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





   

   
   
2008-07-18 13:26:58.0

HOORAY!!!

We have FINALLY gotten to the bottom of Suzy's GI 'issues'. We switched to a NEW GI doctor (thank God), and he discovered that she had tested for an enzyme deficiency 2 months ago!!!!!!!! (We were never informed of this). She has very low sucrase and maltase enzymes, and therefore, can not digest sucrose (table sugar). Sucrose, or some form of sugar, is the 2nd ingredient in most formulas. This deficiency can cause "painful gas, bloating, diarrhea, and mal-absorbtion of nutrients." This explains Suzy's chronic discomfort and weight LOSS! !!!!!!!!!

We switched her to a sugar-free diet, and she is doing SO MUCH BETTER!!  -Bless her little heart.

Neorologically, she keeps trying to get better. We are very proud of her. Of course, Chris and I would like her to start holding her head up perfectly,sitting up on her own, holding toys, and putting things into her mouth. She still can't bend her elbows well, which makes her very frustrated. Hopefully, that will all come along soon.  We BELIEVE it will happen, and she will recover from this. We just have to be patient and wait for God to send us His miracle.

Right now we're just thankful that she feels better.

PEACE,

Whitney 

2008-07-05 11:29:55.0

Where is He?................. God is here!

When Suzy smiles,... God is there.

When Gracie and Maggie wipe away Mommy's tears,... God is there.

When a doctor says, "I care. Let me help.",... God is there.

When a restaurant full of family, friends, and strangers reach deep into their pockets to donate,... God is there.

When church ladies offer to come over and hold our crying baby,... God is there.

When I feel like I'm drowning in saddness, but I end up smiling,... God is there.

When I put my head on the pillow and feel that, "Life is going to be O.K.",... God is there.

When SUZY LAUGHS,... God is really there.

So, YES, God is here!

And yes, Suzy does appear to be getting better these past 4 days. Chris and I keep second guessing what we are seeing. She smiles easier, laughs more, here eyes are 'brighter', she is attempting to reach out, her trunk control is a little stronger, and she is learning to suck again.

Stem Cells? We believe so.

Peace,

Whitney

 

2008-06-27 09:57:58.0

Where is He?

I hold my sweet baby Suzy in my arms all day (she cries when she is set down. Why? Is she scared? ...sad?....mad?)

Her muscles are stiff. Her extremities posture into strange positions. Her neck arches to the side. Her body writhes in discomfort. She becomes very rigid. Then....she becomes loose. Her head flops onto her chest. She bends at the waist.

She vomits 6-8 times a day. She has diarreah almost the same amount. Her throat burns from the acid. Her tongue is covered in fuzz.. She can no longer suck a bottle. All of her medications (that are supposed to make her better) have difficult side-effects.

Her movements are trapped inside a body that she can't control. Her thoughts are trapped inside a mind that has been badly damaged. What is she thinking? What does she feel? Does she feel safe? Does she realize what has happened to her? Does she know how much we love her? Will she ever come back to us?

I am her Mommy. I am the one who is supposed to make her better. I cry as much as her. I feel so helpless.    People all over the world are praying for her, and yet she is still so sick.    And so I ask:

Where is He?

2008-06-18 15:48:12.0

Hooray! Suzy is feeling better. Thank you to all of the well-wishes and prayers. She has had a good week. She hasn't thrown up since Friday. Her head control is improving.   Her eye contact and 'awareness' are better.  Her facial expressions are cuter.

We had a fun morning. The news crew was here all morning filming the family. They are doing a story on Suzy. They interviewed us about what happened, and what we have been doing to help her recover. The reporter is interested in the  'stem cell' angle. The T.V. station would like to follow her this year and watch her improve. The story should air sometime next week. We will let  you know when we get the final date and time.

Tonight we begin our second round of Magnetic Therapy. We will spend about 21 nights at the clinic. We will complete another 200 hours under the magnet. 

I'de like to say CONGRATULATIONS to my sister, Christy, and her husband, Chip, for giving birth to Cobe Davis Rudolf. He is simply adorable!! Mommy and baby are doing great.We love them all very much.

Peace,                                                                                                  Whitney and Chris

 

 

2008-06-12 18:28:35.0

Our little Suzy isn't doing very well. She has been miserable for the past 6 days - vomiting, diarreah, muscle spasms, posturing, crying, poor sleeping, lethargy, etc. We took her to 2 different doctors today (that's back and forth twice to the children'shospital.)  Her GI doctor determined that she has another bacterial over-growth in her small intestines, which can cause cramping and other GI 'issues.' She was put on an antibiotic for that. She has also lost a few more pounds, and the doctor blames her worsening reflux for that. We have decided to have a procedure done next week at CHKD that will turn her G-Tube into a J-Tube. An extension will be hooked onto the feeding tube which will allow her formula to be put directly into her small intestines and bypass the stomach. This should alleviate the throwing-up. Maybe she can start gaining weight.

We also put her on a new drug (Baclofen) which might help control the posturing and muscle spasms. These are brought on by her brain damage and can be very annoying and frustrating for her, and even somewhat painful. Her head was also measured, and we found out that no growth has occured all year (this is indicative of the brain damage). This particular doctor (Dr. Shelton) told us again what we didn't want to hear, "Suzy is probably as good as Suzy is going to get. She might make some small gains, but don't expect much." 

It just hurts SO much to be told that once again.

But, this is the reason we are getting stem cells. We are still confident that stem cell treatments over the next year will bring about healing for her.  Please help us by praying that these stem cells are her miracle.

Peace,                                                     Whitney