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





   

   
   

New York Up-Date October 15, 2009

Greetings fom the big apple. We are doing great. Suzy is a first-class traveler (praise God). She adapts easily to all of the different sleeping, eating, playing, and therapy situations that I have put her through the past year.

We had our first session with Jonathan (our Medek therapist) on Monday. He did an evaluation of Suzy when we were first here in August of her gross motor skills, and then he did a re-evaluation now (8 weeks later.) Suzy scored a 2.1 in August, but this week she scored a 4!!  That  basically shows almost 2 months of progress in 2 months. For a normal developing child to progress 2 months in 2 months time is, well.....normal.   But for a brain damaged child to progress almost 2 months in 2 months is something to be VERY PROUD OF. 

Jenny, and Suzy and I had a party!!

Jonathan has her doing some amazing things! Suzy is sitting by balancing on a wooden box, and standing by leaning against a table. He puts her into squatting positions and gets her to stand up, and he has her sitting in the palm of his hand while he raises her up into the air. It's so exciting to see her work with him. By now my faithul readers know how much I love this therapist. I have so much faith in him and in his therapy program. He is a kind and gentle soul, and he does the Medek therapy progrm so well.

Jenny is with us this first week. (another 'praise God'). She is keeping us company, and helping us get around, and just enjoying being in Manhattan. Jenny leaves tomorrow morning, and I will be by myself until Sunday when Chris arrives. Jenny will stay with Gracie and Maggie next week and take care of them!! 

Thanks for checking in on us. Thanks to my family and friends who are helping us do this. We really appreciate all of the support. Thanks for helping to take care of Gracie and Maggie while I'm gone. Thanks for the prayers.

I posted some pics under Medek, Round 2. I will add the the pics as the next week goes by.

Peace,

Whitney

We're Off October 11, 2009

Good bye Virginia Beach...................Hello New York.........again!!

Suzy and I are leaving today to head back up to NY City. We will be participating in some more Medek Physical Therapy. (www.milestonespt.com) We are staying for a couple of weeks, and trying to get the most out of it that we can. I really love and believe in this therapy program...... but we are finding it challenging to do here at home. I REALLY wish there was a Medek therapist closer to VA. No, I haven't decided that it's time to move to NY.......but I have certainly thought about it. .............

We are just hoping to get up to NY as much as we can over the next year.

Suzy is doing, and feeling, well. That is certainly a great way to start a trip.

Gracie and Maggie are pretty depressed about me going again. The saddest thing I heard was Gracie saying, "...yeah, whatever, Mom. ....We are getting used to you leaving us all the time."

damn it. That is truly a way to break a mommy's heart.

Yes, I have tried SO many therapies for Suzy. And I keep looking for the next 'great' thing. And my attention is more focused on Suzy right now than on the other parts of my life, (even though I really, honestly am trying to balance it all). For the time being, I am just saying daily prayers that my children will understand, and that these very busy years will pay off in the long run.

Some people call me committed. Some say I am devoted and an inspiration.

Others say I should BE committed, and that I'm obsessed, insane, and desperate.

I'm not quite sure what I think...................... so I try not to think about it.........

Pray for us, please. Pray that God will allow Medek to provide Suzy with some motor function. Pray that her quality of life will improve with all of these therapies. Pray that my other children will understand, and forgive me. Pray that we have a safe trip.

And I will pray that you have a healthy and peaceful week.

Peace,

Whitney

G-Therapy October 05, 2009

Today, Oct. 5th, we began a NEW treatment for Suzy - "G-Therapy"

G Therapy is a pioneering treatment for a variety of neurodevelopmental disorders and neurological conditions including cerebral palsy, mental subnormality, austism, Down's Syndrome, global delays, etc .

 Research in G Therapy is led by Dr. Gunvant Oswal and Dr. Pooja Upasani in India.

 The treatment consists of combinations of pharmacoepia-based potentized medicines derived from herbal remedies and body salts.

 check it out at www.g-therapy.org

Suzy will take the medicine for 6 months. It is expensive, and another huge committment on our part.......however, once again, I have talked to parents who have had some very positive experiences with g-therapy. Therefore, I feel like it is something we must try.

Please pray that g-therapy is another tool that will improve Suzy's quality of life.

Peace,

Whitney

September 30, 2009

Crappy - that's about how I'm feeling!

Suzy was us last night from 1:00 a.m. on...very upset. I took her to the pediatrician this morning.

The bad news is that she has a 'raging' ear infection. She got a shot of rocefin, and a perscription antibiotic.

The really bad news - she has has NO head growth for 20 months!  NONE!! In order for the skull to grow, the brain must grow. So there it is -the hard, cold facts - her brain has NOT grown since her encephalitis. Crap.

What does this mean? For now, the doctor said that he is not surprised. And for me to not worry. We still just look at her clinical picture. If her head size is the same in one year, then we will worry. ..??????

I am worried NOW. No, I'm not worried, I take that back. It doesn't change her treatments, or her recovery to date, or how much we adore her......

I am just dissapointed. It would have been such a huge treat to see that her brain had grown a couple of centimeters. It would have been an early Christmas present. It would have given me hope............

 

Greetings! September 28, 2009

Just wanted to send out some quick up-dates on Suzy.

Our new , new glasses are working much better. I still find them in her mouth, but not as often. And they are so much softer, so they must be more comfortable.

We have added a new member to our 'team' - a chiropractor. We went for our first visit on Friday. Why? Because I read that it can help children with cerebral palsy. I am worried that Suzy will get scoliosis (many immobile children eventually get a curved spine. ) She sits in her wheelchair and bends to the right. We try multi-positioning methods, but she still favors leaning to that right side. The chiropractor said there is no evidence of any scoliosis yet! Super. I am hoping that regular treatments will help to keep her spine in the proper alighnment. Also, she has a tight neck on the right side. It could become torticollis (shortening of the neck muscle), so he is going to help lengthen and loosen that muscle.  All signals travel from the brain, down the spine, and out to the body. So it just makes sense to me that the spine should be well alighned to be the most effective!

Chiropractors treat the whole body -- and her whole body needs help! So, I guess we make a good match.

If anyone wants a good chiropractor locally (Virginia Beach) I HIGHLY recommend Dr. Marcil. His clinic is at the sports medicine center at Gold's Gym on Princess Anne Road. He gives a discount to special needs children. He is so smart, and so very kind.

In 2 weeks, Oct. 11th, Suzy and I will be leaving for 3 weeks. We are going back to NY City to meet with our PT up there, and continue with MEDEK therapy. I just hate leaving the family for so long. The girls don't deserve this. But, I really believe in this therapy program. And he is the closest medek therapist that I know of. Please keep us in your prayers. Pray for some great gross motor skills for Suzy. And please pray that the girls and Chris will be fine without me.

Hope you all have a great week.

Peace,

Whitney