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





   

   
   

January 03, 2010

When the world says "give up" - hope whispers "try it one more time."

 

Suzy, my mom, and myself are leaving tomorrow,  Jan 4, for NY, NY to do another session of Medek therapy with Jonathan. I simply hate leaving the big girls for another week; but I'm excited to get Suzy back into Jonathan's hands.

We plan to go for another 'Medek' week in Jan., a week in Feb., and a week in March. Then we will re-evaluate our next step.

We will be spending the month of April back in Charlotte, NC doing HBOT dives in a deep chamber. Can't wait to get her in there!!

And, we are praying to get back to the Dominican for another infusion of stem cells sometime soon. (maybe in March).

As  you can see - we are NOT giving up. We are "hoping", and giving it all one more try.

Peace,

Whitney

p.s. - new 7 second video - Sue Sitting

 

December 30, 2009

"Be faithful in small things because it is in them that your strength lies."    Mother Teresa

As 2009 ends, I find myself reflecting on the past year. It has been filled with many ups and downs; as I'm sure it has been for you, too. That's life! How we choose to react to those bumps is what defines our happiness/depression. I admit - I haven't been the "master of positivity" this year. I tried. I really did. But - it was hard work. It involved reminding myself daily of the blessings that I have. It meant pointing out how far Suzy has come, instead of dwelling on how far she still has to go. I'm going to resolve to be better at that in 2010.

For starters, I'm not going to list all of our "downs."  There is no need to bring up the negatives. Right?? But I will hit upon the "ups" - blissful sleep started in April, feeding tube removed in Feb., eye-sight vastly improved in Sep., terrific therapy (conductive ed)  program in July, stem cells in June and Oct., fabulous Medek therapy began in Aug., 5th and 2nd grade started in Sep. with wonderful teachers for the girls, and we ended the year with a perfect Christmas with the whole family. All 3 girls were HEALTHY and HAPPY. Nothing else matters.

I have uploaded 2 new videos. One is titled "Success for Suzy." It shows Suzy sitting in her wheelchair with a toy on her tray. I asked her to "pick up the toy and put it into her mouth." (This is very hard for her to do, and she has just started doing it.) She has a look of total concentration on her face. She gets very serious. She is able to pick up the toy and bring it to her mouth 4 out of 5 times!! She finally gets tired and pushed it away. I was so proud of her.

The other video is titled "JOY for Suzy." It shows Suzy laughing. She is happy to be playing, and excited to be with her sisters. She is looking pretty cute!!

Suzy IS a joy, and we feel so blessed to have her still in our lives. 

I pray that you all have a year filled with more "ups" than "downs", and that you join me in 2010 by dwelling more on the positives and less on the negatives.

Thank you for supporting me all year long.

peace in 2010,

Whitney

 

 

Life - it is simply unfair December 22, 2009

Life - it is simply unfair.

My heart is sad. Yesterday, Suzy's little friend, Scout Shekitka, earned her angel's wings. Scout was 2 years old. She was a special child who fought  hard each and every day. Scout lived here in Va. Beach and faced many of the same challenges as Suzy does; but she had a heart that just couldn't keep up any longer.

Please pray for her family - mom, dad, and 2 sisters. Pray that they find some peace as they face their grief.

I can't  pray that Scout 'rests in peace.' She has 'rested' enough here on earth. I pray that she is finally dancing, playing, and singing, and skipping through flowers, and talking to the angels, and running into the arms of God.

Peace, baby Scout

Much Better December 18, 2009

Suzy is so much better. She is well again, and back to her normal self. The past few days she has been happy and playing so well. She has worked hard in therapy. Actually, she LOVES therapy time - the more therapy the better. Her favorite times of the day happens to be when someone is 'working her out'. She likes the activity and the one-on-one attention. She really likes being pushed, and stretched, and moved around. 

(Good thing, because we do a lot of therapy around here!!)

It's so nice to not be going anywhere this month. It's the first month in a long time that we're not traveling. Hooray. We aren't going anywhere until Jan 3rd, when I leave to take Suzy back to NY for a week.

We have company coming this weekend (Chris's brother and his wife.) We're looking forward to spending time with them.

We are very much into the Christmas spirit around here. I love Christmas time, and it's so nice to feel 'alive' again. (Last year, I must admit, I was in a dark place and really couldn't enjoy the holidays. It was our first Christmas with Suzy since her brain injury.)

The girls and I are back to doing lots of holiday baking and sharing our goodies. Maggie LOVES to cook (Gracie, not as much), but we've had fun working in the kitchen together. Gracie would rather be at the stables with the horses and riding. Hopefully she can ride a few extra times during Christmas break.

Our family has also been working every night this week with a local toy drive. We go to different locations around the city, and Gracie and Maggie pass out toys to needy children. The girs have loved this nightly activity. It's been a highlight of our December.

I've been working hard at lining up Suzy's schedule starting in January.  We will be going back to NY for Medek therapy in Jan., Feb., and March (for 5 days at he beginning of each month). We will go to Charlotte, NC to the HBOT center for the first 3 weeks of April. This is during the girls spring break, so they can spend a week down there, too. They have fun in Charlotte each time they go. And we are hoping to go back to get one last treatment of stem cells sometime in the early spring. We have gotten Suzy from a 1 month old to a 6 month old....... now it's time to get her up to a ONE YEAR OLD.  (Oh my goodness - that would be SO EXCITING!!! ) However, I am finally realizing that this is all about  'enjoying the journey' and not focusing on the finish line.

This Christmas the Boozes are concentrating on 2 things - enjoying our family and counting our blessings.

Click on the little picture of us, and make it bigger, and you will see a very 'cheesy' and extremely 'dorky' family.

We pray that your family has a healthy and happy holiday.

Merry Christmas, and thanks for all of your support during the past year.

Peace,

Whitney

December 14, 2009

The poor little princess is sick, and pitiful.

It started last week with a cold on Wednesday. She was then up and hurting for the whole night. Off to the pediatrician we went, where double ear infections were diagnosed (however, her lungs sounded clear!) . She started augmenten, which inevitably led to diarrhea, which has led to a horrible red and burning hiney by Saturday. Thought we had turned the corner yesterday, but she spent most of last night awake and miserable. So, off to the doctor again today.

The other girls have the typical cold, too. Unfortunately for Suzy, being a 'non-typical' child, it's just so much harder for her to be sick. She can't sniff, or blow, or sit up and have a good cough, or even wipe her nose. She can't suck on cough drops, or sip on juice, or point to what hurts. She doesn't even watch T.V. - which makes me sad, because a toddler who is sick is supposed to lay on the sofa watching T.V. all day. 

I'll keep you posted,

Whitney