We had our appointment with an orthopedic surgeon a few weeks ago regarding Kylee’s foot/leg. We LOVED Dr. Mayfield at Cook Children’s and found out he works closely with Dr. Acosta, the neurologist who will be administering Kylee & Brody’s next rounds of Botox in May. He said her tibial torsion wasn’t as bad as we were told initially so that is good news. He also said while Kylee’s brace is probably helping more than hindering, he doesn’t think it alone will have much of an effect on her foot positioning. Our plan for now is to follow up with Dr. Mayfield within 2 weeks of the Botox injections so he can see how the specific muscles reacted to the treatment. It is that appointment that he thinks will confirm what he already predicts will help Kylee the most, which is a surgery called the SPLATT Procedure. The surgery would be transferring half of the tendon from one side of the lower leg/foot around to the other side in hopes that the extra tension will help correct her foot position. Bret and I asked a lot of questions at the appointment and have done a bit of research since then but are not hanging on every word just yet until we see how this next round of Botox goes. Their Botox in the past has not shown us a HUGE improvement. After examining Kylee’s condition, Dr. Mayfield (who also knows our previous neurologist) told us that Dr. Acosta spent a significant amount of time targeting this specific area where Kylee needs the most help. In his words “If anyone can hit the right spot with a Botox treatment, it’s Dr. Acosta”. We feel very confident in his ability and the ability for the two doctors to work together as a team to figure out the best treatment for Kylee.
Over the course of their little 5 years of life, our crew has seen a countless numbers of doctors for many different reasons. Adding a new one doesn’t even phase them these days. Kylee was so comfortable with Dr. Mayfield! She did a lot of the talking during the appointment, told him all about her leg and how it affects her, her therapies…etc. At one point (when trying to reference her hand splint she used during restraint therapy a long time ago) she said “…there’s this thing, in my panty dwawer (drawer)…” Everyone in the room did all they could not to laugh out loud but Dr. Mayfield managed to hold it together, smile back at her and say “In your panty drawer, huh?!” It makes us so proud to see her so confident and be able to talk to people to openly about the things she struggles with!
For now, Kylee wears her brace only a fraction of the time. She complains that it hurts and by the looks of the way it fits, it’s no surprise that it would hurt. She tolerates it for an hour or so before wanting to take it off. We’ve taken her twice now to have it adjusted but the orthotics consultants feel they’ve done all they can to make it fit her leg/foot. It’s a bit frustrating as a parent, but we’re doing what we can do while trying to keep Kylee in good spirits. The last thing we want her to feel is “different” in a bad way, ashamed or overly worried about the way her Cerebral Palsy affects her.
We would appreciate if you threw up a prayer for us every so often that we continue to place our kids in the right doctor’s care and that over time we have the right guidance regarding their treatments. Thanks!