Abbys Surgery and Recovery
Because Abbys condition is rare they will be doing the surgery 5 hours from home at St Louis Childrens because of their attached Rett Clinic..
Unfortunately scoliosis is a common condition associated with Rett Sydrome due to extreme low muscle tone and Neurological misfiring.
Abby is 12 years old and recently went through the normal, big growth spurt for her age. Suddenly her scoliosis, which had been stable grew out of control. It caused her hip to come out of place, stress fractures, loss of mobilty and constant pain, that she cannot express properly as she is Non Verbal.
Her Ortho team decided that surgery could not be held off any longer as her right rib cage is sitting on her hip.
since the surgery will be so far from home and they are a one income household we are seeking funds for travel and hotel expenses for the next few months as they travel back and forth preparing and testing for the surgery and the surgery itself.
Girls with Rett Syndrome are known to take longer to recover from this surgery and since they are so far from home they will keep her a bit longer so she can travel once it is safe.
Her mother will need funds for gas, hotel beforehand for several trips. Food for herself from anywhere to a few weeks to 6 weeks or more.
Once Abby gets home we will need to set up a hospital type environment for her and would like to be able to purchase the things that insurance won't cover.
Cleaning supplies, positioning equipment, a special bean bag bed/chair. Extra sheets, towels, gauze , wipes. A towel and wipe warmer. And funds for all the little things that come up that are still unknown to her.
Terri devotes every waking moment to Abby and never ever complains. It's is a backbreaking job that she does with more knowledge, love and dedication than I've ever seen.
During this stressful time I don't want her to have to stress over money or the lack thereof.
As a friend you always ask what can I do? This is what I can do.
Appointments have already started and her next trip is January 18th 2017. Surgery will be Feb 22, 2017 with a 3 day hotel stay beforehand.
Any help given will be received with heartfelt gratitude as it will not only make this difficult road easier for Abby, but will also offer some peace of mind to a very dedicated and deserving Mother!
Abbys father works tirelessly as a Maintenance man so Terri can stay home and provide the best care possible for their child.
it is unknown at this time if there will be lost income so he can be with them during the decision making and testing process as well as surgery.
She spent her first two days in ICU and remained unconscious for 32 hours. During that time every time she was moved she would become tachycardic with her heart rate going into the 170s and her O2 stats dropping into the 70s . It was a very scary time for all.
She was released on March 3 and her family drove five hours home. She has been bed ridden for the most part. She cannot at this time sit up on her own. Nor can she take steps unassisted. It became apparent after three times of trying to get her to take steps that the hope that fixing her spine would fix her ball and socket and femur and put them in the back into place did not happen. So unfortunately there will be more surgery in her future. Not something her family can think about or process at this time .
She is still on constant Tylenol and muscle relaxers but they have tried to cut down the narcotic as much as possible . Exercise and PT at this time is very painful for Abby.
Her godmother flew in and spent the last week giving her mother a break and cleaning and organizing their home. Something they will be eternally grateful for.
Her teacher came for a visit last week and the family and teacher pretty much decided that Abby will not return to school until the fall. She will start homebound schooling next week and the teacher and mom agrees that PT should be included in the home .
We are also grateful for your prayers, love and support through all of this and we thank you more than words can express. This is going to be a very long haul for our little princess.