Sloane made her big debut into the world, at 39 weeks, on June 24 2010. Despite having what I thought was a relatively “normal pregnancy,” Sloane was born with a severe lack of oxygen from being both severely choked by her umbilical cord twice around her neck as well as (learning when she was 8 months old) that she suffered an in utero stroke that severely damaged the parietal and temporal lobes of her brain. Due to this, Sloane was diagnosed early on, as having Spastic Hemiplegic Cerebral Palsy. Fortunately enough, we have been able to get her all of her necessary therapies such as Occupational, Physical and Speech Therapies, as well as her seeing many regular specialists along the way. Sloane is now 11, in 6th grade General Education classes, including AP English Language Arts and Choir as an extra curricular in school. She is doing well in school, in the books. However, she isn’t able to do the things her friends do. She “can’t” skip, hop, jog, jump rope or even walk for more than a couple of minutes without exhausting and needing a break or shutting down. She wants so much and as parents, we want so badly to just be able to make it possible.

 

Sloane began getting medical BOTOX and serial casting for her spasticity every 4-6 months in July 2011, at a young age of 14 months. Unfortunately , these injections are no longer helping in the relief of her muscle spasticity and her pain has increased, causing sleepless nights and more frequent fatigue. She takes muscle relaxers twice a day in hopes of taking the edge off of the pain and muscle cramps that the spasticity causes.

 

Over President’s Day weekend, Sloane and I took a road trip to St. Louis Children’s Hospital where we met with the wonderful Dr. T. S. Park, Neurosurgeon on February 21, 2022. He reviewed her MRI, hip and back X-rays, her physical therapy report, as well as did his own assessment and determined she is a perfect candidate for his Selective Dorsal Rhizotomy spinal operation that will undoubtedly and dramatically improve her quality of life.

While we know there is no cure for Cerebral Palsy, there are treatments that can improve Sloane’s quality of life. We have researched (SDR) Selective Dorsal Rhizotomy for over two years and finally got the call that, not only is she a great candidate for the surgery at the St. Louis Children's Hospital in St. Louis, but she is able to have the procedure as soon as May 27, 2022! SDR is performed by Dr. Park who has done over 4,000 SDR surgeries to date. The surgery corrects muscle spasticity by cutting the nerve rootlets in the spinal cord that are sending abnormal signals to the muscles. Dr. Park believes that with the SDR, Tendon Lengthening and intensive therapies, her future will be dramatically improved beyond what we could have ever foreseen.

 

This is a huge commitment for our whole family, but one we are absolutely ready and excited to do. Sloane will be admitted for surgery and on bed rest for 3-5 days. She will then receive intense, inpatient therapies for, again, approximately 4-5 days. At that time, we will come back home to Texas where she will undergo intense Physical Therapy 4-5 days a week for 6 months, 3-4 days a week for 12 months, then continue PT 2-3 times a week for up to 3 years. We will have to go back to St. Louis for a surgery follow up at the 4 month mark as well as 12 months.

 

Additionally, Sloane will have a Heel Cord Lengthening procedure with the Pediatric Orthopedic Surgeon that works with Dr. Park in St. Louis between 4-6 months after her SDR Procedure. Due to Sloane’s Cerebral Palsy and lifelong spasticity, her muscles and body have grown differently. In conjunction with SDR, this procedure will increase her range of motion ever more, allowing her to put her heel to the floor when walking or even standing, which is something she has yet to ever do without, grimacing or intensifying pain.

 

At this time we have the opportunity to have the surgery done this year… but with the cost of the two surgeries and the intensive therapies, as well as flights and hotels, we are asking for all the help we can get. We are extremely grateful and appreciative for any help to make Sloane’s dream of becoming an even more independent tween come true. Please share and spread the word! 

 

Thank you all and God Bless !

Sunny

 

About SDR:

https://www.stlouischildrens.org/conditions-treatments/center-for-cerebral-palsy-spasticity/about-selective-dorsal-rhizotomy

 

About Tendon Lengthening:

https://www.stlouischildrens.org/conditions-treatments/center-for-cerebral-palsy-spasticity/tendon-lengthening-following-sdr