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.
Today marks another aniversary - A year and a half ago, on Jan. 26, 2008, Suzy contracted the HHV-6 virus and we lost our baby girl!
She is 2 1/2 years old now.
Not a day goes by that I don't think about what she should be like. I just can't help myself. Being 2 is simply the cutest age ever!!! I have always LOVED toddlers. Being 2 is supposed to be a wonderful and delightful time. It's a time to discover the big and exciting world. And giggle for hours, and have big temper tantrums, and talk with an adorable voice, and learn to sing the ABC Song. It's supposed to be a time of testing limits, and playing in the dirt, and getting skinned knees, and driving your mommy nuts in the gracery store, and then running into Daddy's arms when he comes home. oh......how I miss ALL of this!
So yes, today I am sad for what happened to our sweet baby girl. I feel so sorry for her.
Anyway.....we have finished our 5 week summer program, Conductive Education. We just loved it. Suzy did very well. She learned how to:
-open and close her hand when asked
-hold and lift an object
- follow the teacher around the classroom with her eyes and by turning her head
close her lips when asked to kiss (she's only done this 3 times - but it's a start)
-to hold a crawl position (for a few seconds)
-to sit on a bench with her elbows resting on the table by herself (for a few minutes)
-to hold a stick and bang it on the table
-to 'bare weight' on her legs for longer periods of time
The class is very expensive ($800.00 per week), but we really want to participate in another session in the fall. We will be working on making that happen.
So, on this beautiful Sunday morning, we thank God for His presence in our lives, for the gift of Suzy Beth, and for the opportunities He has given us to help heal her.
I posted a video of Suzy. You will be able to see some of what she is capable of doing. (It is hard to tell from a picture what Suzy is really like.)
Ths video shows Suzy on a normal afternoon, playing around with Mommy. You can see how happy she usually is. You can see her propped up on a red bolster, trying to push and crawl. (Notice how her arms don't cooperate with her!! -But her feet are working hard!!)
And you can see her hanging out in her exersaucer. Suzy can hold her head up, but she always wants to throw her head backwards! She rests her head on her neck, and looks up to the ceiling. In the video I am constantly reminding her to "put your head down." I am THRILLED that she can understand and follow that commmand! That's some BIG progress this summer.
No..... Suzy isn't perfect.
Yes..... she still has a long way to go.
But.....she sure looks better than the vegetable they predicted she would be.
Enjoy the 3 minutes with Suzy.
What's In A Name?
Lately, I've been wondering what to 'call' Suzy. (we call her lots of things - like Love Bug, Sugar Bear, Cutie Pie, and Angel Face)........
but I want to know how to explain her. I need a short and simple way to tell the public what's wrong with her.
Wherever we go, Suzy gets 'noticed' more. She gets questionable 'looks' and curious stares. I assume that's because she is getting bigger, and older, and because we take her more and more places. People no longer pass her and think that she's a sleepy baby. She now looks like a disabled toddler (especially in her wheelchair). I can see it in their faces. They are wondering, "What's wrong with that little girl?" "Is she normal?" "What happened to her?"
Do I say, "She suffered encephalitis caused by the HHV-6 Virus, which then caused moderate global brain damage, which led to a 2 week coma followed up by severe cognitive and motor delays." ?????
OR, do I just sum it up in a word or two? And if so, what's the politically correct term?
Is she "Handicapped,
Does she have "Brain Damage,
Special Needs". ????
Or do I say, "She suffered a Brain Injury resulting in Cerebral Palsy and Mental Retardation" ??
Do I say, "She suffers from Severe Cuteness resulting in Moderate Spoildness" ??
I know, some of you are saying, "Whitney, you don't owe these people any explanation."
I realize that. However, I am a social person. I love to talk about Suzy. I WANT to talk about her. And most of these people aren't being nosey and rude. Most are simply curious and kind. Besides, I'm very proud of Suzy. She deserves to be talked about. I'm proud of how far she's come. And I'm proud of her smile - in spite of all the suffering she's endured.
So....what do I say to the curious people? How do I define Suzy in a few short sentences?..............
Maybe I just say:
"She's a Work In Progress. The most beautiful flowers take the longest to bloom."
Suzy's new litttle wheelchair arrived.
It was a 'bittersweet' day.
My stomach was sick. I just can't believe that I have a child who needs this chair! My heart was hurting. I have prayed every day for 17 months. Why hasn't God fixed her? She should be running and skipping..... not being pushed in a chair. My soul was sad.
yes, we have her first wheelchair.
yes, this totally stinks.
But, if I'm going to be positive about it, I will admit that we really like the chair. It is more like a glorified stroller than a wheelchair. It is very light and easy to use. It fits Suzy perfectly!! She sits up so straight and tall in it. It gives her all of the support she needs in her trunk, sides, and head. It has a great tray that fits onto the front that I can put toys and books on. And she looks absolutely adorable in it!
I put pictures under: PHOTOS - new wheelchair. Enjoy.
This week Suzy started her summer program, Pediatric Life Skills. This is a 5 week course, 5 days a week, 2 hours a day, for children with special needs. The program uses a form of therapy called Conductive Education, which has been brought over to the states from Hungary. Her teacher, Judit Roth, is a Hungarian Conductor, and she is amazing. So far Suzy is doing very well in the class. We will be working on gaining balance, isolating muscle groups, stregthening her core muscles, sitting, reaching and grabbing, and pulling up to stand. There is only 2 other children in her class.!! And, of course, her wonderful and amazing Nana goes with us. (thanks, Mom).
Tomorrow Chris and I leave the country (with Suzy) to get her another round of stem cells. We pray the cells will make some more positive changes in her little brain.
I put pictures of her summer program under - PHOTOS - Pediatric Life Skill. (enjoy)
Thanks for checking in on us. We will continue to keep you up-dated on her activities, treatments, and progress.