General Discussion & Chat: My mom is in a book that came out this week!, 1 by Woofens

Woofens wrote:
Magpye, thank you so much :)

kbaumle,
Tori is now doing wonderfully. I was a long hard struggle, but to see her today you would never know that she almost died last year. She has a genetic skull defect, her skull was too small for her brain (I also have the condition, as does my other daughter and probably both of my sons) but hers was severe enough to require surgery. On September 10, 2004, she had a posterior fossa decopmression, a C1 laminectomy and a cadaver dura patch put in. Basically, they enlarged the opening at the base of her skull around her spinal cord, removed half of her c1 vertabrea, and put a cadaver patch in the dura (covering of her brain). We came home from the hospital on September 13. On September 17, we were in the midst of the horrible flooding that hit the OH valley last year, and she had developed the b. meningitis, and we couldn't get her to her surgeon, or even a hospital with a pediatric unit. We spent the night in a local hosp, and then were taken by ambulance to Pittsburgh the next day. They put her on massive doses or steriods to combat the meningitis, and antibiotics, and medicine to procect her stomach from the steriods. We came home on September 21. On September 24, she wasn't able to hold anything down, and back to the doctor we went. Her pediatrician admitted her into a local hospital, and she was life flighted to Pittsburgh the following morning for emergency stomach surgery due to a perforation in the stomach caused by the steriods. We spent 20 days in the hospital that time. When I finally brought her home the last time, she had lost almost 20 pounds, and couldn't walk or hardly even hold herself sitting up. She had intensive physical therapy to return to the shape she was in before surgery. The original surgery allowed her to have normal growth purts tho, in the first 6 months following hte surgery, she not only gained back the 20 pounds she lost but also gained over a pound and grew an inch a month!!
To see her today, she just looks like any other 8, almost 9 year old. She does still have some limitations, she is considered mildly retarded, with many other issues, but she is SO much better than she was before. I was told I would never carry a child to term, almost lost her 3 times during my pregnancy, and again after she was born she had apnea spells, and we found her once blue. We named her Victoria Noelle, our Christmas born conqueror (SP?) and she has certainly lived up to her name :)

Thanks so much for sharing your story.... and huge hugs to you and yours
This picture was taken the first day of school this year

Janis