amaya at lake

amaya at lake

Monday, March 28, 2011

Waiting, waiting and still waiting

     Well it's Monday and that means it's my day to call the physical therapy office (to see if Amaya can get an appointment to get in to start her physical therapy).  I've been calling once or twice a week now for four weeks.  At this point it's been a lot of waiting, calling, being transferred, calling back and waiting some more.  It is an extremely frustrating process.  It's especially difficult because I feel as though I am powerless to actually do anything.  All my calls and questions, and messages seem to go unnoticed.  I know that isn't entirely true, but the process does tear one down.  I have been able to track the progress of the evaluation and make sure it is going thru the proper channels as quick as possible.  But, even with all my efforts and the progress made, we still do not have a clearance to schedule her therapy.  It's been over thirty days since she was last seen for her physical therapy evaluation,  and almost two months since her cast was removed.
    My advice to any parent having to go thru this; don't give up.  Although it is nothing short of frustrating (I've been pushed to tears many times during this process).  I know that my efforts are all for the benefit of my daughter, and she is definitely worth the time, effort, energy, and follow thru.  Another bit of advice; make friends among the staff along the way.  It's a hard balance; trying to keep on top of it while not becoming too pushy.  Trust me people are much more willing to help you when you are kind (for the most part).
      I realize that I now have a role to play as Amaya's medical advocate, so that is what I will do.  Advocate on her behalf.
Wish me luck and patience!

Thursday, March 3, 2011

Second follow-up with Amaya's surgeon

     Today we had our second follow-up appointment with Dr. Nelson.  It was nice to see how happy he and the assisting surgeon were with the results of Amaya's surgery.  He said the incisions had healed well and the knee now has the same function as the right one does. This is amazing!  Her knee no longer dislocates, or buckles.  This use to cause her to fall quite often.  
     He wants to see her in six weeks to follow up with her progress and then again in six months to plan for the next surgery.  By her next appointment she should be done with her physical therapy.  Physical therapy will be three times a week for a month.  He was quite happy with how much movement and mobility she had in her knee.  Physical therapy will help strengthen her muscles and increase her ability to bend and straighten her knee.
     He thinks that the next surgery (when he lengthens the femur and releases the muscles in her hip) will happen in about a year or so.  They don't typically perform that surgery between the ages of four and six, because cognitively it is a lot for a child that age to handle.  And since their is a lot of physical therapy (usually two hours a day), time (about nine months for the lengthening process) and work involved with the next surgery he said he might wait until she is six and a half or seven.  He's hoping he can get all of the lengthening done in one surgery, but there is a limit to how much lengthening they do in one surgery.  It's usually about three inches, and Amaya will need about four to five.
     While waiting for Dr. Nelson, the assistant surgeon was talking with us and admitted to not knowing what to expect at this point in her recovery, because only a few surgeons know how to perform the super knee procedure.  We are very fortunate to have Dr. Nelson so close to us and to have such good insurance that allows us to see him for treatment.
     Again, thank you to friends and family for your continued support along this journey, that Josh and I sum up with one word, intense.

Wednesday, March 2, 2011

Physical Therapy

     Well we finally had our first session of physical therapy last week. It took two weeks to process the insurance referral and then another to get an appointment.  I was getting a bit impatient and uneasy, but was happy to find several kind people along the way who were willing to help speed the process along.  It's always great to be met by kindness when facing obstacles.  I was also worried (although I tried not to) if Amaya was doing too much or not enough or doing something wrong with her leg.  We just kept telling her to listen to her body, if it felt like something was too much, then not too push it.  But also trying to balance that with a healthy dose of encouragement and motivation to try things.  Each day Amaya gets tired and worn out, when she gets home she rests for about an hour or so while Lidie naps and is asleep by eight (although usually its seven-thirty).  She often requires tylenol or advil for the pain. A warm compress seems to help relieve the pain as well. Throughout all of this she has shown such resilience, a high tolerance for pain, strength, courage, feistiness (the good kind), and a willingness to try.
      Our physical therapist, Summer, was wonderful.  Her warm, welcoming spirit and friendliness won Amaya over instantly.  Summer was very impressed with how quickly Amaya got up out of her wheelchair (about two days after the cast came off) and how quick she stopped using it (about a week after the cast came off).  She was very happy with how much Amaya was able to do (how much she was able to bend, and straighten her leg, her muscle strength throughout the leg, as well as her willingness to do whatever Summer asked of her without complaining or whining).  Amaya was able to do a full hour of therapy, which was quite impressive.  Summer recommended four exercises to start with, this should keep us busy until we can see her again. We have to wait, again, for Amaya's orthopedic surgeon to approve the physical therapy plan that Summer wrote up for Amaya and then it will go to insurance for approval as well.  Summer was happy to see how much Amaya was able to do considering not only her disability, but the fact that she's recovering from surgery and learning to use her knee and leg in a whole new way.

      Summer recognized me, from when I use to bring Lidie there for her physical therapy (about a year ago). It was a great reminder of how much Lidie has accomplished and overcome. Both my girls are amazing.