Outside That Box - Blog / Progress

Wynter and I got 3 hours of sleep before our wake up call and trip in a cab to the hospital at 7am this morning. The staff was amazing! They were incredible with Wynter, very thorough all the way around, and we were not rushed at all, by anyone! They gave her a bag of goodies, including a baby doll whom she named "bailey". The good news is that, so far, there is no damage to her spinal cord! Praise God! But he said that due to the 8mm instability- she is at risk of paralyzation or worse from a fall or other neck/head injury. He also said that over time this in going to increase (get worse) and would probably start pressing on her spinal cord even though it hasn't gotten there yet. Unfortunately, this is not a black and white issue. Wynter has another factor that complicates this issue/surgery...Her IGF1 deficiency. This problem, makes her BONE AGE about half of her chronological age (meaning, she turns 5 on friday, but her bones are only about 2.5 yrs old). WHICH MEANS, that her bones are still soft and that would create complications when putting in screws, result of the surgery and things remaining in place while she healed. So, taking the bone age issue into consideration, and the fact that her spinal cord is not currently in jeopardy, he would like to wait as long as possible before having to do surgery to give her bones time to harden and mature to maximize a better longterm outcome and to minimize other complications. He is however also conceded about how active she is and so put her in a neck brace as you can see here in this picture. He wants to repeat the MRI in 6 months to check her spinal cord and go from there....but he said he really needs her BONE age to be 5 years old or as close to that as possible before we were to do surgery....(unless her spinal cord becomes more of a concern before then- then THAT will trump the bone age and we will proceed). ....So, here again, she never makes anything easy...she has to be one in a million! :) And She Is! We will have to monitor her closely and prevent her from getting hurt while her bones mature, and watch for neurological symptoms until we reach the "right point" to move forward. Thank you all for your prayers, we will continue to keep you all posted! PLEASE JOIN US TO CELEBRATE HER 5th BIRTHDAY! We will get together at the All abilities park in Round Rock (RABB PARK) ON MAY 5th at 10am! Send me your email address and I will add you to the invite! We would love to see you there!!! Thanks again for all your prayers!