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





   

   
   

Run-Swim-Run! July 17, 2011



This morning Chris and Suzy ran in the "Allen Stone Run-Swim-Run" race here in Virginia Beach.
What is that? Allen Stone is a navy seal who died in 1999 fighting for our country. The race is named after him and in honor of all of the seals who dedicate their lives to our freedom.
The Virginia Beach Team Hoyt is a group of volunteer runners who push kids in wheelchairs in races all over the east coast.
Chris is a member of Team Hoyt who has run in the past, but never with his own daughter - until this morning.

Team Hoyt's motto-"We Run For Those Who Can't"

This  race involves RUNning down the beach for 1 mile. (the handicapped children are in beach buggies).
Then SWIMming back up the beach for 1 mile. (the kids are being pulled in a boat!!)
Then RUNning down the boardwalk for 5K. (the kids are in jogging strollers). 
 
This morning was awesome! Chris and a navy seal (Reed - who was assigned as Suzy's escort) pulled Suzy down the beach.
Maggie was in the beach buggy holding Suzy.
Then Gracie got in the boat and held Suzy. Our beloved Jenny (a college swimmer) was to help swim Suzy & Gracie back up the beach.
Chris then pushed Suzy in a 5K down the boardwalk and Reed ran along to help.
The beach part was perfect!!  -Suzy loved it.
The boat part - not so good. As the team was trying to push Suzy and Gracie thru the breakers a large wave grabbed hold of the boat and flipped Suzy & Gracie flipped out into the white caps.
Reed reached down into the surf, grabbed Suzy, and held her high in the air yelling, " I GOT HER!"
I was on the beach having a mild heart attack.
Suzy started balling. She wanted nothing more to do with the boat. They ended up pulling her back up the beach in the beach buggy.
Then she was put into her jogging stroller and enjoyed the 5K run while happily sucking her fingers.

Team Hoyt is amazing. They are dedicated, generous, and caring. We are so blessed to have these athletes. The morning was amazing.
It was pure joy watching all of these special kids have SO MUCH FUN.
I love living in Va. Beach.
Thank you, Team Hoyt, for caring about our kids.
Thank you, Gracie and Maggie, for holding your sister so she could participate.
Thank you, Chris, for being such a super daddy.

You MUST click on the above photo to see the Group Shot FULL SCREEN!

 Enjoy ALL of the rest of the pictures of ALL these incredibly special people here -http://www.babyjellybeans.com/web/do/site/photo?ID=681462

(PRICELESS)











water floating! June 30, 2011
Several people have asked me about the neck float Suzy was wearing in a recent FaceBook picture. I LOVE having Suzy in the water (it's SO good for her); and she LOVES it! It's a Win-Win situation.
So here's our info for our Water Therapy Program:

(The pictures I'm refering to can be found under: PHOTOS-Water Therapy Summer 2011.)teeth_smile

The purple neck float came free with a baby pool I ordered from Dino Direct.
You can order it on Dino Direct at:
http://www.dinodirect.com/swimming-pool-inflatable-square-baby-toy.html
 The pool was only $28.00 but shipping was $30.00!
The pool is a great baby pool - taller than any small pool I could find around here. 



You can also order the neck ring by itself here:
http://www.dinodirect.com/neck-collar-float-ring-baby-swimming-bear.html
It's $33.00.  
 
Last year we used a (very) similiar neck float from WaterWay babies found here:  http://www.waterwaybabies.com/contact-us-order/
It's $35.00 plus shipping.
                                                                                               Both Neck Rings hold Suzy up quite well. It looks strange, but it really works.
She can be independent in the pool and move around. She is FREE and she LOVES IT!!!!!!!

This summer we are going on a couple of vacations, where there will be bigger pools, and lots of water stuff. I was looking into getting her something a little more 'secure'.
I discovered this Life Jacket (the Lj-A model) :
http://www.pfd-a.com/#products
It's made especially for handicapped children, and goes securely around the neck, but then wraps around their torso and buckels under their legs. It is made to keep the child VERTICLE in the water. I think I love it. And I want to order it.... but I haven't done it yet because of the price tag. The cheapest place I could find to order it was here:  http://allsourcedepot.com/Store/index.php?route=product/product&product_id=68
It's $190.00 !!!!tounge_smile
Does anyone out there have this and use it? How do you like it?
  
While the pool we ordered was fine; we still wanted a bigger one. So we went to Wal-Mart and got the pool pictured in the photos. And we LOVE it.
It's the 8' Summer Escapes Pool. It was $49.00.
Here's why we love it: it was easy to set up.
And it came with a filter that REALLY WORKS! We run it all the time, and when I opened the filter to clean it out after 6 days it was filthy!! It was full of red iron, sediments, bugs and hair!!!
The filter also causes the water to be in a constant state of motion, therefore decreasing the growth of algea and molds.
We added  'chlorine for small pools '(found at wal-mart). And we got a cover. I did NOT put the cover on and we had a big storm. The pool was filled with crap. And we don't have a vacuum (obviously). So I learned the lesson - cover the pool in a storm.
It's also small enough that  you CAN empty it ever 2 weeks and refill it (which we did).
One more plus - because the pool is so small it stays nice and warm!!! (good for Suzy AND for me).
As you can see, even my 'big' girls are enjoying our little pool.
check out the pictures under:
PHOTOS-Water Therapy Summer 2011

happy floatingbeachball







                                        















   
June 25, 2011


Oh boy - what a week.
thank God it's over.

Suzy had her hip adductor tenotomy surgery last Friday.
She healed up well from that. Her incision was teeny tiny, and her pain was manageable.
She was off codeine and valium and onto just Motrin after only 3 days. She now has to wear a foam brace between her legs for 6 weeks while she sleeps (to keep the legs abducted) and we have to do lots of stretches with her legs during the day. Whenever we can get her into an abducted position we do it. We want her tendon to heal back longer than it was - so it's best to keep that area stretched out while it heals.
It's not bothering her much at all.   awesome!

However, by Monday she was very sick. Fever, nonstop coughing, lethargic, miserable.
Off to the pediatrician who diagnosed her with pneumonia. The doctor said it's not that uncommon for kids to develop pneumonia when undergoing an operation. Whenever an airway is established (thru intubation) (which they do in most surgeries where general anesthesia is used) - you open up the possibility of introducing cooties into the windpipe and down into the lungs.
So we started her on antibiotics and nebulizer breathing treatments and her fever was gone by the next day.
By Friday her fever was back and she was vomiting - off to  the the pediatrician again.
Her "crackle" was better, but still wheezy. We switched her antibiotics and her breathing treatments.
By last night we were all FINALLY sleeping better. She only got up twice!!

The scary part for me - she has lost all of her gains.
I don't know what's wrong - but I don't like it.
We worked SO hard to get her where she was last week..... and now it seems to be gone. She is like a total wet noodle. She can hardly hold up her head.
Last week she was standing on a table - and yesterday she won't even take any weight on her feet. Her legs just collapse!
Last week I didn't even need to strap up the buckles on her wheelchairs and activity chairs - this week I can't even find enough straps to buckle to hold her up. She just falls right over.
It's worrying me.

I KNOW she just had surgery.
And I KNOW she has pneumonia.
And I KNOW she doesn't feel well..... but I'm pretty much over it.
I am worn out.      Crap.
And it doesn't help that I haven't had any help since Jenny left us back in February. (I tried a helper girl for a week... but that didn't work out.)
So I have been "goin' it alone" for 5 months.
And it ain't easy.
It's pretty damn difficult.
Suzy takes 24/7 care. She can be impossible even on her good days. She gets bored easily - but she can't do a damn thing by herself. And she can only watch so much TV. She wants to be picked up, and moved around, and taken places, and read to, and thrown/rolled around, and kissed on, and fed 4 meals, and just entertained.
(On good days she MIGHT be able to push some buttons on a toy or on her iPad IF it's positioned just right on her tray.)

I know - bitch, moan, bitch, whine, bitch.......

We all know I ADORE this child - I love her unconditionally - but she's not the easiest fish in the sea.

My plan is to get a helper in here full time when school starts in September. AND summer school starts next week.
She will go to her SAME school for 6 weeks from 8:00-11:00.
She will go to the SAME classroom with the SAME AWESOME teacher.
She will really like that. And it willl certainly makes things easier around here. She will have some morning entertainment.      hip hip hooray.

I'm praying this weekend she takes a big turn for the BETTER - and hopefully my attitude will too.wink_smile


SURGERY! June 14, 2011

SURGERY! -



It was decided last week that Suzy needs surgery, and it's been scheduled for this Friday, June 17th.

We met with an Orthopedic Surgeon, Dr. Saint Remmy).  Suzy's regular Rehab. Doctor (Dr. Thorogood) wanted to get orthopedics 'on board' to get his opinion on Suzy's hips and spine (the 2 most common orthopedic problems with kids who have cp.)

So, we met with him and took new x-rays.
Her spine is 100% perfect. (he called it a "beautiful spine.")
Her right hip still looks great!!!
Her left hip - has been holding at about 45% uncovered for 2  years.  It's great that there has been no change!!......however; he said that his job was to "do whatever he can do to keep the hip from becoming dislocated (100% uncovered)."

Her problem: a very tight tendon. This tendon wraps around from the top of her hip down into her groin area. Her brain continues to tell the tendon to pull. The continuous pulling is slowly pulling the hip out of socket.
The solution: cut the tendon in half.

It's not a permanent "cut" - tendons will eventually grow back together from where they were cut; but by then there will be space in between the 'cut' and therefore the tendon grows back longer.
Hence the name "Tendon Lengthening Surgery". or "Tendon Release Surgery".

The procedure itself should be quick and easy - a little anesthesia, a slice thru the groin skin, and a cut right thru the tendon. (I pray that it's quick and easy....)

The recovery is - pain management, and sleeping with a brace between her thighs for 6 weeks.

Hopefully this will ease any pain she might be having in the groin area (if any at all) , AND keep that hip where it belongs.
It should NOT effect any other gains that she has made.

The picture shows the 'bulging, tight tendon' on her left side groin area (the right side of the photo).

Please keep our little peanut in your prayers on Friday.
Thanks,
Whitney

 

June 08, 2011
I just added a video of Suzy working out with Azriel in NJ doing Medek Therapy.
Click on VIDEO-Working Out With Azriel and it will take you to the youtube video. enjoy..... she sure did
teeth_smile