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





   

   
   

November 09, 2008

Greetings from Charlotte, NC!!!

Yes.... we have been on an adventure!   Nana, Suzy and I left for Fort Lauderdale on Sunday (1 week ago) to participate in Therapies4Kids- a therapy and hyperbaric oxygen program. We started on Monday, Nov. 3rd, and we were SO DISAPPOINTED!!  There were several misconceptions about the facility and the program.

So, we found a wonderful hyperbaric oxygen clinic in Charlotte, and they said we could start with them this week.  We flew out of Florida on Tuesday, and landed in North Carolina. We began the program on Wednesday, and we are thrilled. The clinic is great. The oxygen chamber is huge!! The directors are so nice. And this town is adorable. Suzy is tolerating the oxygen treatments beautifully.

FYI - Hyperbaric Oxygen Therapy (HBOT) involves getting into a oxygen chamber. The technicians then descend us to 2.0 atmospheric pressure. 100% pure oxygen is pumped into the chamber. We stay at this pressure for 1 hour. Then, it takes about 15 minutes to ascend to normal pressure. This  90 minute procedure is referred to as a 'dive'.  We do 2 dives a day.  We will complete 40 dives in these 3 weeks. We will then return in 2 months for another 40 dives. And again in May for another 40 dives.  The 100% oxygen applied at deep pressure filles the blood cells, travels past the blood/brain barrier, and revitalizes any dormant or damaged brain cells. HBOT cannot bring back Suzy's destroyed brain cells, but it can heal those that are 'sick' and not performing properly.

(I put in a few pictures of Nana and Suzy in the chamber. I will add to them as I take them.)

Pray for O2 healing.

Peace,

Whitney

BELIEVE October 25, 2008

BELIEVE - That is the word of the day around here. I have decided that that will be the word that the Boozes will live by. I hung an artwork piece saying "believe" in my kitchen. Mom gave me a charm saying "believe". I wrote the word all over my memo book. I say it out loud all day long.

WHY? Because it is the the way we are going to get Suzy well. BELIEVE is the core of the bible. God says to ask Him, BELIEVE in Him, and you shall recieve.  And, the theory behind "The Secret" is to ask the universe for what you want, believe in the universe to provide, and you will receive it.    It sounds simple: ASK, BELIEVE and RECEIVE

Well... it is simple to ask. I ask for Suzy to get well all day long. 

And it is SO wonderful to receive. - I can't wait to receive her healing.

But, the BELIEVING part is the hard one!!!!!  I realized that I have not truly been believing that Suzy will be healthy, happy and whole. I really want it. I yearn for it. I pray so hard for it. But I have not been convinced that she will, so I have not been BELIEVING it with my whole heart. That has to change.

Boy, has it been hard to do. My head is going crazy. My conscience mind says, "Suzy will be happy, healthy, and whole."

And my subconscience mind says,"Whitney, didn't you hear her doctors? They said she will never crawl, or talk, or feed herself." 

My conscience mind says,"Yes she will. She is getting better every day!" 

My subconscience mind shouts,"Are you in denial? Can't you face reality?"

And my NEW conscience mind says, "QUIET!!! I BELIEVE in her. She IS GOING TO BE GREAT!!"

It's exhausting living in my head!

Up-date - Suzy continues to make little steps of improvement. We put up her old Jolly Jumper to see what she could do - and she did GREAT!! I can't believe (oops - I CAN BELIEVE)how well she did. I didn't think she would ever be able to get into it again. But, she is strong enough to support herself in it. Hooray for Suzy.  I posted some pics of her in it.

And she is pushing herself up with her arms when she is leaning on a bench!!!! Fantastic. I also posted pics of that.

And she sat by herself for 30 seconds with her physical therapist on Thursday. AMAZING! Go Little Girl

October 17, 2008

We've been home from the Dominican for 3 weeks.  Most stem cells changes begin after 8 weeks from the injections. However, we are so pleased already. Suzy is much "perkier" than last month. She just seems better. She is holding her head up fairly well (and for longer periods of time). She stands up (kind of) if you support her. (She loves to stand up). She is eating better. - I would love to have her feeding tube removed before '09!

Suzy used to just move her left leg. However, on the plane ride home she began to move her left arm (reaching out with small  purposeful movements). Last week she even started making a few movements with her right arm. And this week I saw her pull up her right leg!!!! So, all 4 extremities show that they have the potential for real, purposeful movements. We are especially excited to see the right-sided movements. The left side of her brain was more damaged, so her right side has been more effected.

She has also decided that she loves the back-pack. So, we strap her onto our back, and can walk around the block, or even go to Food Lion. This is a real sense of freedom for me, because she still HATES being put into a stroller.

And now to complain - she is still SO MUCH work. Chris and I are exhausted. She sleeps deeply from 8:00 - 1:00, and then she is up and down all night long. It's much more difficult than a newborn. She still wants to be held (all 28 pounds) all day long. She is still very sensitive, and cries a lot. She is fussy, and angry, and floppy, and just a mess. We love our little mess dearly, but we sure could use a break.

Suzy, my mom, and I leave in 2 weeks for Fort Lauderdale. We will be at Therapies4Kids for 3 weeks! She will go into a hyperbaric chamber twice a day and breath 100% pure oxygen under deep pressure. And she will receive 3 hours a day of intense physical therapy. www.therapies4kids.com

We are so excited to be going. But, I will miss Chris and the girls so much. (We really lean on each other during this time.) Chris will take wonderful care of Gracie and Maggie, but I sure wish we didn't have to go. Please pray for us.

Peace,

Whitney

September 28, 2008

We're back!!

Suzy, Chris and I arrived home last night at midnight from the Dominican Republic. Suzy received her second stem cell treatment.

She did a fantastic job.

We met a lot more wonderful families who had brought their children for treatment. My first impression as I looked around the hotel lobby was, "What a pitiful group we are. We are desperate parents looking for a cure............"

Upon reflection, my impression changed to, "What a hopeful group we are. We are determined to find a cure!"

How wonderful is that? To change from pitiful and desperate to hopeful and determined!!

Peace,

Whitney

September 17, 2008

So, it's been almost 8 months since Suzy got encephalitis !!  I'm starting to come to terms with the fact that I am a "mom who has a 'special needs' child".  or, we could say I'm a "special needs mom."

Here's the problem:   I don't want to be a "special needs mom." !!!

I want to be a "regular needs mom."

I whine. I get depressed. I cry. I feel sorry for myself.

I was feeling 'that way' the other night. So I opened up the guestbook on this website to read some posts. So many of your entries  fill my heart with love. They give me encouragement and support.   On this particular night there was an entry from my new friend, Teresa. Her words really spoke to my soul, and I felt better.

Here is what she wrote:

Dearest Booze Family, I am grateful to have been honored to spend time in your presence last night. Whitney & Chris, I like to believe that even before you were born God asked for a special couple to volunteer to come to earth and show others the meaning of faith. You both happily volunteered. Then, after some years had passed, God asked for two more volunteers. He needed to send down these two little rays of sunshine to brighten the darkest days of those that may need it. Maggie and Gracie took this position on beautifully. After a few years more, God needed a special person who would be able to bring together people from all over the world united for good. They would be able to teach others by example to be the best they can be no matter how difficult it is. Suzy raised her hand and God chose her. May we all heed the lessons you have each been sent to teach us!
Hugs,
Teresa     
                                                                                            
I realized that I am not a "special needs mom."
And I am not a "regular needs mom."
 
I am just a "special mom." I am special because I have Suzy in my life.
 
A child's ability (or disability) doesn't define who we are. To all of the moms who love their children with ALL of their heart - we are all SPECIAL MOMS!!   
 
Peace,
Whitney