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





   

   
   
FYI 2011-03-11 06:37:29.0
This is for all the Mommies of children who have g-tubes:

My friend/OT, Josh Adler, along with Benik Medical Supports, created a belt for the g-tube which protects the site and acts as a cover.
Check it out - it looks awesome!

http://www.benik.com/peds/wrap/g-tube

Wish it was around when Suzy had a g-tube.

Also - Suzy is doing MUCH better with Vital Stim. She is tolerating it really well. Today we finish up 2 weeks of treatment (only 3 more to go)!!

2011-03-06 18:47:33.0
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Suzy has a diagnosis of  - oropharyngeal dysphasia.
It means "difficulty swallowing, having trouble moving food from mouth into upper esophagus, and a delay in swallowing."

She has had it since her brain injury. She woke from the coma with an almost nonexistant swallow or suck. She had a feeding tube placed.
We worked really hard to get that suck and swallow back - it took a year.

But for 2 years she has sucked AND swallowed really well. Feeding tube was removed 2 years ago. She eats all table foods and swallows all liquids just fine ..... ..or so we thought.

She had a Video Swallow Study done 2 weeks ago. That involved  placing her in front of an x-ray machine and she was given various liquids to swallow which contained barium so that the whole process showed up on a screen. It showed that she was aspirating droplets into her airway!!!
Yes, we knew her swallow wasn't perfect (she gets spittle into her windpipe and coughs several times); but this Swallow Study was the PITS!! It showed her doing it with every swallow. (It might have had something to do with the fact that she was CRYING!!! and the chair had her LEANING BACKWARDS while trying to swallow.......but I digress).

Anyway - I asked the Doctor what to do.
The Doctor said "she needs to have a feeding tube re-placed and she needs to stop taking anything by mouth."

SERIOUSLY????

NO WAY!!!  I absolutely refused.

Here's the classic symptoms of a child who aspirates:
-frequent pneumonias  -  nope, that's not her
-aversion to food  -  no way. She LOVES to eat.
-failure to thrive/losing weight  -  heavens NO!!
-sickly  -  nope
- "junky" and wet in lungs and throat  -  nope, not her

The Doctor says I'm taking her life into my hands -that at any moment she could choke and die.

Luckily for me I have a great OT who suggested Vital Stim.
We started the vital stim last week.  Suzy will go 4 times a week for 5 weeks to the clinic for the procedure. It involves hooking her throat up to electrodes, turning them on for 45 minutes, and then illiciting a swallow (by feeding her, giving her juice, or sucking on a lollipop.) It's the only FDA approved treatment for dysphagia.

cry_smile Suzy hates it!!

When the treatments end will we go back to CHKD for a repeat Video Swallow Study and hope for some improvement. In the mean time I have continued to feed her as normal  (pray for me).
UpDate 2011-03-03 09:41:40.0
We had a great trip last week to New Jersey. Suzy was a Rock Star and amazed me with how well she performed and how hard she worked.
Azriel (the therapist) saw her twice a day for 5 days. He then gave me 9 exercises to do at home with her.
I uploaded a short (3 minute)  video titled "Video - Medek With Azriel" just in case you had some free time and were interested in watching what she did.wink_smile
She is so freakin' cute!!!

Gracie and Maggie play with her often, and this week they both commented that she feels stronger and a little more stable. (We'll take it).

We are heading back  up in April - and I can't wait.

I'm sending out a prayer request, please. We have 2 little friends that are in the hospital - Brandon and Karli.
Brandon is recovering from brain surgery in Richmond.
And Karli is fighting pneumonia and flu at CHKD.
 They could use extra prayers.

Have a beautiful day.
Whitney
2011-02-23 18:39:49.0
Medek in New Jersey 2011-02-23 18:29:31.0
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Suzy is in LOVE.



I have never seen her so giggly with someone so quickly!
Azriel has her full attention.
We have had 6 sessions with Azriel this week, and she has laughed through all of them.  Sometimes she is laughing so hard she can't concentrate and she falls over.
(foot note: when we did Medek therapy last year in New York she cried and threw up during the entire time).

Suzy's happy - so Mama's happy.

I must admit - I'm pretty smitten, too.

This wonderful man has Suzy doing some things I wouldn't think was possible. I don't know HOW HE DOES it.
But  the big question is - am I able to replicate all of the moves and exercises at home in order for them to do any lasting good???????

But for now, today, we are excited.

Today, he stood Suzy up in front of him on a table.
He held on to her left knee with his left hand.
And with his right hand he held on loosely to her right shoulder.
And then - he LET GO OF HER SHOULDER for a second, then held back on, and let go, and grabbed on, and let go, and so on. And he got up to 10 times of letting go before she fell forward!!
(i'll film a video tomorrow)

So, folks, my baby girl was standing on a table with him holding on to only her knee!
The obvious goal is to make each time longer and the seconds last longer.


Tiny little millistones = an inch stone.
And inch stones = milestones

Also, he had her sitting on the table and he 'steered' her torso by her feet. He held on to her shoes and kept guiding her body to stay up in a TALL sit - see photo.

Next BIG question - How do I convince Azriel to move to Va Beach????