January 1, 2009
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 FAR –Around 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.