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





   

   
   

Loving Today December 12, 2009

I have received SO many wonderful responses since my last journal entry! Thank you to all of my amazing friends, family members, special needs 'moms', and therapists. I truly appreciate everyone who came forward and helped me through the 'life expectancy' episode. I am touched at how many supporters I have. I received emails, phone calls, and guest book entries. And I learned 2 VERY important lessons :

1. - The doctor's prediction of 7-14 years is ONLY a guess, and he used a chart based upon older predictions, anyway. These older charts have even been refuted in a court of law. I have since heard of many children who were 'supposed' to die by their 5th birthday, (or 10th birthday, etc.)  and yet they are still going strong at age 20...or even 30. And these children are still happy and healthy.  If I keep up with her physical therapy,  cognitive and motor stimulation, doctor's appointments, and a healthy lifestyle she will also prove the 'charts' wrong.

2. - Most importantly, I was reminded to ENJOY her TODAY. She is truly a joy!! We have been blessed to still have her with us. The doctors are NOT God. Only He knows how long we will have Suzy. And, actually, nobody here on earth was promised tomorrow.

Every day that we are together as a family is a gift from God.  From now on I will work very hard at appreciating TODAY, and not getting so worried about TOMORROW.

 Peace,

Whitney

7 - 14 December 02, 2009

7 - 14 YEARS

Today we met with Suzy's neurologist. He placed her on some 'Scientificaly Proven Cerebral Palsy Life Expectancy Chart." It assessed 3 main criteria - her motor skills (or lack there of), her severe mental retardation, and her not being a self feeder - and her life expectancy is 7 to 14 years of age........I felt like I was punched in the stomach. I truly had no idea. Chris claims we were 'sort of' explained this a year and a half ago. I guess back then I was still in 'trauma mode' and only absorbed 80% of what was said.

I thought we had already faced the biggest heartache we could face with Suzy. I simply can't imagine having to bury my sweet child.

The neurologist explained that most children with severe brain damage will eventually get pneumonia due to aspirating saliva. After several winters of flus and pneumonias their lungs begin to break down and become damaged. This leads to a downward spiral and they have a harder time recovering each year. Also, bladder infections and kidney failure will lead to severe medical problems. Eventually the children can no longer hang on. He said we will see how the next few cold and winter seasons go to re-assess her life expectancy.

The most important factor in all of this is: the lower the motor skills = the sooner the death. A sedentary child  has a harder time clearing the lungs. And, Suzy's motor skill are on the lower end.  IF we can get Suzy rolling around ,or even crawling, she could see her teens or 20's. And IF we could get her WALKING he said she can live to see her 30's or even 40's.

Now I realize why we need to work so hard to get Suzy moving............her life depends on it.

Honestly, this is all horifying news to me. One of my biggest worries has always been "who will take care of Suzy when I am old or dead?"

I didn't consider that she might not live to 5th grade..............

my heart is heavy.

 

Back from NY Therapy November 28, 2009

We're home from a busy week in NY.  Suzy did well with her therapy program. She did 2 sessions a day (except on Thanksgiving day). She is making a little progress. When I say "little" - I mean LITTLE. Her motor progress could be measured with a millimeter.  I BELIEVE this is the physical program for her.... but how do we get done all that needs to be accomplished in just 4 days a month????

I am very frustrated. I feel that Suzy needs to be in NY every day of the week working with this man. I feel that her future depends on it. So - now what do I do? How do I prioritize her future? How do I justify having her in NY when the rest of my family is in VA? I can't. So does that mean I am content to having her in a wheelchair for her whole life?  Do I dare make that decision? or do I just continue on the path of getting up there when I can, and hoping and praying for the best??.....God...... I'm stressed.

I try to highlight the positive on this website. I think I may be showing too much of the "good", and not enough of the "bad". Yes, she looks great in pictures. However, I realized that she looks SO MUCH better in pictures than in real life.  A women (who I thought followed Suzy's journey fairly well) and I were having a discussion 2 weeks ago. I mentioned something about how heavy it was to lift her wheelchair in and out of the car. She asked, "Isn't Suzy doing some walking yet?" My mouth must have fallen opened. I answered, "Why, yes... she walked in my dream last night."

Seriously.... Suzy is like a turtle that is on the side of the road tipped over on his back. If you lay Suzy on the floor on her back, she will stay there forever. She will kick her legs, and flap her arms a little. And she will get frustrated and bored, and then cry. She might even get her fingers in her mouth so she can suck on them to comfort herself.  A couple of times she flipped up onto her left side!..... but that's about it.  If you place toys hanging above her to play with, she might touch them with her right hand. (that happened a few times last month).

If you plop her down into a sit position, she will smile, and hold herself for about 10 seconds. She will tumble over to the side. She is starting to reach out her arms to try and catch herself when she falls. (hooray!)

If you put her on her tummy, she can lift her head and look around. She will suck her fingers. She can roll over to her right side and land on her back (hooray). But, she can't reach out and grab or play with a toy. She can't push up onto her elbows. She certainly can't crawl or move forward.

And she certainly can't even come close to walking. (yet)!

But remain positive - I WILL!!

The rest of the thanksgiving NY trip was great. We took my neice (Carley, who is 9). Gracie and Maggie had a playmate. They had a blast. We went to the Macy's parade. We couldn't see anything but the occasional float go by. There were 3 million people there, and about 1 million of them were standing in front of us!! So, we left early and went to a nearby Hooters for beer and fries!! My kind of thanksgiving morning parade.

And we had a wonderful feast at Ocean Grill in Central Park with my sister and her whole family.

I loaded up some pictures under -"PHOTOS-3rd trip to NY"

I hope you all had a wonderful week.

Peace,

Whitney

 

NY and therapy for Thanksgiving! November 21, 2009

Off to NY again.

We are leaving tomorrow to take Suzy for more treatments in Manhattan with the Medek physical therapy program.  She will go to the clinic on Sunday thru Wednesday. We are taking the whole family this time. So, we will stick around Thursday for Thanksgiving and go to the Macy's Thanksgiving Parade. The girls are all very excited. I am anxious to get Suzy back to her therapist.

The best part is that my sister, Christy, and her whole family will be coming up and joing us for a few days and spending Thanksgiving with us.

The Boozes are Thankful for the progress Suzy has made this year, the family and friends who are always supporting us, and for God who is leading us on this journey.

We pray that you ALL have a peaceful, safe, and joyful Thanksgiving.

Whitney

Good News November 14, 2009

Suzy's eye surgery has been classified as a 'wonderful success'!!

He eye doctor said the eyes look beautiful, and healed very nicely. Also, the eye muscles are now working TOGETHER!

The biggest improvement is that Suzy now has a DOWNWARD GAZE !!!

This is a really huge deal for us. When Suzy used to look around, she could look to the left, the right, and up. She could track an object, but it was not SMOOTH, and she would STOP looking at the object when it got to her nose level, or below her nose.

Now her tracking is smoother, and she has been looking DOWN!!!!!!!! ya-hoo

When Suzy was in her wheelchair, and something was put on her tray, she would not look at it because she could not look DOWN. Therefore, it was completely unfair to expect her to ever be able to play with something when she couldn't even SEE it.

The past few days she has been learning how to look DOWN and see the world below her nose.

Also, our friend, and OT, Josh Adler, suggested we switch the plate of crayons to a plate of chocolate pudding. When Suzy first felt the cold, wet pudding on her hands she looked confused. She was bewildered for about 5 minutes, just exporing this new 'thing'. I helped her get her hand up to her mouth, and she tasted her delicious chocolate fingers. She was still kind of confused. Eventually she got the hang of it. And she LOVED it. She is learning how to dip her fingers in the pudding, and then lick it off. She is having a ball. And this would be the first step to becoming a self-feeder. Thanks Josh.

I posted pictures under "eating pudding'.

Enjoy (Suzy sure did!)

Peace,

Whitney