Skyla Lynn Blanchard was born February 22, 2004 in Lake Charles, La.
Skyla was born with Spina Bifida, scoliosis, missing a rib, only one kidney and a little club foot. For some babies that may have been a problem but not for Sky she never knew any different.
When Sky began to crawl she would drag little foot behind but it never seemed to slow her down, one leg and two hands was all she needed.
When it was time to walk she managed to walk on the side of little foot because it was turned in and was unable to straighten it out like a normal leg. Because little foot was so small and turned on its side it was much shorter and created a hobble that she managed to perfect in order to get where she needed to go, nothing seemed to slow her down.
When Sky was two the whole ankle and side of little foot became a big bruise and blood blister from walking on the hard floors with no shoe since there was no way to keep a shoe on little foot, that kind of stuff was in the way and tended to try and slow Sky down.
When the doctor was asked what could be done to protect little foot from the bruising and the pain the doctor replied there is no pain, she has no feeling, no motor skills and very little circulation to the foot. He warned at some time the foot and/or leg may need to be removed to get it out of her way and possibly replace with a prosthetic. When asked about other options, there are no options for the leg and foot as long as the spinal cord remains tethered, the conditions will get worse not better and she is too small and young to attempt spinal cord surgery.
When Sky turned three Shriners Hospital in Chicago performed spinal cord surgery to attempt to untether the spinal cord to increase circulation, establish some motor skills and maybe some feeling in the leg and foot in order to keep from removing little foot. Only time would tell if it would be successful and to what degree of success would determine the amount of use for little foot.
After her fifth birthday Shriners Hospital in Tampa, Florida determined that even though only limited feeling, circulation and use of the leg was accomplished from the spinal cord surgery, it was enough to attempt to reconstruct little foot with a “transfer” surgery to straighten the foot and transfer the tendons form the short side to the long side and the tendons form the long side to the short side of little foot and cut the achilles tendon three times so little foot could straighten out for the first time. The doctor told us the surgery went well and with rehab Sky should be able to walk without a cane or walker as long as she would wear her ankle brace and work hard at rehab to strengthen and train little foot to work. Little foot would always be 2-3 shoe sizes smaller and her leg 3-4mm shorter but with inserts in her shoe and her ankle brace she should be able to walk with only a slight limp.
After several years of playing recreation league softball and volley ball Sky began to develop pain in her hip and leg. At an appointment with her orthopedic doctor Sky told doc that after her softball games her little leg would cramp and hurt and sometimes she would fall down because little leg wouldn’t work and her hip was beginning to hurt also.
Doc: Softball, you play softball?
Sky: Yes sir, I play third base, first base, I pitch and I am the clean-up batter.
Doc: Sky how do you play, you don’t run do you?
Sky: Yes sir, I have stolen bases and I can score runs.
Doc: Sky, go in the hall and show me how you run.
Doc: Sky, little leg doesn’t run you are swinging it with your hip, you are “willing” your leg to run”.
Sky: That is the only way I know how, it is the only way I can get little leg to run.
Doc: Wow I didn’t know you were playing sports.
Sky: You didn’t tell me I couldn’t.
Doc: The problem with your hip is little leg is now more than 4mm shorter than your big leg and the way you run it puts too much pressure on your hip and if we don’t correct it you could permanently damage your hip. We can either break little leg and stretch it over many months to make it keep up with big leg’s growth or we can put stainless steel screws in the growth plate of your big leg to stop it from growing to give little leg a chance to catch up.
Sky: I don’t want to miss softball, which way will get me back to playing faster?
Doc: If we do the screws you can go back to playing in a few weeks but you will feel the screws and they will rub when you run and cause pain, also we will have to leave them in until we are sure you want grow anymore.
Sky: I don’t want to miss softball, let’s do the screws!
So another year of softball and volleyball and now big leg is popping and hurting all the time. Back to see Doc her orthopedic doctor.
Doc: Rock Star (Doc’s new name for Sky) all your running and jumping you have worked the screws loose and they are backing out and rubbing on the tendons in the knee causing the pain and swelling.
Another surgery to replace the screws in big leg!
After another year of Travel Softball and the starting “Setter” for her middle school volley ball team the screws are holding and the pain in big leg is gone but now the pain in little leg is getting worse and now little foot goes to sleep and she can’t feel it anymore.
Another trip back to the orthopedic doctor.
Sky: Doc, why is little leg hurting all the time and going to sleep.
Doc: Rock Star (Sky), everywhere I touch you it hurts, little leg is half the size of your other leg and has to work twice as hard to keep up. The muscles swell so much from fatigue they cut off the circulation to your foot and it goes to sleep. Sky, you are the only “Transfer” patient I have had that plays sports at your level, most “Transfer” patience are glad they can walk with only a slight limp.”
Sky: Oh good I am glad it’s my leg I thought it was my back causing little foot to go to sleep.
Doc: Are you having problems with your back?
Sky: Yes sir it is starting to hurt all the time and now it clicks when I move.
Doc: We need to schedule a MRI and check to see if the spinal cord is tethering again.
Sky’s diagnosis: little leg is worn out and will need reconstructive surgery to strengthen it and the MRI shows signs of re-tethering and will require another back surgery at some point.
Sky: Let’s do it now so I will be ready for softball this spring!
Sky has an appointment in Philadelphia in November of 2017 with a specialist to schedule her back surgery.
To Be Continued....!
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