate all of the wonderful blessings that we have.

4. DREAM BIG!!!!!!

Thank  you to everyone who has supported and loved us in 2008. We made it through the toughest year of our lives, and we couldn't have done it without YOU!  I am SO grateful that '08 is over, and I am  excited to see how wonderful '09 is going to be.

Peace,

Whitney