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





   

   
   

YEAR-IN-REVIEW January 01, 2009

January 1, 2009

 SUZY’S  ‘YEAR-IN-REVIEW’

 WHAT HAPPENED -  11 months ago, on Jan. 26th, 2007, our adorable baby girl contracted viral encephalitis. We found her in her crib, unconscious, having seizures, and clinging to life. She was rushed to the ER, where she spent 2 weeks in a coma. Her doctors were not sure she would live. We spent another 2 months in the hospital. She had surgery to put a feeding tube into her stomach. We finally brought her home on April 1st.  Her MRI reveled significant global brain damage.

HER PROGNOSIS – “it will be miraculous if Suzy progresses to much more than a vegetative state. She probably won’t ever sit by herself, communicate, feed herself, walk, play with toys, or enjoy much quality of life.”  We were told, "there is a ‘great’ institution in the neighboring city that would take her." (This was NOT an option for us).

HER SUMMER – Suzy spent the summer crying!! She was just plain miserable. I spent the summer crying!! I was just plain miserable. We had lost our precious baby.

Suzy couldn’t laugh, eat, suck, hold up her head, bear weight on her legs, move her arms, get her hands into her mouth, focus with her eyes, or pay attention to toys or people.

She threw up 8 times per day, had chronic diarrhea, lost weight, and could NOT be put down.

We went to several doctor appointments each week trying desperately to make her feel better. My heart was simply breaking into pieces. 

 

HER TREATMENTS – We just hated the neurologist's prognosis. We felt we needed to do everything we could think of to prove him wrong.

Suzy’s recovery plan in ’08 included:

1. Traditional therapy 4 times per week – OT and PT

2. AMRI – An advanced high powered magnetic therapy – 400 hours

3. Stem Cells – 2 stem cell infusions in ’08 (down in the Dominican Republic)

4. Hyperbaric Oxygen Therapy – 40 treatments, or 'dives',  in Nov. in NC

5. Prayer and Belief

 SUZY’S RECOVERY SO FARAround Sept.1 we FINALLY started seeing some good progress.

1.She smiles and laughs. She likes to play (especially with her sisters), and be tickled, and bounce on Daddy’s knee.                                   

2. She developed a personality. She is adorable. 

3.She stopped puking. She feels so much better.  

4. She began sucking and eating. We are done with her feeding tube.  

5. She can hold her head up for several total hours each day.

6. She is making eye contact, and tracking objects, and starting to see things. 

7. She is getting stronger. She can support her trunk much better. 

8. She can bear weight on her legs for 30 seconds when supported under her arms.

9. She is initiating steps, (right,left,right,left, etc.) when supported under her arms. 

10. She can be propped with her arms and sit for a few minutes! (‘prop-sitting’)

Hooray! Hooray! We are making progress each day!!  We are SO PROUD OF HER!

 2009 TREATMENTS –                                                1. Stem Cells - 3 more infusions. 2. Hyperbaric Oxygen - 120 more treatments 3. Therasuit Therapy - 3 week program in Richmond 4. Tradional PT and OT 4x per week

2009 GOALS – Suzy will:

1. sit all by herself!

2. reach out, pick up something, and put it into her mouth, or just look at it.

3. ride in a carseat or stroller without screaming and crying.

4. watch T.V. - she will be able to pay attention to it, and focus on it.

5. sleep through the night

6. vocalize - babble, or make some noises besides crying or laughing.

                                                            

                                                                    Suzy is a joy to our family. We all love her so much. We are lifted up by the sound of her laughter, and we are inspired by her determination. She is our fighter, and we will support her forever. She is teaching us so much about patience, and love, and the power of family.

Thank you Suzy, for just being YOU! We love you.

  

December 29, 2008

In the middle of our Christmas afternoon, Suzy fell peacefully asleep in her PopPop's arms. Too cute.

Christmas was nice. Everyone was healthy, which certainly makes life better. I coudn't help but feel 'bittersweet' about the whole holidays. It was a joy to have Suzy with us, and I am grateful for her life.............

however, I kept wishing she could truly enjoy Christmas. She is 20 months old, and she should be running around getting into messes, and eating too much candy, and playing with boxes, and excited about Santa!!!

oh well............maybe next Christmas. (I just have to Believe).

Right now we're back in Charlottte, NC!! We have come to get Suzy a second round of hyperbaric oxygen therapy. She will do 40 more dives over the next 3 weeks.

Peace,

Whitney

Dear Santa December 14, 2008

Oh...... how I wish there was a Santa Claus. I would send him my Christmas Wish List.

Dear Santa, 

All I want for Christmas is:

1. SITTING - I would love for Suzy to sit by herself. The ability to sit unassisted shows good potential in the ability to balance and walk in the future.

2. HOLDING & REACHING - If only Suzy could hold a toy and put it in her mouth. Being able to reach out and grab an object opens up the world of independent play.

3. ENERGY - I'm so tired, both physically and mentally. This year has been so exhausting. No parent should have to help their child recover from a brain injury.

4.  $66,000.00 - We need $66,000.00 for Suzy's treatments in 2009. We want to get 3 more stem cell infusions. And we want to go to NC 3 more times for Hyperbaric Oxygen Therapy.

5. ACCEPTANCE - I wish I could accept Suzy just as she is. There is a very real possibility that she will remain mentally retarded and physically handicapped. I hope I can learn to accept this and still have a life full of happiness and joy.

Thank you Santa !!

Peace,

Whitney 

We're Home! November 26, 2008

We made it home !! Hooray.

Suzy and I returned from Charlotte late last night (just in time for Thanksgiving)!! We are so happy to be here. We were gone for 3 and a half weeks. I missed my girls so much.

We are thrilled to have had the opportunity to get Hyperbaric Oxygen. We have seen progress in  Suzy the past 3 weeks. So, we will be returning on December 29th for another 20 days. We will finish with those 40 "dives" on January 20th. Then, the whole family will be taking Suzy back to the Dominican Republic on January 30th for her third stem cell transfusion.

Our family has a lot to be thankful for this Thanksgiving - Suzy is alive, and making progress every month!!! Our family is together, and Gracie and Maggie are happy and doing so well. And we are thankful for our wonderful friends and family who continue to be an amazing support system.

Happy Thanksgiving!

Whitney and Chris

Wonderful Improvements November 20, 2008

Hello everyone! We are still in Charlotte, NC doing our Hyperbaric Oxygen Therapy. We have completed 30 of the 40 dives. Suzy is doing great!! And I am excited about the progress she has shown so far.

The picture is of her EATING a peanut butter and jelly sandwhich and chunks of bananas.(and SITTING IN HER HIGHCHAIR.)  Last week she just started eating everything I put in her mouth. She has fruit and cereal for breakfast, and spaghetti o's, and cottage cheese, and crackers, olives, chicken, pears, pasta, etc.  I have not used her feeding tube for 3 days!!!

Yesterday, I put  her in the SHOPPING CART at Target! She sat there, holding her head up, for 45 minutes EATING GOLDFISH!!!!!!!  I was so very impressed.

She has also had a major attitude improvement. She will ride in her carseat for short trips. She hangs out in her exersaucer. She rides in the back-pack in the mall. AND SHE PLAYS!!!  She loves to get in the oxygen chamber with me and just PLAY. She now likes to do some little games, like peek-a-boo, and tickling, and rolling.  I no longer need to video tape her laughing because she does it all the time!!

She can occasionally get her right hand into her mouth so she can suck on her fingers. This is a wonderful step because she will be able to 'self-sooth'.

And she is off ALL MEDICATIONS (except her vitamins.)

Thank you to everyone who is supporting us in this Oxygen and Stem Cell journey. Suzy loves you all.

Peace,

Whitney