Do you have a 'very Special Child'?
Then you might be interested in my

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.



November 10, 2009

This weekend I put Suzy in her highchair, and I put a cake-pan filled with crayons in front of her. I was hoping she would think they were entertaining, and would put her hands in the bucket, and feel the crayons.

Yes,.. she liked feeling them. But she liked EATING them better. I couldn't believe it - I turned around to stir the pot of dinner. When I turned back  she was sticking a blue crayon IN HER MOUTH!!  I WAS SO PROUD OF HER!  This is really a big deal for her. Never, in my wildest dreams, did I think I would have to be careful and watch out for what Suzy would STICK IN HER MOUTH.

So, I grabbed my camera, and watched her do in several more times. Just so you understand how wonderful this is - She was completing 3 big tasks - grabbing an object, holding an object for at least a minute, and then getting it into her mouth.

This is a big step towards feeding herself. (Remember,...her neurologist said she would never be able to do this).

So, I called Daddy (who was in GA on a job), and I told him the good news. His reply was, "Great, but why don't you switch the crayons to something edible?".........duh!!!!  Today, I'm going to try pretzal rods. Does anyone have any other suggestions to try?

Go, Suzy, GO!! 

I posted pictures under "eating crayons"

Surgery Complete! November 05, 2009

We had our surgery today, and we're home resting comfortable (well.... we're a bit whiney.... Well....Suzy's a bit 'whiney' and I'm having a 'bit of wine')!!!          

This morning had it's UPS and DOWNS:

The UPS-   -The surgery went very well.

                  -Her doctor is a sweetheart!

The DOWNS - She woke up in the recovery room pretty miserable - shaking, crying and throwing up.

             -I held, rocked , and loved her. Her eyes looked pretty disgusting. (Blood pools under the ball). I have a pretty weak stomach and faint frequently. It put me over the edge when she started crying tears of blood. I ended up on a cot next to Suzy. Sorry Sue. This was a DOWN.

My mom was with me and able to 'pick up the pieces'. Thanks Mom.

         I want to give a BIG THANK YOU to my Dad who came over by 7:00 to be with the big girls and get them to school. (Chris is still out of town). Thanks Dad, I love you!!

And a BIG THANK YOU to my Mom who was here at the crack of dawn to take us to the hospital and stay for the afternoon. Thanks Mom, I love you, too!!

Surgery! November 04, 2009

Tomorrow, Thursday the 5th, Suzy is having eye surgery. She will  be having both eyes operated on by Dr. Lall-Trail at CHKD. He will snip and tighted the muscles surrounding her eye. Her brain damage has effected the eye muscles just as it effected all of the muscles in her body. Her eyes tend to drift outward and upward.

We are hoping the surgery will correct this stabismus, and allow her eyes to stay together and forward with a whole lot less effort on her part.  She should be able to see better, and she will look a whole lot cuter. (a little less 'retarded', if you will.)

So, please keep her in your thoughts tomorrow. We are praying that she handles the anesthesia with no problems, and that she wakes up without too much pain.

She is such a trooper, so I don't expect any problems.



October 29, 2009

So far, so good, around here.

Suzy is doing well since returning from NY.

We were discussing how healthy she has been in 2009. I can't remember a significant illness. This is very rare in these 'flu-times', and even rarer with a child who has neurological damage. We thank the stem cells for this. Stem cells have been proven to raise the immune system by over 500%. Thank God for this.

She has begun to reach, and touch objects with her left arm and hand. Hip-Hip-Hooray. It's very strange to see her do it. I am so used to seeing very little purposeful movements with her arms. (She will just bring them to her mouth, or posture her arms back and forth). Now, if something is placed next to her left side she will 'bat' and it, and laugh.

She is also standing (while supported, of course) without buckling her knees for a little longer - maybe 20-30 seconds at a time.

And, when she starts to fall over from sitting she is pushing out her arms and hands to try and catch herself. She is also starting to handle more weight in her arms for longer periods of time. (In other words, when we put her in a crawl position, and let go, she can hold herself up for about 6 seconds.)

And, the cutest new thing she does is 'blow raspberries'. Spit goes flying and she smiles at herself. She is really developing quite a silly personality.

All very positive changes. We are feeling very fortunate this week, and we love the way that God is shining His goodness through our baby girl.

I posted pictures under "PHOTOS-Standing, Walking & Sitting".




October 24, 2009

We're home from New York City. We had a very successful trip. Suzy worked so hard in therapy. I was so proud of her.  The Medek therepist (Jonathan Orgel) designed a new 'home therapy' program that I am to implement over the next 4 weeks. We will do these exercises together for 45 minutes a session, twice a day. In 4 weeks we will be returning to New York to meet with Jonathan again.

We are going to try to continue this plan for as long as we can (financially and energetically...).  We will do our exercises at home for 4-6 weeks, and then return for some 're-adjustments' and changes. Jonathan will review how the exercises are going, and then either delete some (that have become too easy for her) or add some that are more challenging or focus on new skills.

From now on we will only stay in NY for 5 days. This will  be less stressful on the rest of the family. The girls and I agree that it will be easier on them if I go more often , but for a much shorter stay.

As you can probably tell, Chris and I have decided to be very committed to Medek therapy.  We both feel that this modality will provide Suzy the greatest chance of purposeful motor skills.  I love the therapist, the therapy, and even NY!

I will keep everyone posted of the progress we see.

I added a few more pictures of her under "Medek Therapy- Round 2".