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





   

   
   

Weekly Up-Date June 20, 2009

We've had a busy  and successful week.

On Wednesday, Suzy was admitted to the Children's Hospital for her Botox treatment. This involves first mildly sedating Suzy, and then administering 12 Botox deep muscle injections!! She did surprisingly well. She didn't start crying until the 9th shot! Botox was put into both hamstrings and both tricepts.The Botox will paralyze these muscles over the course of 2 weeks. Those muscles will then remain that way for about 5 months. The goal is to work really hard in Physical Therapy to stretch and strengthen the apposing muscle group. This will hopefully allow these apposing muscles to have more control over her movements, help her to move more effectively, decrease the stiffness from the tight muscles. This is a common procedure with children who have cerebral palsy.

Please wish us luck!!

Also, I attended my FIRST Support Group Meeting for Mommies with Special Needs Children. I met 16 amazing mommies. I had a really grood time, and I'm looking forward to going again next month.

Also, Gracie and Maggie had their last day of First and Fourth grade. They both had fantastic teachers that we will miss very much, but I just love having the girls home for the summer.

And last, Suzy is starting to roll! When I put her on her tummy for 'tummy time' she rolled over onto her back. Chris and I cheered, and made  her do it over and over again. She was so proud of herself. Whenever she flipped over she just giggled and giggled. Hooray for our baby girl.

Thank you for checking in on us. We love to have you visit.

Peace,

Whitney

 

Off to the E.R. June 11, 2009

The day started out smoothly enough.....

But by 11:00, Suzy was in obvious discomfort and having MYOCLONUS  (brief, involuntary jerks or twitches of a group of muscles; sudden muscle contractions,).

Our first thought was seizures. But, upon further evaluation, we concluded that she was in pain, and the 'jerks' were happening every minute or two in response to something hurting her. She was favoring her left ankle, and screamed when it was touched. But, she was also crying when placed on her back, and cried when we felt her tummy, etc., etc.,

I called the pediatrician. They told me that "due to Suzy's medical history, and her special needs" we should go to the E.R. where they will have a neurologist in the house.

sigh...... I hate that fact that Suzy has a 'medical history' and 'special needs'...........

So, off to the the E.R. we went. She continued to jerk, twitch, cry, moan, and even laugh ( a typical girl) !!! We had her ankle X-Rayed and blood work drawn.

Results:

-The myoclonus is NOT seizures (just a reflexive reaction to pain).

-Her ankle is NOT broken, but it is probably strained.

-Her EAR is infected.

We came home, fed her a good dinner, and loaded her up with an antibiotic, ibruprophin, a muscle relaxer, a warm bath, and snuggled her into bed.

She is sleeping peacefully. The day has ended smoothly.

Thanks for checking in on her.

Peace,

Whitney

 

 

June 08, 2009

Yesterday we had a perfectly wonderful fundraiser!!

Chris and I were just amazed at the turn-out. We are so thankful to all of the people who came to Knuckleheads and supported our family. Words cannot express how happy our hearts felt when we looked around the restaurant and saw so many super people, from so many different walks of life, coming together for us, for Suzy, and for the Paras family.

GOD IS GOOD!! And the people of Virginia Beach are INCREDIBLE!!

Channel 3 WTKR News did a fantastic job covering the event. If interested, please click on the following link to see the news clip, and then click on "Virginia Beach Fundraiser at Knuckleheads":

http://www.google.com/bookmarks/lookup?sig=XayDlQ38P-n0VVnxelQHhQ&hl=en&btnA&sig=XayDlQ38P-n0VVnxelQHhQ&btnA=Add+bookmark&bkmk=1&ctz=240

 I included pictures of the event on the left under 'new photos - fundraiser'.

Suzy says "Thank you , and I love you all!"

Peace,

Whitney

Bikers For Booze June 03, 2009

Just a friendly reminder -

This Sunday, June 7th, is our 2nd annual fundraiser "Bikers For Booze". This year is special because our friends and neighbors, the Paras Family, are part of the fundraiser. All money raised will be shared between both families. Their 7 year old son, Jonas Paras, has sustained a severe hypoxic brain injury. In January Jonas had pneumonia. His lungs filled up so fast he went into cardiac arrest and he had to be revived.  He was 5 minutes without oxygen to his brain. Jonas is currently at home with his family and is in a semi-conscience state. His neurologists gave him the same prognosis they gave Suzy - never walk, talk, crawl, communicate, etc...

 He started Hyperbaric Oxygen Therapy 10 days ago, and he had his first smile!!  Since then he has smiled 4 times and is moving a bit more. Praise God!

Fundraiser Details:

The Motorcylces will have their Poker Run from 9:00-11:30 a.m. (We are expecting 250 riders this year!!)

We will meet up at Knuckleheads Restaurant around 12:00.

The Silent Auction will be from 12:30 - 2:00.

The Live Auction starts by 3:00.

A live band will be entertaining us - "Parallel Minds".

There will be a free Face Painter- (the one from the New Castle Carnival).

There is a free Bouncy House for the kids.

There is lots of food and adult beverages.

This year the event is opened up to the outside of the restaurant for more room.

And there are TONS of AMAZING ITEMS TO BID ON!!!!!!!!!

Please let me know if you have any questions.

We appreciate ALL OF YOU SO MUCH.

Peace, and hope to see you Sunday.

Whitney

Swinging and Strolling May 27, 2009

Hooray #1 - We  applied to our insurance company for a 'special needs' swing. It was approved and arrived last week.

Swinging is great for the vestibular system! Swinging improves our sense of  balance and our sense of motion. We are hoping that all of this vestibular motion will cause Suzy to have a more constant and correct orientation. She tends to drift her head and eyes up-ward! About 30% of her day she is looking towards the heavens! While we encourage Suzy to pray, we would rather her spend the vast majority of her day looking straight ahead at the world in front of her. 

So, to quote her Physical Therapist, "We are going to swing the devil out of her!!"

Hooray #2 - I learned this morning that our insurance company also approved her little wheelchair!! (and all of the assessories that go with it.) It should arrive next month!

Here is the link so you can check it out: (It's the Ormesa Bug Seat, and comes in blue or gray - we got the gray):

www.ormesa.com/en/browse.php?category_id=2330e4642424bc9de6e48c55b29d906e

Hooray #3 - Yesterday Suzy started to rub her hands together when her PT told her to 'clap clap'. This is very big! It is so hard for a child with cerebral palsy to bring their hands to mid-line. Also, it showed us that Suzy UNDERSTOOD what was being asked. AMAZING. Go Suzy Go.

Hooray #4 - Our fundraiser is only 10 days away!

(click on the photo of Suzy swinging to make it nice and big!)

Peace,

Whitney