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





   

   
   

June 02, 2008

WE'RE BACK!!  Suzy, Chris and I have returned from the Dominican Republic. Suzy had her first infusion of stem cells on Saturday. She did great!

The hospital was clean. The staff was friendly. The doctor was professional, personal, confident and compassionate.         

We actually had a really nice trip.                        

We met several amazing families who had come with their special children. Some were back for a second treatment because they have witnessed significant recovery. (We are hoping to take Suzy 3 more times). We even heard of famous people who have been to this clinic. And we had the pleasure of eating breakfast Sunday with a notorious (and MOST charming) author.  -We pray for his recovery.

So..... now we wait and pray and observe her like a science experiment. It could take several months for the infantile cells to mature to adult cells. However, some families notice results in just a few weeks.

We'll keep you posted.

PEACE,                                                             

Whitney and Chris

SATURDAY, MAY 17, 2008 01:11 PM, CDT

It's been 16 weeks since Suzy got sick!! She continues to fight hard for a recovery. She is still totally precious, and still so very pitiful.

We completed our first round of 200 hours at the magnetic institute! We have seen some very small, but nice, pieces of recovery. She is more aware of her surroundings, sleeps much better, smiles easier, and is attempting to move a bit more.

I am finally coming to terms with the fact that her doctors (here in the states) can do nothing to help her become better. This has been a painful and frightening concept for me to believe. We have been told to accept the fact that Suzy will be disabled for the rest of her life. How do parents deal with this news?

We decided to deal with it by fighting, and praying, and by leaving this country. The only hope for Suzy to have a somewhat 'normal' life is to be infused with stem cells. We have researched this idea for HOURS. We have spoken with people around the world who are getting great results. There is hope that an infusion of stem cells might take over the damaged parts of her brain and begin to form new brain tissue.

Chris, Suzy and I will be leaving in 2 weeks to fly to a hospital in the Dominican Republic. She will get stem cells intraveneously on Sat., May 31st. We will return again in the fall for another treatment. We will also do another 200 hours at the magnetic institute in July.

So, there's our plan!! Please pray for us. Our family is doing much better. We are all crying less, and smiling more. God is being good to us. We still have our amazing baby, and now we have HOPE that she might come back to us one day.

(We want to thank all of you who have asked to help with a financial gift. We haven't ignored you. We have just been embarressed by this request and unsure how to handle it. A friend has asked if he could set up a trust fund in Suzy's name at a local bank. This would be a way to collect donations and use them directly for her medical expenses. We will post the details next week.)

PEACE,

Whitney

 

TUESDAY, MAY 06, 2008 08:59 PM, CDT

Hi.

Tomorrow, Wed. the 7th, we will be in CHKD. Suzy is going back under general anesthesia to have an EGD (endoscopy - upper GI scope) AND a colonoscopy.

She will be getting 'scoped' up one way and down another. Maybe we can find out what has been upsetting her GI system. Wish us loads of luck.

Peace,

Whitney

 

WEDNESDAY, APRIL 30, 2008 08:49 PM, CDT

Hi -

Suzy has begun her new treatment program -Magnetic Molecular Energizer (utilizing the stem cells within her body) !!!!!!!!!

So far, so good!!

People have asked me what this process involves. Here's how it works:

Suzy must spend 200 hours under a powerful magnet, on a special table. In order for her to accomplish this, she should be asleep. And we need to try and get this finished in about 2 to 3 weeks. So, every night Suzy and I come to the clinic (with my amazing mom), and we spend the night here. We also return every afternoon for her nap. The clinic is located across the street from Bayside Hospital. It's a gorgeous facility, and truly feels like a home away from home.

We pay for the treatment 'by the hour', and it's not covered by insurance. (bummer) But we are totally commited, and feel it's an amazing process that really could eventually help Suzy regain some wonderful recovery.

After we complete the 200 hours, we are to take 6-8 weeks off. Suzy is to rest and produce more stem cells. Then we will return for another 200 hours. After that session we will evaluate her recovery and then decide if we are going out of the country for a fetal stem cell transfusion. (we will also evaluate our bank account.....)

So, that's what the Boozes are up to. Once again Gracie and Maggie are missing their mom, but they continue to amaze Chris and I with their strength and patience. They make us very proud!!!

We are excited to have a plan. Please continue to pray.

Peace,

Whitney

 

FRIDAY, APRIL 25, 2008 08:16 AM, CDT

Poor little Suzy spent the day in the ER at CHKD again yesterday. Her pediatrician sent her there after hearing how sick she had become.

Suzy had a fever of 103, unconsolable crying, throwing up for 3 days, muscle stiffness, dehydration, and misery.

The ER did chest and belly x-rays, an EEG, blood work, a bag of fluids, morphine, etc........

It's been concluded she has a yucky virus, severe reflux, and withdrawl symptoms due to not being able to keep her meds down for 2 days.

So we have been unable to begin her new treatment program. Hopefully she will be better today and we can begin soon.

Still no miracle for Suzy, but we're hopeful that it's right around the corner!!!!!!!!!!!!!!!!!!

Peace,

Whitney

 

SUNDAY, APRIL 20, 2008 04:37 PM, CDT

Stem Cells - The Future In Medicine

The Boozes are getting ready for a busy couple of weeks. We are fortunate enough to have Suzy accepted into a new and innovative program called AMRI - Advanced Magnetic Research Institute. There are 6 of these clinics in the country, and one just happens to be in Va. Beach!

AMRI will use MME (Magnetic Molecular Energizer) to accelerate the electron transfer in her body's atoms. This process will use Suzy's own stem cells! The goal is for Suzy's stem cells to be drawn to her brain, and then help repair the damaged brain tissue.

The program is in the research stage and is very "cutting edge." There are certainly no guarantees. However, it is a safe procedure. We have nothing to lose but time and money.

My amazing mom had dedicated herself to helping me for the next 2 intense weeks of this therapy!

My amazing husband will again take over all of the duties of happy homeaker. He does an incredible job.

Please continue to pray for some wonderful recovery for Suzy over the next few weeks.

peace,

Whitney

FRIDAY, APRIL 18, 2008 01:40 PM, CDT

It's been 12 long weeks since encephalitis attacked our baby !!! I still can't believe that our family is involved in such a tragedy. I'm not sure I will ever get used to this.

We met with Suzy's neurologist this week. (...and I'm still crying buckets of tears everyday.) He read over her devastating MRI and looked at her clinical picture (the way she appears today), and said, "It will be a miracle if Suzy ever walks or talks." He also said he would be "surprised" if she could ever play with toys or feed herself.

So, what the Booze family is doing is PRAYING FOR A MIRACLE!! And we are asking all of you to please help us by praying for our miracle. We are not going to give up on this baby. We are working hard every day to get her the most recovery we can get. If anyone can offer us any help or hope we would love to hear about it. We know that children's brains are a mystery, and we have been told over and over again that neurologists are proven wrong every day. We want to prove Dr. Toor wrong!!!

Chris and I want to thank everyone out there that has helped us. We could NOT get through this without the thoughts, prayers, meals, babysitting, and words of encouragement from all of you!! We have never been so needy, and we have never received so much.

Peace,

Whitney

 

THURSDAY, APRIL 10, 2008 05:54 PM, CDT

The doctor called today with Suzy's MRI results. Unfortunately, her brain shows continued atrophy. In other words, she has lost more "white matter" since her last MRI in February.

We are very dissappointed and sad with this news, but we will continue on the same path that we have been. Her therapy and treatment will remain the same. We will continue to be hopeful.

Suzy also spent the morning crying in pain. I took her to the doctor this afternoon, and he confirmed that she has an ear infection!!!! Poor baby.

How much more can this little baby take?

 

 

TUESDAY, APRIL 08, 2008 07:58 PM, CDT

Suzy is having another MRI done tomorrow, Wednesday, April 9th.

Please pray for a good report.

Thanks,

Whitney

 

MONDAY, APRIL 07, 2008 05:09 PM, CDT

Suzy is feeling better !!! Hooray !!!

*She hasn't thrown up all weekend.

*She is sleeping better.

*She has given us a few smiles.

*She is eating more.

Thanks for the thoughts and prayers.

 

THURSDAY, APRIL 03, 2008 06:25 PM, CDT

I was hoping to send out good news by this weekend....... however, things aren't very good for Suzy. Actually, she is doing worse. We spent the day today back at the ER. We took Suzy to the hospital today to get some answers. She continues to cry louder every day (I didn't believe that was possible), she seems to be in so much pain (is it her broken femur? or her G-tube site? or her stiff and painful muscles?) She is throwing up her feeds, and gags all the time. And her neurological development is no better. She screams and she is just so miserable. My heart aches for her 24 hours a day.

To help correct some of her issues we:

-x-rayed her leg and belly

-switched her med from Ativan to Valium

-put her on Prilosec for reflux

-gave her a shot of morphine

-changed her feeding schedule

And, it was decided that she has a new virus upsetting her GI system.

It's been another difficult day, week, even couple of weeks for our little Baby.

She is fighting for a recovery, and we are still so proud of her.

Peace,

Whitney

SATURDAY, MARCH 29, 2008 03:02 PM, CDT

We've been home from the hospital for 1 week. There have been ups and downs!!

The biggest 'down' was having her right femur broken. The orthopedist said that her new PT likely used too much pressure (force) and cracked her femur. Now she has her whole leg in a splint, and it's effecting her therapy and range of motion. We won't ever go back to THAT therapist.

2nd down - Suzy cries most of the time. She seems to be miserable, but nobody can figure out why. She also wants to be held every moment.

3rd down - She wakes up every night at 3:00 am for hours.

4th down - I was hoping for miracles once she came home. I expected her to suddenly start recovering.....

The UP'S are -

It's a joy to be with Gracie and Maggie again.

It's a joy to be a family again.

It's a joy to sleep in my own bed again.

I want to take this moment to say "Thank you" to my mom. Without her, and Chris, I would not have made it through this ordeal. My mom has been my strength and my salvation. She has provided me with hours of encouragement, help, laughter, and sunshine. She has been with me and Suzy for 63 days!!!! She never missed a day. When I prayed to God, "Please, help me", He answered that prayer by sending me my mom.

Thank you, Mom, from the bottom of my heart.

 

p.s. - I included a new picture

 

 

MONDAY, MARCH 24, 2008 06:05 PM, CDT

Hello -

Whitney has asked me to write a quick update for her as Chris left town this afternoon for the week and she is on her way home right now from the Emergency Room at CHKD. Suzy has a small fracture in her femur bone and now has to wear a removable cast. What started out as a great day with Suzy sleeping thru the night last night ended with a long afternoon in the ER. Suzy was starting to cry less at home and had two good outpatient therapy sessions this morning, so let's all just hope her fractured leg doesn't stop her from continuing to make improvements!

Take care and please keep them in your thoughts,

Marla

 

FRIDAY, MARCH 21, 2008 08:40 PM, CDT
We're HOME !!!!!!!

Oh, what a joyful day.

It's been 8 long weeks, but we're finally together.

Suzy is doing good. She doesn't seem to have much pain from her surgery. And Gracie and Maggie are excited to be a family again.

 

 

THURSDAY, MARCH 20, 2008 08:52 PM, CDT

Good Thursday evening:

Suzy had her G-tube surgery this afternoon and everything went fine. She was beginning to wake up when I left the hospital around 4PM. She's receiving morphine every two hours for pain, and we don't know how well she will sleep tonight, but at least our anxiety over her surgery is over. Her first feeding through it should be later on tonight. For those of you, like me, who have never seen one, a G-tube looks a lot like the air valve on a beachball and is about the size of a dime. The surgery went through her belly button and the tube was placed about 2" to one side.

Here's the best news since January 26...barring any overnight complications from the surgery, she's coming home tomorrow afternoon...to stay! Gracie and Maggie can't believe that their family will be together again tomorrow. We have a discharge meeting with her medical team at 1PM, then it's moving time.

Outpatient therapy will begin next week, but we're not sure yet if that means Monday morning. Mom and daughter may need a few "vacation days!" The address of Suzy's new crib is:

2412 Caitlan Loch Lane, Virginia Beach, VA 23456

Thank you all for caring. Reading the guestbook entries brightens our days.

Chris

 

 

MONDAY, MARCH 17, 2008 08:51 PM, CDT

Good Monday evening:

Day 51 in the hospital was not a good one for our little Suzy. Actually it started yesterday, her TLOA day (therapeutic leave of absence). Before we could pick-up Whit and Suzy at the hospital, Suzy had pulled out her feeding tube twice. We could tell that she didn't feel good and she had a low fever. Finally late in the day, she gagged and out came the tube for the third time. We returned both girls to the hospital sobbing around 8 PM.

To solve this NG feeding tube problem, we have decided to have them put a permanent tube in her belly later this week, probably Thursday. It's a minor surgical procedure. The expectation is for Suzy to have this G tube in place for 6-12 months, at which time it is completely removable and leaves just a small scar. The doctors describe the healing process from a G tube much like ear piercing...after several weeks of non-use, the hole closes back in. I told Whit that Suzy will simply have two belly buttons!

Anyway, back to today. The doctors want to know if the HHV6 virus is still replicating within her DNA, so they ordered another round of labs this morning...drawing blood from Suzy has proven to be a difficult and painful procedure. Afterwards, they did an upper GI exam to better locate her stomach for the G tube location. This involved strapping her down to a table while she attempted to swallow some barium. Suzy passed the tests...and so did Whit...BARELY! The remainder of the afternoon was better for all parties.

We are planning on leaving the hospital as soon as possible after her surgery...sometime between Friday and Sunday. Suzy's had enough, Whit's lived in that hospital room too long, and Gracie and Maggie need their mom back. Plus this single parent routine is killing me! Starting next week, Suzy will do out-patient therapy. Whitney has done an amazing job researching and scheduling therapy sessions once we leave the hospital. It will continue to be a full time job for her driving Suzy around the city in pursuit of the best therapists.

Finally, Suzy's recovery status. I'm a number's guy, so let me describe it this way. On a scale of 1-100 with 1 being birth and 100 being completely normal for her 13 months of age, I would put her at about a 10. This is up from her admission grade of 2, but Whitney and I can't help but be frustrated, angry, resentful, tired, scared, and so saddened. Suzy still won't engage with anyone, doesn't track with her eyes, and has minimal purposeful movements. We continue to hope for and expect a normal life for Suzy, but our spirits are in need of some quicker healing.

Thank you all for caring.

Chris

FRIDAY, MARCH 14, 2008 08:23 AM, CDT

Good morning.

Wednesday we had to put Suzy's feeding tube back in. It goes thru her nose and into her stomach. She was not taking in the volume of liquids that she needs, and she was becoming dehydrated. Her meds will also go into the tube. She was REALLY beginning to hate having anything put into her mouth (oral aversion), most likely because there were so many yucky meds going in.

So..we do NOT feel like this is a set-back. Actually, it's just the opposite. It's a way for Suzy to move forward more easily. Now she can get all of the formula and nutrients necessary to re-connect brain pathways!!!

Peace,

Whitney

 

TUESDAY, MARCH 11, 2008 07:49 AM, CDT

Good morning.

We took Suzy home again Sunday for 8 hours. She had her calmest day ever. (Maybe she's trying to tell us something!- Is she ready to get out of this hospital??)Gracie and Maggie loved having her home.

We will probably be here another week or 2. Then we go home and start 3 hours a day of out-patient therapy. Suzy has a long, hard road to climb, but we know she can do it.

I added 2 pictures - one with her PopPop, and one with her sucking on a pretzal rod.

Peace,

Whitney

 

THURSDAY, MARCH 06, 2008 08:42 PM, CST

Thanks for all of the positve energy coming our way. Suzy smiled one more time today (for her rehab therapist.) So, that's once for my brother and once for Josh. None for Mommy,... but I'll take it anyway I can get it!!

She is getting a little more head control - hooray.

She is trying so hard to come back! And she is still adorable.

Whitney