amaya at lake

amaya at lake

Tuesday, June 28, 2011

Dictated by Amaya

"I was scared, but not anymore. About getting the other surgery and taking the medicine too. The medicine I had to take last time that helped me and the IV too. And I like that the doctor helped me and I really like that my mom made a blog for me."

A conversation between sisters

     I overheard the girls talking this morning. Lidie sat next to Amaya as she was going potty and asked her, "you got owwies Amaya? Are you okay?" Amaya responded, "yes Lidie. I have one short leg, and one long leg. And I didn't have any ligaments in my knee, so my doctor put some in. That's why I have that scar, that's where he put it in. Do you wanna touch it? And guess what Lidie, I'm gonna have another surgery, and I'm gonna have a robot leg and then people can sign my cast. And I'm gonna ask my doctor if I can see my x-rays and keep the robot parts when he's done. It's gonna be cool!" To which Lidie responds, "I'm gonna have surgery too!"
     I was so glad that I was able to overhear such a conversation. Something about how calm Amaya is when she explains her condition and her treatment that always makes me smile. And it's so sweet how kind and compassionate she is for the other person. She told Lidie, "it's okay sweetie, I'll be fine, don't worry, it doesn't hurt me, I'm okay." She always tries to comfort and console others. I'm always amazed by her understanding and compassion. Times like these reassure me of her ability to handle all the challenges that will come her way. And if she can do it, so can we.

Here are a couple pictures of the girls.

Sunday, June 26, 2011

Interview with Dr. Paley

     I just added a link under the link section titled "interview with Dr. Paley." I found it on another blog that I follow, Daniel's Steps.  The link goes to an interview conducted with Dr. Paley last February.  Dr. Paley is an orthopedic surgeon who has pioneered many treatments for PFFD including the super knee procedure that Amaya had done this January.  He does most of the lengthening surgeries in the country. Many people travel from other states and other countries to seek his opinion and treatment. He's located in West Palm Beach, Florida.
     The interview focuses on the lengthening procedure and gives lots of information about the process (which we will be doing next spring with Amaya). If you get the chance I highly recommend reading it, especially if you or your child have PFFD.

Dolphin Tale

    We went to see Cars 2 on opening day and saw a preview for the movie Dolphin Tale. It's based on the true story of Winter, a dolphin who lost her tail when she was three months old. Winter got separated from her family when she got entangled in a crab trap. She lost her tail and was adopted by her "forever family" then had a prosthetic tail made for her. I was immediately excited to see the movie, I'm a sucker for movies based on a true story or loosely based. Either way I enjoy them. But this one really got to me.  As I watched the preview I got teary eyed. I thought of all the children who've had to wear prosthetics and the journey they have gone on.
     I thought of my Amaya and her journey. I remembered all the things she's worn throughout the years to help her. Countless shoe lifts, a Pavlik harness at two weeks old, a neoprene knee brace, a custom made ACL knee brace. Not to mention her surgery, the cast and wheelchair that helped her recover as well as the hours of physical therapy.  Her journey is like many before her.  I wasn't so much sad as I was grateful for all the help that she's gotten along the way. And grateful that although her disability is a real one, it is something she can handle.

    Here's some photos of Amaya and her lifts, braces, cast, and wheelchair.

Monday, June 20, 2011

March 6th

     Well we set Amaya's surgery date, for you guessed it, March 6, 2012.  When Dr. Nelson's nurse called last Wednesday to schedule Amaya's surgery my heart tightened.  I feel like the past six months have flown by and we've been in survival mode. The thought of two surgeries within a ten month time frame seems so rushed and hectic.  Josh and I had been discussing it with Amaya and trying to decide when is the best time to have it scheduled.  Her surgeon said that there was no benefit to doing it now or waiting until spring. He said to plan for the "best" time for us since it will be so time consuming (weekly and bi-weekly follow-up appointments, daily physical therapy). Our first thought was to do it in October when Amaya goes off track for the first time.  Then we thought about March, during her second off track session.  Although both times had some pros and cons (weather, giving her time to adjust to her new school, new routines, the thought of the new surgery, giving us all time to recover, etc.) we decided to go ahead and wait until March.  This will allow her time to adjust to her new school, participate in the Nutcracker ballet, and enjoy part of her first year of school.
     This has been such a tough decision for us. Part of me wishes that we didn't have a say in it, that her doctor would say this is the day were doing it, then we would just deal with it. But having to decide to schedule a surgery for your child (it would be so much easier if it were one of us having the surgery) is not easy. Is there really a "good" time? How about never?  Although I know that Amaya will benefit from the surgery, I do not want her to suffer. How do you answer her when she asks, "Mom, will it hurt?" The answer is yes, it will hurt, it will be uncomfortable, it will be frustrating, and time consuming and challenging for you and us, but you will do it and do excellent.  It's hard trying to explain all of this to a five year old.
     The best we can do is prepare ourselves and her. We've begun to show her pictures of other kids in their fixators, of them at physical therapy, and after surgery.  We remind her that we love her and will help her thru the whole process and that she's not in this alone.  Which she always responds with a sincere "thank you, Mom."  I know that she will do fine, but my heart just wants to protect her from any pain. That's one of the hardest parts of motherhood, not being able to keep your child from pain.
   But this morning as I called Dr.Nelson's nurse to schedule the surgery I was calm and at ease. I know it will all work out.  Amaya will do great. She will be better because of the surgery.
    The date may change though, since he hasn't scheduled his vacation times that far in advance yet. We're in the books for that date, but may need to adjust it to accommodate his vacation. His nurse says that he usually takes a three week mission trip in the spring, and she didn't have those dates yet.   But, we will just deal with it when the time comes.

Thursday, June 9, 2011

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!

Monday, June 6, 2011

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.

Wednesday, June 1, 2011

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.