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.



New Glasses...again! September 24, 2009

Hi.                                                                                                                                 I got some new glasses. They are PINK!!

My other ones kept falling into my mouth. I chewed off the nose piece 2 times.

They were uncomfortable, and did not fit well. I was pulling them off.

My new ones are soft and plastic! I can't ruin these. They fit better. They feel better. And they are cute and PINK!!

I love my new, new glasses. Boy, do I look cute. Mommy added some more pictures of me under the link "Suzy got glasses".

 Love - Suzy


September 16, 2009

Bad Day!

I have been wanting the Early Intervention Program (our city program for children under age 3) to provide Suzy with Speech Therapy. So, a speech therapist finally came out to our house today to evaluate Suzy.

She 'tested' Suzy on multiple tasks. Speech therapy isn't just about learning to talk. It's also about communication, and participating in the environment, and making choices, and pushing switches. Suzy was presented with all of these modalities, and then proceeded to fail the entire test. So, it was determined that my darling daughter "is not ready for speech therapy" !!!   WTF?????

Not ready?? duh! If she could comminicate we WOULDN'T NEED Speech Therapy.

So, then I was given a bunch of stuff that I could do to help get her ready over the next several months.  What??? I don't even have time to get dinner ready. How am I going to spend an hour a day working with her on these tasks on top of every other task that I do for her? That's why I wanted someone to come into the house and help me help her!!! Plus, I am NOT a speech therapist. I was not trained to do this. Didn't this lady go to college to become a speech therapist? I have only been in this 'disabled' world for 19 months. (I didn't even KNOW a handicapped child until my daughter became one.) And I spent the first 12 months crying.

To participate in the Speech program she needs to be able to make purposeful movements (either with her hands, feet, or head). So, the recommendation is to get her more Occupational Therapy. Plus, she needs 'more time' to become more cognitive.

And, the words 'severely and profoundly' were used a couple of times. Yes, I KNOW that Suzy has MORE than a mild case of brain damage. (Anyone can just look at her and tell that she is very involved). But, those 2 words are so cut and dry. It's a crappy label. And now I'm in a crappy mood.

Maybe I've been kidding myself - Maybe she isn't ready for Speech Therapy because she is 'severely and profoundly' effected. But, .....if we stop pushing her, will she EVER be ready?  And, why do I have to get her ready? Can't a specialist come over and help me get her ready?

I'm going to bed, and pray that tomorrow is a better day.

I know one thing for sure - Suzy is 'severely' cute, and she has 'profoundly' effected my heart forever.

Thanks for listening to me whine.




September 11, 2009

Little Miss Sunshine got glasses!!!  She looks so cute in them, (and older!)

The glasses are for a stagmatism that was discovered last week. Hopefully this will make her world look a little 'clearer'.   Faces and books should be in focus now. We are thinking that this was ONE of the reasons she doesn't look at everything all the time. Her vision has become SO MUCH BETTER than last summer (when we weren't even sure she could see very much)...... but we still have some issues to resolve.  Already, I think the glasses are helping. The photos of her show that she is looking more at the camera than ever before.  hooray!!

Brain 'recovery' will play a factor in improving the vision even more (just through time and development).

And surgery will be the third factor in improving her vision. We have scheduled her eye surgery for October 22.  All of the muscles and 'muscle connections' in Suzy's body were effected by her brain damage. So, it makes sense that the eye muscles are also "messed up"!! This is why her eye gaze tends to go upward, or sideways. Especially when she becomes tired. She has a harder time keeping her vision straight.  So, the surgery will hopefully help. The surrounding eye muscles will be snipped and/or tightened.  Maybe she won't have to work so hard to control where she wants to see!!!!!

I posted (too many) photos of Suzy under "Suzy's new glasses."   Enjoy.



September 07, 2009

Bummer! Tomorrow Gracie and Maggie start back to school (5th and 2nd grade). Suzy and I will miss them so much. We will miss their company. We will miss having them run in and out with their friends all summer long. I am happy for them (they are so excited to begin school)...........but I am sad for me. They  make the home a happy place......sigh....

So I've been thinking about Suzy's fall plans. One word - BUSY !  I am not sure how to fit it all in. Luckily I have Chris (he is very helpful); but he is going to be traveling a lot this fall. So the next best thing is getting super help from my mom and Jenny. Together, I'm hoping we can make it work.

Suzy's days will consist of:

* her MEDEK exercises twice a day (45 minutes each)

*a dive in the hyperbaric chamber (1 hour 15 minutes) for 40 days straight.  She hasn't been diving for about a month.

*traditional PT ( 4 times a week with Miss Karen)

*OT with Josh and ST with Brad

**a daily NAP (praise God)

*30 minutes in the stander

*30 minutes in her walker

*15 minutes in her Wingbo

* 45 minutes of conductive education exercises

*On Thursdays she will attend pre-school for 2 hours. (Mom or Jenny stays with her)

Plus, this fall she will participate in another 5 week session of Conductive Education with Miss Judit! I am very excited to start this.

Wow I'm exhausted just typing it all up.

Somehow, we will get through it all. We always do. God gives me the energy to persevere. He is good. God fills my heart with love and patience. Somehow, He knows what I need the most.







leaving again! August 26, 2009

Tomorrow we are taking Suzy back for another round of stem cells. She will receive the infusion on Friday, Aug. 28th.

I am happy that we have the opportunity to do this again; but, I am nervous we will not get the results we want. The past year and a half has been such an exhausting roller coaster. We pray for recovery,

we try something new,

we have a set-back,

we see some good changes,

we pray and try some more,

we keep going, and working and trying, and praying, and searching for the new and miraculous cure...............

I am grateful for the recovery we have received, but it's just not enough.


It's been a very busy summer. I have worked so hard to get Suzy better, and still give the other girls all the attention they deserve. 

I guess I am just feeling tired right now. Tomorrow is another new day. So, I will continue the 'fight'.