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Jan 23, 2016 Latest post:
May 26, 2016
Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most. Please click the notifications button next to Abby's name if you would like to be notified via email or text when an update is posted.
Thank you everyone for all your love and support. My cousin Jill recommended we leverage this site to keep everyone updated. I had no idea that this type of site existed and thought it was a great idea. Everyone has the opportunity to setup notifications on how they would like to be notified. This will allow Jim and I to post an update in one location and notify all those that sign up. Please do not hesitate to forward the link to anyone that you think would like to receive updates.
Abby's story began two years ago while playing soccer. Abby started to experience severe pain and her pediatrician sent us to the ER. During her ER visit the physician found a break in Abby's spine. Immediately following the visit we met with Dr. Shah an orthopedic surgeon at Nemours AI Dupont Hospital. Dr. Shah diagnosed Abby with Spondylilysis at L5 Grade 2. Abby's spine was at a 50 degree shift into her body. Abby was also diagnosed with Spondylitisthesis at L5 and S1. Dr. Shah provided Abby a brace, limited her activity for 6 months and recommended 6 months of physical therapy. Abby returned to Dr. Shah after six months for additional x-rays. Abby was able to resume all activity and was advised to only wear the brace for pain as needed. Abby was happy to be back doing the things she loved!!
Abby has been seeing Dr. Shah every six months for x-rays and a consult to monitor the movement of her spine since her diagnosis. In November, 2015, Dr. Shah informed us that Abby’s spine had moved again and she needed surgery. Abby's spine went from a Grade 2 to a Grade 3 shift (50% to 75%). We went to Children's Hospital of Philadelphia (CHOP) for a second opinion. CHOP agreed with Dr. Shah's assessment. Dr. Cahill at CHOP did suggest doing the surgery sooner than later. Dr. Cahill indicated that the spine is shifting so fast and was concerned with nerve damage occurring. Abby is fortunate. At this point, Abby should be doubled over in pain and have no control of her bowels and bladder. Abby is showing no symptoms and both Dr. Cahill and Dr. Shah are amazed.
We have elected to have Abby's surgery at Nemours AI DuPont. Abby is comfortable with Dr. Shah. He is highly respected and highly credentialed. Both CHOP and DuPont indicated that they only see 2-3 children a year with Abby's diagnosis. The majority of children and adults that have this diagnosis are diagnosed and their spine never moves. Abby's has moved rapidly over the last two years.
Abby’s surgery is scheduled for February 10, 2016.
Spondylilysis at L5 Grade 3 (Abby started at a Grade 2 – her spine has now shifted 75% into her body)
Spondylitisthesis at L5 and S1
- PosteriorSpine Fusion
- InterbodySpine Fusion
- Procedure is approximately 6 hours – We had family counseling on Monday and Dr. Shah is going to attempt to move her spine to eliminate some of the shift and put in multiple screws and rods.
**Abby will see the surgeon once a week for 8 weeks following the surgery. Abby will be out of school for 6-8 weeks and will take 6 months to fully recover.
Abby is handling it well emotionally, but has met with the school counselor a few times to help her through this waiting period. The mental state of a child that is active and involved is a concern of the surgeon and something that should be monitored.
Abby’s school has been amazing. They will be sending teachers to the house while she is out. She is lucky her homeroom teacher and math teacher volunteered to be her tutors.
Abby can return to school after 6-8 weeks, but cannot participate in any activities (recess/gym). During this time Abby’s principal has encouraged her to come up with a list of things to keep her busy. This way she will not have to sit and watch everyone running and having fun. Abby has elected to do a community service project. Which is amazing!! I am working with Bethel Springs (Abby’s school) Helping Hands Club to come up with a project.
We are proud of Abby and how she is handling it!! Jim and I know the risks, but know she is in good hands at DuPont.