Bye, bye physical therapy (for now)

       Today was our last session of physical therapy.  I say "our" because even though it was Amaya who was there for therapy, Lidie and I also went along too. Lidie was such a trooper. She provided comic relief, distractions and lots of praise and encouragement for her sissy.  I can't believe how quickly that time went by!  We were so fortunate to have two great therapists working with us. Beyond helping Amaya and teaching us new exercises. They also made us feel welcome and helped include Lidie in the therapy. I'm fortunate to have been able to be there with her for each of her sessions.  It's been great seeing Amaya push herself, try new things, and get stronger.  I've learned several exercises and techniques that we will continue to put into practice at home.  And if I forget, I can always call Cassi up (thanks again, for giving me your number!).  We were fortunate to have Tia Amanda come along for our last session. She was able to see first hand what our sessions are like; it's always nice sharing parts of our lives with others.      
      Leaving was a bit bittersweet. It's become such a part of our routine for six weeks now. We will all miss seeing Cassi and Jay on a regular basis.  Although, Amaya did make sure to invite them to her birthday (even though it's about three months away).  The girls really bonded with them.  Amaya wrote cards for each of them, thanking them for their help.  She's very thoughtful, and realizes that they truly are helping her.  After our session we got frozen yogurt to celebrate!

      After frozen yogurt it was time for our follow-up appointment with Dr. Nelson.  By this point Lidie was getting very squirmy. She had missed her nap and I was SO thankful to have Amanda there to help distract her.  This is the first appointment that Josh couldn't be there for, so it was nice having Amanda there to "fill in."  Thank you again Amanda!  After a short wait, a physicians assistant came in and examined Amaya and checked her leg.  She was unfamiliar with Amaya and her condition, so I was having to fill her in on the past few years.  After a few minutes she went and got Dr. Nelson.  As he entered Amaya handed him a card that she wrote for him.  It was short and sweet; she thanked him for "helping me" and let him know that he is "very smart."  He thanked her and said that he would keep it forever.
      He examined her knee and asked how she was doing, how therapy went, etc.  He was quite happy with her recovery.  It still amazes me when he pushes on her knee and it doesn't pop or dislocate. It's pretty amazing!  It's been six months and two days since he performed the superknee procedure on her. Wow.
       He said that from his perspective "biologically and psychologically" she is ready for the lengthening surgery.  "I think she'll do great" He said, which helped calm my nerves.  It's just a matter of when we would like to schedule it.  He's booked up until September so any time after that would work for him.  During the surgery he will do three things; lengthen the left femur, realign the femur (it's a bit "knocked" above the knee) and correct the hip (what he had originally planned to do in January).  He believes that she will only need this surgery to lengthen the leg and correct the femur and hip, but did say that she may need another surgery later on to "stunt" the growth of the normal leg.
     The actual lengthening will take about three to four months (they lengthen one millimeter a day), but the fixator will remain for another six months to stabilize and give support to the leg.  Once the fixator is put in she will have physical therapy for one hour a day Monday thru Friday.  We're not sure how long her hospital stay will be, but he hopes that she'll be able to return to school and be mobile in about four-six weeks.
      So now, Josh and I have some planning to do and decisions to make, because in a few short days Dr.Nelson's nurse will be calling to schedule the surgery.  Once we have the surgery scheduled we'll make an appointment to see him one month prior to the surgery where he'll take x-rays and measurements.
      So today we said goodbye to physical therapy, but only for a short while.

This was taken on our last day, and we are all smiles!

Four centimeters

     At our last physical therapy appointment Cassi (Amaya's physical therapist) decided to measure Amaya's legs to see what the difference between the two legs is. Her right leg measured at 59 & 1/2 cm. And the left one was 55 & 1/2 cm. The difference is four centimeters which is almost two inches. At birth it was closer to one and a half inches, but now it's closer to two. They've calculated that by the time she's done growing it'll be closer to five inches.
     Cassi was concerned that Amaya's lift isn't high enough or helping Amaya. She was concerned that Amaya's gait isn't developing properly, the weight isn't being evenly distributed in her bones (which causes them to not develop properly), her muscles aren't developing properly. She also mentioned that long term problems could develop for Amaya as well (all throughout her body).  She strongly recommended that we add at least a quarter inch to her current lift.
     I had to stop and take it all in. Although it isn't completely new information, it's always a bit shocking. I have to stop and figure out where do we go from here, how will we handle this, and what's the best way to move on with this new information. So we'll take her shoe back in and have half an inch added and see how she does with that.

Some random stuff from Tuesday

      This week at physical therapy Amaya was riding the bike with the added 30lbs. when she lost balance and started to tip over. I reached over to catch her but had to use both hands, because that was one heavy load! Thirty pounds sounds like a lot but it feels like a lot more! I was shocked that she's even able to ride it so well (except for that momentary loss of balance) especially up the small hill. She rides it around the whole facility which is about two small blocks in length on each side.  I was quite impressed with her.
     Ever since her surgery we've had several "guests" call Amaya and speak to her. Yoda, Darth Vader, The Grinch, the Humu humu fish, and Santa, to name a few. My husband is the one who disguises his voice and talks with her, but she buys into it and its quite fun. It was also a great distraction during her surgery and recovery. "Santa" called yesterday to check in. While Amaya talked with him I overheard her say "you know how I have one leg short and one leg long. Well I'm doing physical therapy and then I'm gonna get it longer and I'm brave!"  I couldn't help but smile! I felt proud and happy. She has been so accepting of who she is and how she is, without letting it limit her. As well as brave and courageous. All things that I worried and wondered about as she was younger.
     At the end of our session with Cassi ( Amaya's therapists) she noticed that Amaya's left calf is tighter than the right. She showed us some stretches to do to help loosen the muscle. She also thought that maybe we should get a higher lift on her shoe, because she seems to not be walking on it properly because its not quite level.  Right now she has a one inch lift on there, but her discrepancy between both legs is closer to two inches.  This is something we've struggled with now for almost five years. How long to make the lift? Some orthopedics tell us that it doesn't matter, some say get it as close to the discrepancy. We've had it higher before. It use to be one and a half inches when we first got them (when she was about one), but she would fall a lot as the lift would catch on surfaces. Especially since her knee would give out (dislocate) and also cause her to fall.  Weight is also an issue with a higher lift. The bigger it gets, the heavier it gets. Right now its at about a quarter pound, which is a lot to carry around.  We've tried to cut as much extra wight off by tapering off the front and back and by using canvas shoes. But now it seems that we might have to go back to a one and a half inch lift.  The trouble with not having the lift too short is that the muscles on the back of the leg don't stretch/develop like the ones on the normal leg do.
     It seems like she's gone thru a growth spurt recently, which makes the discrepancy look longer. We haven't had x-rays taken in about a year so we're not exactly sure what the difference is. Her doctors wanted to limit her exposure to radiation as she'll definitely be getting a lot more x-rays during the lengthening process and throughout her life.

Meeting and exceeding goals!

     This past Tuesday we had another physical therapy session. Our regular therapist had to see other patients so we saw a new guy.  He had seen Amaya around but had never worked with her directly. Before he began the therapy session he looked over her chart to see what she's been working on and what her goals are.  When Amaya first had her physical therapy evaluation back in February they set several goals for her.  One was to have a range of motion in her knee up to 130 degrees. He said "well, let's just see how close we are." He checked her knee and not only did she make it to 130 degrees but she passed it!  She was able to get to 150 degrees with no problem at all!  I was happy, and so was she. I remember where she was two months ago and where she is now.  He was happy and excited and decided to push her some more during the session.  Lately she's been riding a bike with 20lbs. strapped on it. Not only does she ride it, but she goes up two small hills as well. Well this time he decided to see if she could do it with 30 lbs strapped on, and she did!
    She is resilient, and determined! Without complaint, she does what's asked of her.  Not only did she go up the hills with the extra weight, but she also rode around the entire facility (about a block or so). She also pulled Lidie ( who weighs about 40 lbs.) on her belly board. This one she does with both legs forward and backward. First she does it with both legs and then with just the left leg.  Later he took her into the "machines" and had her work on leg lifts, when she had no problem doing some of the stuff, he would add weights to her legs.  And still she didn't complain or give up.  She told him that she'd like to be a physical therapist when she grows up, which made his day.
     Watching her run, and maneuver around, and do the exercises is wonderful. I smile as I watch her, because I remember all those times when she would fall after her knee would give out. And I remember how much pain she was in after her surgery and during her first therapy sessions. I remember her pain and am relieved that it has passed. She still has some goals to reach; build strength in her ankle, knee, and leg muscles. But I am confident that she will reach them!

Glee

     During this process we've tried to find things that distract, entertain and show Amaya that she's not alone.  We found pictures of other children with PFFD online, we bought a photo book (created by a mother who also struggled in finding photos of children with PFFD to show her child), and as we saw people in the media using braces or wheelchairs we made sure to point them out to Amaya. This was obviously not an easy task. We did see that Troy from High School Musical wore a knee brace as did his teammate Jason.  When Amaya wore her knee braces she thought it was very cool that they also sported one.
     When we began to prepare Amaya for her super hip, super knee procedure we were able to find pictures online of other children in a spica cast, and in wheelchairs. Although she ended up not having the spica cast, only a leg cast and a wheelchair.
     This is where Glee comes in. One of the nice things about Glee, among many, is that they have main characters who are "different," for lack of a better word, from what society considers normal and beautiful.  Artie was someone who Amaya could relate to, and in some ways look up to.  Not only was he in a wheelchair like she would be for six weeks, but he also sang, had friends, danced and enjoyed life.  He made being in a wheel chair not just normal, but cool as well.  Each week we would sit and watch the show (this usually means me fast forwarding the "adult parts" and enjoying the music with her).  We looked forward to the music and to see what Arite would be doing.  When she was in her wheelchair she got gloves like he has, would wear her clip-on black tie and would maneuver around the house in her wheelchair like him.
     A few weeks ago when the "Born this Way" episode aired we sat to watch it, just like all other weeks.  I had never really payed much attention to the lyrics of that song, but during that moment as I sat there and rubbed her leg I couldn't help tear up and become emotional.  Rubbing her leg with PFFD, enjoying an uninterrupted cuddle and listening to the cast of Glee sing "there's nothing wrong with  loving who you are...I'm beautiful in my way 'cause God makes no mistakes...don't hide yourself in regret... Just love yourself."  It was quite emotional, on many levels.  I couldn't help but feel proud of Amaya. She has a level of understanding beyond her five and a half years. She has an acceptance and love for herself, just as she is. Which she transfers to those around her.  This is something that adults still struggle with, but here she is, with a sense of reality, optimism and love.  I have much to learn from her.  She's amazing!

Physical Therapy

     This past Wednesday Amaya had her first physical therapy session and did great.  In February she went in for her physical therapy evaluation, where the therapist wrote up a treatment plan for her. I was so glad that she didn't complain of any pain or discomfort, neither that day, later that night or the following day.  She had an hour long session and was able to keep focus and do all that was asked of her.  I'm so proud of the strength that she has shown throughout this entire process.
    It took eight weeks of waiting for her referral to get the proper signatures, get approved and in place.  But, alas everything is is place and she is all set.  This has been quite a lesson in patience for me. To be quite honest, she is doing wonderfully.  Especially considering she had surgery four months ago (has it really been that long?!) and is only five and a half years old (although that seems to be working to her advantage). She has recovered quite well from her surgery and is able to move about and do pretty much everything she tries. But for me it isn't a black or white issue, is she good or not good. But, rather an issue of how can physical therapy help her; to fine tune her walking, running, to build strength, to learn how to use her "new" knee, etc..
     She will continue her therapy for the next six weeks.  She will have hour long sessions on Tuesdays and Thursdays.  I'm excited for her to begin this next stage in her recovery and see how much she will accomplish in that time.
    A neat thing that happened last week was that while we were visiting Amaya's primary doctor's office we met Marylou, the referral coordinator for the Beaver Clinic. She has helped us so much.  We have been working with her for over a year now.  She is the one (at times it seems like the only one) who gets things done for us.  She ensures that all the paperwork is in place in a timely manner so that Amaya can get all the services she needs.  In one word; she is amazing.  I was so glad to finally meet her and thank her in person for all the help she has given to us.  It was neat to see her so excited to meet us as well. Amaya showed her, her scars and talked to her about her surgery, and her knee.  After a long hug I walked away with a big smile on my face.  I'm so grateful for the help, love and support we've  have received.

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!