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





   

   
   
2008-09-06 05:42:51.0

Summer has ended.

Gracie and Maggie are back in school.     

And Suzy and I are at home 'doing our thing.'  I have been  taking "stock" at how Suzy has done these past 3 months.     My first reaction is to dwell on all that she still can't do.  

However, I feel I should give poor, sweet Suzy a break and concentrate on the progress she has made this summer.

*Suzy now drinks from a sippy cup!

*She smiles more, and laughs easier!

*She is stronger!

*Her seizure activity is gone!

*Her GI System has finally settled down, and she feels better!

*Her head control is better!

*She is developing a personality!

*She makes lots more eye contact, and seems more 'with-it'!

Hooray for our Suzy. We are proud of her!

She still has a long way to go, and I intend to push her toward a full recovery.   So..........what's next?

*STEM CELLS - We leave on Sept. 24th for the Dominican Republic for her second treatment of stem cells.  We are so excited to return.   www.medra.com

*INTENSE THERAPY - We leave Nov. 2nd for 3 weeks to Fort Lauderdale, where Suzy will participate in a program called Therapies4Kids. She will receive 4 hours a day of therapy and wear a 'therasuit' to retrain her muscles and her brain on the correct way to move.   www.therapies4kids.com

*HYPERBARIC OXYGEN THERAPY - Suzy will receive hyperbaric oxygen every day that she is in Fort Lauderdale. She will do 40 "dives". She gets into a 7 foot long chamber for 1 hour, and receives 100% pure oxygen under high pressure.  Hyperbaric Oxygen is supposed to "wake up" the dormant and sick neurons on her brain, and hopefully cause them to work again. A great example of Therapies4Kids and Hyperbaric Oxygen can be found at: http://www.televisionshowvideos.com/video/SeoSEgAldEw/Intensive-Pediatric-Therapy-Therasuit.html                     This video shows a 2 year old boy with encephalitis that presents much like Suzy!

*BEHAVIOURAL THERAPY -We begin this week working with a Pediatric Behavioural Pschologist. Suzy absolutely refuses to be put down out of my arms (or Chris's or Nana's). She will immediately cry hysterically until she throws up. (and this has gotten worse each month). This prevents her from being put in her car-seat, high chair, stander, stroller, or mat.  This annoying behaviour impedes her therapy and her PROGRESS!! I can't wait to get started on this therapy.

*EARLY INTERVENTION CLASSES - In Oct., Suzy and I will attend a weekly 'play class' with other special children and their mommies. We meet at a center that has a 'pre-school' set up for the kids. Suzy might meet a friend!!!

We feel blessed to have so many wonderful opportunites ahead of us. We pray that they work, and send Suzy further down her path of recovery.

Peace,

Whitney

 
2008-08-10 17:19:39.0

Great News -

Suzy had an EEG done on Thursday (the only one she has had since receiving stem cells), and she no longer has ANY seizures or ANY "spikes", which are the brain's indication that there is a potential for seizures !!!!!!!!!!!!!!!!

We can finally wean her OFF her seizure medicine (Keppra).  We consider this a healing and we thank God for his Glory. We are very proud of our little Suzy girl. We are thrilled to get one more medication out of her system.

Also, I read a book this weekend.  "The Shack" by William P. Young.                        

It is an amazing book, and I highly recommend it. It is fiction, but you will wish it was reality. A man's daughter is murdered. He is filled with 'the Great Saddness' for 3 years. He wonders, "Where is God?" So, God asks him to come to The Shack. The man spends an emotional weekend with God, Jesus, and the Holy Spirit. They answer his questions, and try to heal his pain. I loved this book.

Peace,

Whitney

 

2008-08-02 10:04:02.0

There has been NO change in Suzy's MRI !!!   That's GOOD NEWS. We were praying we wouldn't see any further trouble. God answered that prayer.

Up-date on her GI issues - She has been diagnosed with CSID (Congenital Sucrase-Isomaltase Deficiency). It is a VERY rare disorder, and her doctors are investigating it. For now ALL sugars and ALL starches must be removed from her diet. So, there goes her favorite foods - potatoes, rice, corn, oatmeal, cereal, pasta, and anything with sugar. We are at a loss for what to feed this poor baby.

We meet with a Geneticist and an Immunologist next week. Suzy might have a genetic problem that is contributing to the CSID  AND to the severe encephalitis.

Just Another Day In Paradise,

Whitney

2008-07-30 18:09:55.0

Good evening,

Tomorrow Suzy has another MRI at the hospital. This usually makes for a long day. Please join us in praying that she does well, and that nothing has changed for the worse inside her sweet little brain. God will heal her. We must all continue to BELIEVE!! Thank you. 

Peace,

Chris and Whitney

           

2008-07-26 12:18:50.0

Today is July 26th. It's the day I have been dreading. Today marks 6 months since encephalitis hit. It's been 6 months since Suzy went to the hospital in an ambulance, and stayed in a coma.  6 months of pain and suffering that she has had to endure.    6 months of living in this nightmare.

The worst part about July 26th? - Because the doctors always said, "Let's see how the first 6 months go." "The first 6 months is the critical period." "Most of her recovery will be in the first 6 months." "We will get a better picture of Suzy after the first 6 months."

For 6 months I prayed to God. I asked Him to make July 26th a wonderful day. I begged Him to give her abundance recovery. I have wished on shooting stars, picked 4-leaf clovers, and meditated for healing energy.

So, here we are on July 26th. It's been 6 months, and Suzy is still pitiful. She can't hold her head up and look around for more than a few moments. She can't balance herself, or focus on an object for more than seconds. She can't roll over, play, or even sleep without meds. She still cries for the majority of the day.

Has she made progress? yes! Are we grateful for that progress? of course! But do we wish there had been more? you bet!   I wanted to focus on the positive, but today is July 26th.It's been 6 months! Today I can only focus on her future. Will she live her life in a wheelchair? Will she ever color, or suck on a popcicle, or feel grass in her toes? Will she ever get married, or read, or say, "I love you mommy." Will she ever sing, or have her own friends, or chew gum? Will she even live into adulthood? And if she does, who will take care of her when we are old and weak? Who will lift her into the tub, or change her diapers? And, when we die, who will love her as much as we do?

Today is July 26th, and it's been 6 months. Today is a depressing day for me.

Tomorrow, I will put on my 'happy face', and button up my 'positive overcoat', and fasten on my 'badge of courage'. Tomorrow I will encourage Suzy, and push her to succeed, and focus on all of her improvements, and talk about how wonderful she is doing!!

But today........., I will just feel sad.