October 13, 2011

Reality setting in

     Although we've had Amaya's surgery set for quite some time now, it still feels a bit unreal. Perhaps because when we set it, it was so far away. In June we scheduled her next surgery; the lengthening procedure. October was the first date available, it would have been her first off-track session, and "good timing." But something about it felt too rushed. Just thinking of it made us anxious and nervous. And that's not how we wanted to feel heading into such a big procedure. Especially one that would take so long (ten months). Since there was no rush to do the procedure we decided to schedule it for next March, during her next off-track session. At the time it was ten months away and felt so far. The distance of it, was comforting and made it seem somewhat more bearable. Ten months seemed like a good enough time to transition and prepare for it. This would give Amaya enough time to adjust to her new school, and all of us time to adjust to new schedules and routines.
     Last week we received a referral from Amaya's primary doctor to set up a follow-up appointment with Dr. Nelson (Amaya's orthopedic surgeon at Loma Linda Children's hospital) and get x-rays taken. I must admit that while I was opening the letter I felt some tension rise up inside of me, maybe it's just a reflex now. I instantly remembered all those early x-rays that were so traumatic for Amaya and us. Where she would scream, cry and wiggle around. Her doctor at the time would end up taping her down to the table while three of us tried to hold her down. All the while she would cry out and beg "please, mom, please, help me. Please, stop." Oh it was awful, just awful. Seeing that referral reminded me of those painful early appointments we endured.  My eyes teared up at those early memories.
     It took me a few hours to call in and schedule the appointments. Which of course took three days to get scheduled (for referrals to be sent to the correct offices, etc.). We'll be seeing Dr. Nelson on November 17. At this time he'll have some x-rays taken and he'll get all the measurements he needs to plan and prepare for the lengthening surgery. He'll also be able to get a good look at Amaya's hip and decide what to do to correct it. These are the first x-rays she's had in a couple of years, so I'm curious to see what her hip looks like now.  We've never gotten a good assessment of what needs to be corrected in her hip. If you remember she was suppose to have the super hip and super knee surgery done in January, but Dr. Nelson decided the night before that she only needed the super knee. He did say that he would correct the hip when he did her lengthening surgery.  We're not sure what exactly she needs done to the hip or how he plans to correct it.
     So, I'm excited to get some answers, but feeling some anxiety and nervousness because of how quickly time is passing. We're down to five months left, which may seem like a lot of time, but I know it will pass quickly too. I am so glad that we decided to wait until March and didn't try to do it in October (it would have been in two weeks, on the 25th).  This extra time has proved to be quite helpful to prepare Amaya. She's had lots of questions, concerns and fears. And even though we've made a lot of progress in preparing her she still has so many unanswered questions, like we do. She asked her Dad last week if she we would have "a robot leg" and asked me if her fixator would come off like her brace did.  She still doesn't quite understand everything, which is normal. Some of the adults in her life still don't understand it either. That's why I'm so thankful for these next five months, where we can continue to reassure her, comfort her, show her other kids pictures and blogs and answer her questions.
     I'll make sure to post after we meet with Dr. Nelson in November. Until then keep sending calm thoughts our way; we continue to need them.

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