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





   

   
   

passed! April 12, 2011


Passed!



My little squirt passed her Video Swallow Study this morning with flying colors!

5 weeks of Vital Stim Therapy paid off!
Those hours of electricity firing into her neck obviously worked.
Hooray.

Big thank you to her awesome Vital Stim therapist -  Miss Laura B.!
Laura gave up lots of time to help Suzy swallow correctly. And we are so appreciative.
April 10, 2011
We are home from another great week in NJ!regular_smile
Suzy, myself and my mom worked all week doing Medek Physical therapy with Azriel. Suzy did such a good job. She worked hard during all 10 sessions. She also giggled her way through the whole week. There is just something about Azriel that causes Suzy to laugh throughout the entire workout. It is so fun to watch. He tells lots of silly jokes and sings silly songs - and she cracks up.teeth_smile

I told her that I can't come all the way up to NJ just for her to be entertained. whatchutalkingabout_smileShe must have taken me seriously because she also learned some great new skills - she gained a little more balance, she stood longer and more solid without collapsing, she sat up a little straighter, and she is beginning to take over a little more control of her body.star_blue

Now it's my turn to work every day with her doing the exercises, and then we will return to him in 10 weeks.


Azriel Novogrodor is our beautiful new friend. He has a gift with all of the special children that come through his doors. He is patient, gentle, silly and kind. (a child's dream). He believes in these kiddos.star_red

I have posted a 2.5 minute video of Suzy working with Azriel. It shows her working on standing, sitting and laughing. titled - VIDEO- 2nd Medek Session with Azriel.

I want to give a shout out:
 - to MY MOM. heart
She is my rock. My anchor. My "partner in crime."
She is also Suzy's most devoted cheerleader and her biggest fan.
I'm not sure where Suzy would be if Nana hadn't been by our side for the past 3 years.
Nana has accepted Suzy for who she is; yet also continued to believe in her and push her to her full potential
Thank you, Mom.

peace,
Whit


 


DONE!! April 02, 2011

Done! Finshed!
Today we completed our Vital Stim Therapy.
Suzy did 5 weeks of therapy (4 afternoons a week.)
While I had many great visits with The Wonderful Miss Laura B....... I won't miss heading to CHKD every afternoon for an hour.

Suzy did really well with the therapay; however, we will not know the official results until NEXT Tuesday. On April 12th we go back to Children's hospital and have a repeat Video Swallow Study done to see if her delayed swallow has improved.

Tomorrow Suzy and I are heading back to New Jersey for the week. We will be working with Azriel Novogrodor again.

I am tired.
I am feeling the effects of traveling for 3 years.
I am also tired of feeling discouraged.... then hopeful.....then frustrated..... then excited....then devastated....then encouraged.......then let down......etc....etc....etc......

I want to cancel this trip - but something inside of me says that I must go.     (strange and confusing.)
While I know she will never walk; I also know that I saw more progress in the one week we were there  than in most of the other therapies we have tried......
I guess I'm just not quite ready to give up just yet.......

So, I'm off to pack our bags and say some prayers.
I heading off with a positive attitude. And, if it's not all that I wanted, then I will admit defeat and we won't go again.

Peace,
Whitney

March 22, 2011
I'm in LOVE!!heart

(yes, with my amazing and totally sweet husband!! And yes, with my 3 awesome and really cool children.)
But that's not what this is about.


I'm in LOVE with a CHAIR and I just had to SHARE.

I needed a CHAIR to put Suzy in. Something for the HOUSE. Something like a high chair. A chair that she can eat in, and play with toys, and watch tv, and work on her iPad.
 I have been using her adaptive stroller (the very old Ormesa bug which she has basically outgrown). This stroller rolls all around the dirty city (the streets, Wal-mart, the mall......yuck) and then rolls onto my semi-clean kitchen floor or onto the semi-stained den carpet.   - gasp! Plus, I have 'jerry-rigged' the stink out of this chair making it fit her. (We keep her Wheelchair at school.)

So my super OT, Josh Adler, at the wheelchair clinic, ordered me a new chair - and I just have to recommend it to anyone who has a child that needs A CHAIR.

star_blue It's a Rifton Activity chair. It comes fairly plain, but we added all the extra parts - head rest, lateral supports, saddle belt, foot plate, chest strap and a tray.
star_blue It's made of vinyl, so the pudding and mac'n'heese just wipe right off.
star_blue It has hundreds of very EASY knobs for quick adjustments (no wrenches required!)
star_blue It goes up HIGH like a high chair or LOW to the floor.
star_blue And it just supports her so well.

So, if you're looking for a chair - may I suggest the Rifton Activity chair?

Yes - I included lots of photos of the princess under - PHOTOS - New Activity Chair.

peace,
Whitney

March 14, 2011
Bits Of Stuff:




sweet sleep,,,, glorious sleep,,,,,, refreshing, lovely, yummy, restful sleep.......
oh -  how I long for you.cry_smile

One of the painful side effects of having a 'special needs' child is that you can basically 'kiss 8 hours of uninterrupted sleep' goodbye.sad_smile
Suzy has been hit with an allergy attack/ cold symptoms this weekend.
That means Mommy and Daddy are hit with wakeful nights.
She coughs, sneezes and wheezes and needs to be held upright, rocked, fed bottles of juice, and shushed back to sleep (over and over again).
I clocked in about 4 total hours of sleep last night.......

I'm not looking for sympathy - just sharing more of the realities of this journey we are on.
Suzy sleeps thru the night (with the help of a Benedryl and Clonidine cocktail) about 70% of the time. Not bad, considering.
I hear this complaint (lack of sleep) over and over again from parents who have a 'special' child.
It's a commom theme because -
many of our kids can't change positions by themselves, 
OR their O2 levels drop throughout the night,
OR they have seizures,
OR they can't fall back to sleep on their own,
OR they just want company.....
Suzy sleeps thru the night when everything is NORMAL; but throw in a little sickness, a little noise, a hotel room, a later than usual bedtime... you get the drift.

Moving on - Suzy has a new Speech Therapist (whom I am VERY impressed with so far). We've never really had a ST. So, we're just happy to have one.
She did an informal assessment (LOVE those things - NOT!)confused_smile The assessment was based on Language and Communication. Things like Receptive and Exressive language and Cognition.
Suzy scored at a wopping 6-9 month of age.
The ST said she was "confident she could get Suzy's scores higher."
GO SPEECH LADY!!!!!!

Vital Stim - my last post said she hated it. Well, now she doesn't mind it ! Hooray. She cries a tiny bit when the electrodes are first turned on; but then she is JUST FINE - and eats her snack and drinks her juice. She is at a level 9.5 for 45 minutes.

That's the news.
Have a beautiful week.
peace,
Whit