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





   

   
   

KidWalk July 15, 2010




This week we finally received a new piece of equipment for Suzy ~her KidWalk!! regular_smile    (it had been held up by insurance approval and purchase for 7 months) 
 http://www.primeengineering.
com/pages/products/kidWalk.html

 The KidWalk is a 'walker' or 'gait trainer' that Suzy is strapped into and keeps her upright so that she can begin to take some steps and try to get herself MOBILE!
She loves it. heartShe loves being UP and vertical! (her alternative is to be laying flat on her back, or stuck in a wheelchair). So, I think this makes her feel a little bit more 'normal', if you will, and allows her to feel a little more like a 3 year old and less like a baby.
She has only had it for 3 days, so she is still trying to figure it out. She hasn't actually stepped forward by herself (yet); but I believe she will get the hang of it over time.
Our goal it to use it everyday at school (when she begins preschool in September). I think she will really respond to being UP like the other children in her class. She will be in a special ed preschool; but so far she is the only child in the class who is in a wheelchair.

I'm also happy to report that Suzy has had some nice improvements from her last treatment of Hyperbaric Oxygen Therapy. She has less spasticity in her arms, they are turning inward freely and purposefully. She is holding and manipulating objects in her hands better. I put her in her carseat yesterday, and gave her a toy (bells on a stick), and she held it and chewed on it for 15 minutes!! Unheard of 3 months ago!!!  She is repeating a few sounds (noises) better than before HBOT. This week she also found a toy on her wheelchair tray, hooked it into her hand, and picked it up! (This doesn't sound too big, but believe me, it is!!)
I'm very proud of her, and grateful for those small improvements. Every little bit helps, and they will all add up to something big one day.
 We haven't planned any trips back up North for our favorite ABM therapy. We still LOVE this modality and I want to be committed to it ~ but, like everything else on this journey, it's just so expensive.confused_smile

We continue to be blessed and grateful for having Suzy in our lives. She amazes me with her spirit, and her JOY. She teaches us that life can be worth living in spite of physical disabilities.

I added pictures under PHOTOS - KidWalk Summer 2010

Peace,
Whitney

 

July 02, 2010
Yippee! We're going home tomorrow. We have made it through 3 weeks here in NC doing HBOT. Tomorrow is Chris' 46th b-day, and what he wants most is to go home. (I agree!) The girls have had fun, but they are also ready.
Suzy has done well. I am always so proud of her when we travel. She's a trooper.

Suzy is learning  to hold things in her hand and bring them  to her mouth. She discovered a spatula this week, and FELL IN LOVE.heart
See the new video: VIDEO-Suzy Loving' The Spatula.

I pray that everyone has safe and fun 4th of July weekend.flag_american

Peace,
Whit
BLUE ROSE July 01, 2010
The man went to a grocery store.
He was trying to gather up his items when he became blocked in a narrow aisle by a boy who appeared to be about 16. The man wasn't in a hurry, so he patiently waited for the boy to realize he was there and to move out of the way.

The boy started waving his arms excitedly in the air, and shouting, "Mommy, Mommy,  I'm over here!!  Mommy"
It was obvious to the man that the boy was mentally challenged, and he was nervous to see the man standing so close to him.

The man said, "Hey buddy, what's  your name?"
The boy said, "I'm Denny, and I'm shopping with my mommy."
The man said, "That's a cool name. I wish my name was Denny, but it's Steve."

Denny said, "Steve, like Stevarino?"
Steve said, "Yes. How old are you Denny?"
Denny turned and saw his mom, and asked her, "How old am I Mommy?"
His mom said, "You're 15. Now be a good boy and step aside to let this man pass."

Steve continued to talk to Denny for a few more moments, and asked about bikes, school, and summer. Denny's eyes danced with excitment to be the center of someone's attention.

Denny's mother thanked the man for talking to her son. She said that most people don't even look at Denny, much less talk to him.
Steve said it was his pleasure, and then said something that was prompted by the Holy Spirit:
 "There are plenty of red, yellow, and pink roses in God's Garden; however, "BLUE ROSES" are very rare, and should be appreciated for their beauty. You see, Denny is a Blue Rose and if someone doesn't stop and smell that rose with their heart and touch that rose with their kindness, then they've missed a blessing from God."

The mom asked, "Who are you?"

And the man said, "Oh, I'm just a dandelion; but I love living in God's garden."

May I suggest that they next time you see a Blue Rose, don't turn your head and walk off. Take the time to smile and say Hello. Why? Because by the grace of God this mother or father could be you. Or your child, or grandchild.
What a difference a moment could mean to that Blue Rose or to their family.

Peace,
From one old dandelion to another!
"Moaning & Bi*ching" June 25, 2010
Just spent 1 hour inside a HOT oxygen chamber with Suzy, watching Dora (episode # 42 - for the 115th time),
Exited the chamber to find Gracie and Maggie in the waiting room - totally bored and annoyed. They both gave me that look. It said (insert eyeroll here), "gReaT way to spend summer vacation!!"
Trying to make it up to them I said, "Let's go get lunch at Rockers." The girls love their gourmet salads.

Buzz Kill #1 - wrong dressing was put on Gracie's salad.
Buzz Kill #2 - Music is too loud for Suzy's tired tolerance level. She cries bloody murder.
Buzz Kill #3 - we must leave half way thru ice-cream. Suzy is making a scene.
Buzz Kill #4 - Suzy moans and bi#ches the whole ride home.

Pull into parking spot. Everyone hops out. I'm trying to get Suzy out of here car seat.
I yell, "Maggie, take the keys and open the apartment door."
Gracie says, "She can't. She's puking!"
Sure enough. Maggie is in the bushes ~ throwing up her $9.00 salad.

Kids - gotta love 'em. 
Right?
 
Vision Loss & Feeding The Animal June 24, 2010
dissapointment......sigh.....I'm tired of facing dissapointments
Last week I posted that Suzy's vision was remarkably changed. I was LOVING it. My baby was spending several minutes making direct eye contact with me!! She was staring into my eyes, and I could "feel" her. She was following people as they walked around the room. Vision improvement was the main thing I wanted from this round of HBOT treatments. I was feeling really positive.
This week.... it's gone.
Her vision is just like it was last month.
She looks at my hairline instead of my eyes.
She prefers to gaze at the ceiling instead of her sisters.
She seems to come in and out of focus.
~bummer~
I'm not sure why it came and went, and the practitioners at the clinic can't explain it either.
Trying to be positive, I will say that if she can do it once, then maybe she can do it again. She has shown that her brain has the 'potential' to do it.... So maybe it will return.

Nothing made mommy's heart happier than to have her gaze into my eyes. There is just something so special about eye-contact.heart

Also, Gracie, Maggie, Suzy, and I are ALL dissapointed today because Jenny and Carley left NC to go back home to VA. We have missed them all day long. We want you back, Jenny and Carley!!!!

Chris will arrive Monday to be with us for the final week. Hooray.

Yesterday we spent the afternoon at one of our favorite places in NC ~ Lazy-5-Ranch. We wanted to show it to Carley and Jenny. It's a ranch with lots of wild, and free, animals, and you drive around in your car and feed them out the window. It's very cool.
The only 2 animals behind a fence are the rhino and the giraffes. We get to feed deer, emus, buffalo, gazelles, giraffes, pigs, goats, alpacas, llamas,  bision, etc...
I posted pics under - Photos Lazy 5 Ranch

Peace,
Whitney