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





   

   
   

AQUATHERAPY August 20, 2009

Suzy has been doing Aquatherapy this month. We bought a neck ring and a therapy pool from www.waterwaybabies.com.

The ring is placed around her neck and she is put into water! It works best in a real, inground pool (but we don't have one); so, she gets put into a 3 foot tall green therapy pool. It works well for her!

Aquatherapy is supposed to be really good for children with cerebral pasly. The water lightly stretches her muscles with each movement she makes. Plus, she moves EASIER due to the lack of gravity. So she is receiving input to her brain that she can cause her own muscles to move. Hooray.

We put her in for about 30 minutes each day. She has been loving it.

I posted pics under - Photos -Aquatheray.

Please excuse her 'modesty'.   We put her in the water in her birthday suit.

Peace,

Whitney

August 14, 2009

We have returned from our New York City Adventure! We are all exhausted, but so excited that we went. All 3 girls started off being overwhelmed and nervous from all of the noises, and smells, and sounds, and experiences. But, they all turned into 'City Girls'!  It was pretty cool to see the transformation. They were hailing cabs, and eating on the run, and shopping for hours, and jumping off and on subways everyday.

The best part was the MEDEK therapy. Chris and I are very optimistic that we have discovered something that will really help Suzy. This kind of physical therapy is intense, and hard work, and REALLY exercises the BRAIN PATHWAYS. It was so exciting to see the transformation in Suzy in just 2 weeks. MEDEK is a series of exercises performed by the adult, but Suzy is the one doing all of the work. Each movement that she makes is really challenging her motor pathways and causing new connections.

The therapist, Jonathan Orgel, worked with Suzy for the 2 weeks developing a home program for us. He decided which exercises she did well with, and which ones were at her skill level, and then trained us to do them with her. We are then to do the 10 exercises with her twice a day for 45 minutes.  The only negative is that Suzy is fairly big, tall, and heavy for the program. In other words, it is very difficult for me to do all of the exercies with her. I am just not strong enough or tall enough, and my hands aren't large enough to maniplulate her correctly. BUT Chris IS!!   So..........my amazing husband had to agree to do most of the exercises with her each day. Chris feels very good about MEDEK, and the possibility for it's role in Suzy's recovery. So he was trained in all 10 exercises, with me assisting, and he has committed to doing 45 minutes twice a day.

MEDEK is performed on a foam covered table. Chris went to Home Depot today to get the supplies to make the table. I will then cover the table in the foam and vinyl tomorrow. We should have the table ready and Suzy starting her MEDEK program by Sunday.

After Suzy has mastered these 10 exercises, in about 8 weeks (hopefully), we will return to Jonathan in NY and get trained in new exercises.

I included a few pics under 'NYC - MEDEK'

Please pray that this program will really help her gross motor skills. After seeing her with Jonathan the past 2 weeks, I must admit that I feel much better about her future, her quality of life, and the chance that she just might walk one day.  (It's scary to write that...... because what if it doesn't happen, and I'm just setting myself up for disappointment?)   sigh.....

Today started on a good note..... but then I opened up my email and I was HIT with a shocking and very sad dose of reality - a friend in my special needs community (Tracy Dart) lost her son yesterday. William (age 10) was a twin. At his birth, things went terribly wrong. His sister was born fine, but William struggled to be born. He was removed by emergency c-section, but suffered from oxygen loss. He had severe brain damage. His parents have fought so hard for him for 10 years! We met them when we received our first round of stem cells. William was a fighter, and he waws perfectly adorable.

We will miss him. But I smile when I think about how he is now WALKING with the angels and RUNNING into God's arms. 

Peace,

Whitney  

NY Up-Date August 08, 2009

NY CITY UP-DATE

We've survived our first week!! It has been quite the adventure.

Our week started with a 'divine intervention'. We feel that God was with us on this journey. On the flight up here I received a call from my friend, Meredith, from Charlotte, NC. She was calling to tell us that she has a friend who owns a second home, an apartment, in Manhattan, and was willing to let us use it for our 2 week stay !! How amazing is that? We are extremely grateful to the owners, Susan & Bob.

This apartment is unbelievable. It is on 5th Avenue, right across the street from the Empire State building. It has 2 bedrooms, 2 bathrooms, with a balcony and a pool. And it's on the 35th floor. I keep singing the song from The Jefferson's "Well, We're Movin' on Up......To The Sky.."  We're spending 2 weeks in a multi-million dollar apartment. How bad can life be, right?

And, even more important, we are in LOVE with the therapy program, MEDEK, and I simply ADORE the therapist, Jonathan. I am so excited to be able to give Suzy this opportunity. I feel that this is really going to help her with her motor skills. Hooray.

Our typical NY days have been-

Wake up and take in the incredible view, eat some bagels, ride the subway, shop, lunch at a deli (pizza, of course,) therapy in the afternoon in Brooklyn, swim, explore the city, dinner somewhere in Manhattan, and gelato for dessert.

THE GOOD:

This apartment, Medek therapy, Jonathan the therapist, the food, the American Girl store, Central Park, the many different cultures, the helpful people,

THE BAD:

Losing Maggie in ToysRUs and having to get the security officers involved (my heart stopped beating and I couldn't breathe), witnessing a big gang fight in Brooklyn and watching the police break it up, having to purchase a new stroller because Suzy's wheelchair is too heavy to lift up and down all of the subway stairs (there aren't many elevators),

THE UGLY:

The subway stations dripping in urine and all kinds of foul smells and very loud screeching brakes that make Suzy cry everyday.

Actually, everything is going so well (and we have such a wonderful apartment to stay in), that Chris and the girls have decided to stay with me for the second week. My mom will still be coming up. We are all excited to have her arrive tomorrow.

Thank you for checking in on us. We appreciate you!

Peace,

Whitney

 

"The Boozes Take NY City" August 02, 2009

"Start spreading the news"........

"We're leaving tomorrow"...........

Tomorrow, Aug. 3, we're heading up to NY City for 2 weeks for another 'adventure'. I am taking Suzy to the city to participate in a new physical therapy program - called MEDEK.  This particular therapy was created by Ramon Cueves from Chile (www.cuevasmedek.com). Mr. Cuevas then trained some people in the states to utilize his therapy. We found a fellow in NY who uses MEDEK, and he has been recommended to us (www.milestonespt.com).

I know of some children who have responded extremely well to MEDEK, so I am prayerful that Suzy will also be one of those children. The program consists of meeting with the therapist twice a day for 2 weeks. During this time Suzy is evaluated and WE are taught all about the exercises to perform with her. Then, it is our responsibility to come home and work with her twice a day for 45 minutes doing these exercises. Once they have been mastered, and the new skills are learned, we head back up to NY for another week to learn new exercises. (maybe sometime this fall.)

The first week we are taking the entire family. We thought it would be a wonderful opportunity for the girls to experience the city. We traded in a bunch of hotel points and were able to get a great little hotel smack dab in the middle of TImes Square. (so one whole week will be FREE.)

Chris and the 2 big girls will come home next Sunday, and my amazing, perfect, and wonderful mom flies up for the second week!!

We are super excited for this opportunity. Yes, I am hoping that MEDEK makes all of my dreams come true.

The Big Apple is the city of Big Dreams, right??

If we can "make it there, we'll make it anywhere".................. right?

Peace,

Whitney

July 30, 2009

We are LOVING the "WINGBO"!!

Our most recent piece of equipment for Suzy is the WINGBO.  It's a prone position swing,created for babies, that is used to promote tummy time. (www.wingbousa.com) Being on the tummy is an important part of development for babies. The special needs community has discovered the swing and recognized the benefit it is providing our children. Swinging is great for vestibular stimulation. And being on Suzy's tummy encourages head control, arm strength by pushing up, balance, and FUN!!

When we raise the swing, we can push Suzy fairly hard and give her a really good swing. She laughs and loves it.

Or, we can lower the swing so that her feet touch the floor. This enables her to move herself! She is getting some important input and learning that when she pushes her toes, she can make herself move. She also loves this.

I must admit that this has been one of our favorite pieces of equipment. I posted a 2 minute video of her enjoying the WINGBO. Click on VIDEO - Suzy Lovin' The WINGBO.

Enjoy, and Peace,

Whitney