amaya at lake

amaya at lake

Wednesday, May 30, 2012

Eightieth day of turns

     Today marks our eightieth day of turning the rod on Amaya's fixator. Had we been able to do four turns a day we would have 8 cm today (one mm a day for eighty days is 80 mm, or 8 cm). Since we had to drop down to three turns a day for a couple of weeks we'll be done on Monday instead. I'm so glad that Amaya was able to maintain four turns a day for as long as she did, otherwise we'd be looking at another few weeks of turns instead if just four days.
     Today we had an hour break before therapy. We went in to try to schedule Amaya's next therapy appointments, but the authorization hasn't been processed yet. It's a bit frustrating trying to get all of the paperwork taken care of, and tracking it down. I spent a few minutes there, then on the phone, but was still unable to schedule her next appointments. Hopefully things get taken care of soon (we only have a week left of therapy scheduled, and she can't afford to miss any days). After that we still had a few minutes to play at the playground before her appointment. On our way there Lidie threw a fit, and had to take two time outs. Man, talk about frustrating! Between her fits and trying to get the appointments taken care off I was getting very upset. 
     At the playground a little girl (about three or four years old) kept starring at Amaya and asking her mom, "What does that girl have on her leg?" Her mom said, nothing. The girl asked several times, and each time the mom said nothing. It was a bit awkward. Amaya was very close to the girl (could see her starring and hear her asking her mom). Amaya just kept smiling at the girl. I smiled, but just didn't have the energy to strike up a conversation. The girls played for almost thirty minutes and had lots of fun. At one point I noticed amaya's left leg; it looked so straight and stretched. Tight. I could see her veins and tendons thru her skin. It was a bit sad. I can't describe why it made me feel sad, it just did. But, then as she played and laughed, I just had to smile. I must sound like a wreck, or a bit crazy. 
Here's video of Amaya on the slide today. You can see just how straight her leg is when she walks. We call it her "pirate walk." It's very difficult for her to bend her leg when she's standing or walking. But, she had lots of fun playing with Lidie.
     In addition to the slide, she also used the swings (for the first time with her fixator). She tried to pump her legs to swing, but it didn't work. It was funny watching her try to figure it out. She also played on the mango swing and bongo swings. She did a lot of walking too. It's like a workout before her therapy. 
When we got inside Amaya found the comment/suggestion cards. She asked of she could write one for Kim and Melissa. I thought that was pretty sweet. She wrote that they were "nice, helped her, that Melissa helps move her foot, that they help her bend her leg so it can get back in the 100's."  Kim and Melissa both appreciated Amaya's notes, they were pretty cute. 
    At therapy Kim put some weights on Amaya's leg to help it bend. First they put 1.5 lbs. but that didn't seem to do much, so they kept adding weights, until she had 5 lbs. on there. You can see just how far it bent her leg down. Its a nice gentle stretch that was very effective. Melissa suggested that we get some weights so that she can use them at home when she sits and when she props her leg up against the wall. Melissa suggested doing it for about thirty minutes and building up to an hour. She said that we need to make sure its not too long, because then her muscle will tighten up and work against us. With the weights on Kim massaged Amaya's knee.
Next Amaya walked over the blocks. She had to fight to not have a "pirate walk" but bend her leg instead. When she did one without a bend she had to redo it.
     Then she went into the other gym to practice sitting and standing. They set a goal of sixteen bends today. When she did it right (with her leg straight, and her bottom down all the way) she was able to get a 41 degree bend in the knee. Which is when the tears started. It's a stretch and you can see in Amaya's face just how tough it is. In case your wondering that's Melissa laying on the ground so that she could get a good measurement of the knee.
     When we started knee bends and measurements Melissa said that we should shoot for 90, but that 86 would be the minimum goal for today. Amaya agreed then started working. Her knee measured at 40, then quickly went up to 50, 60, 70, then 78. Through grunts, groans, tears and pulls and pushes she got to 90! Ninety, can you believe it?! I was impressed, surprised and relieved. It only took her fifteen minutes to get there, which is equally impressive. Kim noticed just how fast it went, and mentioned that she thought it was the quickest Amaya has been able to get to 90 in a long time. 
   Afterward Amaya was in a lot of pain (she said a five on the pain scale). She needed pain meds every four hours (that hasn't happened in a while), massages and hot pads for the rest of the day. She asked if she could skip school today. I said we'd wait until after we went to buy her ankle weights to see how she felt. But as we shopped, she complained of more pain and asked to go home, and we did. Before her shower she asked me, "Mom, do you know why its hurting so much today?" I told her that its probably because she's so close to the end, and how hard she worked today at therapy. I told her that I was sorry and sad that she was in so much pain. I told her, "it hurts me so much too." Then she looked at me and said, "I know. Man, you look so tired." The past few weeks her pain had died down considerably and was being managed quite well. Only her toes were bothering her a lot. But, today was rough, and she had a tough time falling asleep.
     This is Amaya with her new ankle weights at home. She wore them for about twenty minutes. I massaged her toes while she wore it (which is tricky with my broken thumb nail). This was only a 1.5 weight, but after all her work today and leaving it on for that long, it gave a nice bend to her knee (as you can see in the picture). She likes her weighs and wore them on the car ride home (one on her left hand and one on her right leg). Then at home when she was doing homework she had them on her hands. What a funny girl!

Tuesday, May 29, 2012

Twelve weeks post surgery

    Today is exactly twelve weeks post surgery. Time is very strange during a lengthening. Twelve weeks may sound like a long time, but it sure doesn't feel like it. Especially since we still have such a long journey ahead of us. But, it is comforting to know that we've survived those twelve weeks. And if we can do twelve, then we can certainly do another twelve or twenty four or forty-eight. I'm so glad that in that time Amaya's hip has healed, she's done exceptionally well (stayed healthy, only had a few minor falls, had only one small infection, has done well with her lengthening and physical therapy). I'm so happy that we're almost to the end of the lengthening (only five days left), and thankful (we were told it could take up to four months for this part, but we'll be done in 13 weeks). 
      Today at the chiropractor's office I talked with another patient there (a kindergarten teacher) who had such kind words to say about Amaya. He was impressed that she knew what she wanted to be when she grew up(an orthopedic surgeon), that she knew what a surgeon was, that she could read so well, how well she was doing in school and therapy. He gave her praise and encouragement. As we said our good byes and left I noticed that several other people in the lobby had been listening and watching us. They smiled at me with such loving, kind, encouraging faces. I'm not a mind reader, but it felt like their eyes were telling me so much. I just smiled back and walked out, a very proud mama. 
We had an hour before our therapy appointment so we went to the playground at therapy to play. Amaya pushed Lidie to the playground (down and up a ramp). She wants the wheelchair to use after therapy when she'll be tired. Before that she uses it as a walker and Lidie gets a ride.
Amaya's first time on a slide with her fixator. She did great! Then she did it about ten times (which is great exercise for her knee; walking and climbing up the stairs). She was playing, but playing is sometimes good exercise/physical therapy.

Then the girls played on the "bongo drums." I had to remind Amaya to lead with her right leg (her stronger leg). Then she said, "my left leg should be stronger, its tough as nails and been thru a lot. But it still is doing good." I told her that maybe in a while it will be stronger, and yes it is definitely tough as nails.
Then she swung on the "mango swing" while she listened to the Eye of the Tiger. She asked if she could hear it six times, because then she could get to ninety degrees today. I think she had an idea that it was going to be tough. Dad gave her a pep talk in the morning, and reminded her to do her best, be nice to her therapists and me. 
After a knee massage, talking about the weekend (while they worked), and stretching the knee then Amaya went into the hall to ride the bi-scooter. She had a hard time keeping her heels down and bending her knee.
Amaya walked into the other gym then did seventeen stand to sit exercises/stretches.
     These are usually a little bit tough, but today they were very tough. She had to work hard to bend the knee and stretch it so that she could sit. After the ninth one she started crying and had to work harder to stretch the knee enough to sit. She usually only cries when it really hurts. She kept at it and did do all seventeen of them. Melissa said that she could tell that hitting ninety was going to be really tough today. I think we could all tell. I was dreading measuring. My heart started to ache. 
     When we went back into the peds gym we started knee bends. At first Amaya's knee was at 28 degrees, that's the least amount she's been at this entire time. She made a quick jump to 50, then sixty. Then had to really work to get to 70. Today was exceptionally hard; almost torturous (for her and me). I fought back my tears and had to stay focused. After about twenty five minutes of pushing and pulling and stretching with all her might (she never gave up!) she said, " I can't stretch any further." But we were only in the 70's. I wanted to say, "okay, were done. Let's go." But we couldn't, we had to reach for 90. But, I desperately wanted to spare her anymore pain. She continued to work hard and push then made it to 80. Melissa said that 90 wasn't a realistic goal for today, and that we would shoot for 84 (because three days off so late in the lengthening process was really working against us). She said that if Amaya could reach 84,we'd stop there. "Promise?" Amaya asked, then her and Melissa made a pinkie promise. So Amaya worked hard, pushing and pulling, thru tears and sweat and pain and made it to 84. She worked so hard for that 84. It took thirty minutes to get there, and we made Melissa late for her next patient (which we hate doing to her and her patients). Melissa said that we can try to work toward getting back to 90 during the week, which Amaya is glad about (she hated not getting to 90). Thankfully Amaya continued to work hard, be kind and didn't give up. She was in pain when we left, but it went away fairly quickly (considering). I had to go to her school for a PTA meeting and she decided to go to school for the rest of the afternoon (about three hours). Her teacher said she did great. After school we went to eat diner at Souplantation (one of Amaya's favorites). Amaya's grandparents offered to treat us there as a motivation/reward for Amaya to reach  90 today. Even though she didn't hit 90, she definitely deserved it; she worked so hard and did her very best. I'm hoping the next few days ease up a bit. We did her physical therapy homework tonight and will continue to work hard to help her maintain her range of motion. We only have five days left of lengthening and are so close to our goal of eight cm. But, the closer we get to it the tighter her muscles will get (they don't grow as fast as her bone does). Amaya is already planning to be back up in the 100's range about a month after her lengthening is done (a little positive thinking never hurt), so hopefully her optimism and hard work will keep her going.  
     Later at her school a parent asked me how therapy went today. As I started to tell her she stopped me and said, "oh, no. You're going to make me cry. How do you do it? How do you watch her like that?" She also has a son with a disability; he's endured many surgeries, therapies and had to work hard to reach goals. So I knew that she understood my pain, and why I can't cry at therapy, but have to press on.  I tried to explain how my heart aches, but how I have to encourage and push Amaya. It's not always easy, but seeing Amaya recuperate so quickly is comforting. And knowing how well she's doing and how close we are is both inspiring and motivating.
     Please keep praying, thinking, and everything else it is you do; we've got tough moments ahead.    Again thank you for reading and being a part of this journey with us. Sometimes we feel so alone on this road, then we see just how many of you are reading on a daily basis and following along and it gives us such comfort and strength. Thank you.

P.S. 
Please excuse any typos, I have a migraine and I broke my thumbnail off and I'm having a hard time typing.

Monday, May 28, 2012

A long weekend

     The nice thing about a long weekend is that we get to relax and enjoy time with our family, the bad thing is that we get an extra day off from physical therapy.  Although Amaya doesn't mind the time off, the bad thing about missing therapy so close to the end is that Amaya's leg gets tighter each day. We did do therapy homework everyday (stretches, massage the thigh, massage her scar, knee bends, exercises, ride the bike, ride the scooter, propped her leg up on the wall for thirty minutes and let gravity pull it down, kept her knee bent all day, etc). I'm kind of dreading tomorrow's therapy session. Monday sessions are always the toughest, but after three days off, and being so close to the end, and how tight her quad is I'm really afraid for how tough it's going to be on her tomorrow (and painful).

A local library had Star Wars day on Saturday and we were able to get a family photo with Darth Vader. Lidie was a bit scared of him, hence no smile from her. 

Amaya and Darth Vader. 

Amaya resting her leg on the wall on Saturday while she reads the Star Wars book.

On Sunday Lidie decided to lay with Amaya and stretch her legs too.

Before we did our afternoon session of therapy homework this is what Amaya's leg looked like at a natural bend. She said it felt like a bend, a small stretch. As you can see it isn't much of a bend and very far from the ninety degrees that we need to get it to during therapy. We definitely have our work cut out for us this week (only one week left of lengthening!). Wish us luck! 

Friday, May 25, 2012

A day with dad

     Josh got to take today off from work so we get an extra long weekend with him. The girls and I enjoyed spending the extra time with him. We had a great time. Here's all we did today; got donuts on the way to school (even though Amaya said they're too sugary), took Amaya to school, went to Target, picked up Amaya from school, went to therapy, went to the hospital cafeteria for lunch, ran an errand, went to the fair then came home and got ready for bed. A fun and busy day.
     At school Amaya did great again. She was only there for an hour and a half (they had minimum day today so she didn't return) but is looking forward to going back next week. While she was there she was assessed in her reading and did excellent. She read words at the 2nd and 3rd grade level at 106 words per minute. That's pretty impressive! Especially considering how much school she's missed and all that she's been dealing with. Dad and I are so proud of her.
   At therapy she started by walking, then rode the bike, bowled with the scooter, did bends, got new tape on her knee (it continues to help alleviate her knee pain). Melissa noticed that Amaya's scar on her thigh is better, but suggested we keep massaging it. She said it only dimples in on one side, instead of all of it, which is better than before (when it dimples it can pull on the muscles underneath and make stretching difficult). Amaya's knee measured at 38 at starting, but she quickly got up to 52 then 60 then 70. Kim added some fun to the bends and gave Amaya rewards after she hit 70 and 80. She did a monkey dance then shuffled; she's a sport and certainly helped distract Amaya from her pain. It took about fifteen minutes for her to reach her goal, but she did it. She was able to hit 91 today! She was in a lot of pain afterwards and was a bit grumpy to us all, but quickly pulled it together. I'm still amazed that she can reach over 90 so close to the end of her lengthening (ten days to go!). Melissa encouraged us to work hard over the long weekend so that next week isn't so hard on Amaya.
    Amaya had another fall today. As we were leaving the hospital I was pushing her in the wheelchair and as we were going thru the parking lot her left leg touched the floor, got caught and caused her to fly out onto the floor. I let out a scream, panicked for a second, then thought, 'well at least we're already at the hospital.' But, thankfully the only thing that was sore was her foot. She managed to not hurt her fixator or leg.  After a few minutes her pain went away.
Sorry this one is so blurry, but Amaya was walking so fast. She wanted to bring her wheelchair in (to ride in after therapy out to the car; when she's tired). she pushed Lidie in because she didn't need it yet. Lidie got a kick out of it, as did everyone  else.

Amaya riding the bike today. She was able to get her momentum pretty easily and did great.


Amaya bowling with the scooter. 

Dad took this video of Amaya doing stretches with Kim and caught Lidie being silly (she did it several times and it was very entertaining for dad and I). I overheard Amaya say, "I like bending." Kim couldn't believe Amaya said that, its the toughest part. But she's funny like that. I think she just likes to get it over with. 

Josh playing dinosaurs with Lidie at therapy. 

I love this picture of Josh and Lidie at the petting zoo at the fair. We got to pet ducks, chickens, a donkey, a kangaroo, goats, llamas, and baby goats (yes I know their called kids, but if I said we pet kids, you might think I met children. ha ha)

Amaya  brushing a donkey. 

Then some of the animals started to try to eat our clothes. The girls thought that was pretty funny.

After we watched a clown show the girls got clown noses and posed with the clowns. 

Thursday, May 24, 2012

Don't be mad...

         Amaya returned to school today and stayed for the entire morning (about four hours). She did great; her pain was managed, she had fun and kept busy. She used her wheelchair at school today. While she was at school Lidie and I picked up Tia Amanda to spend the day with us. We picked up Amaya at lunchtime and headed to therapy. She used the walker to go in, but when Kim met us in the lobby she took the walker away and had her walk on her own. 
Amaya walking into the gym all by herself. 

Lidie volunteered to push the walker for Amaya; she got several smiles from other therapists and patients. 

Amaya walked over bowling pins. Then she went bowling; she rode the scooter into the pins to knock them over. Then she rode the scooter into the other gym.

Me, Lidie, and Tia Amanda at therapy. 

Amaya walked on the stairs, and then bent her knee so that she could sit. Her knee seemed pretty tight and she had to work hard to keep her leg straight. On the way back to the peds gym, Amaya was able to bend her knee on the scooter a bit more than on the way there.

Kim started stretching Amaya's knee.

     Next came knee bends. Lidie started getting feisty, so Amanda took her in the hall to ride the bike. Amaya's knee measured at 43 degrees today (a bit higher than yesterday). On her first push Amaya got over sixty degrees (impressive). Then she made steady jumps to 73, 80, 84, 86. Then Melissa said, "Don't be mad Amaya, but I didn't stop at 90, you were pushing so hard and got 92!" That's the highest she's gotten in over a week! She was so proud and said, "we should tell Dr.Nelson" (I wrote him an email tonight). Later she told me, that she wasn't mad, but happy. Once again she was able to not only meet her goal of ninety degrees, but to exceed it. And it was in less than fifteen minutes. Although it's still intense and difficult, it's definitely a lot easier than it had been the past few weeks. Last night was her last night of antibiotics and we think that they did help. Her hip looks a lot better (I'll try to take a picture tomorrow), and most importantly it isn't causing her any discomfort or pain, which is making her bends easier.

After she recovered from her knee bends Amaya jumped into the ball pit to celebrate with Lidie.

Wednesday, May 23, 2012

Back to school

     Amaya had another good night, with little moaning. This morning she started having some pain on the side of her knee, but with Tylenol and me squeezing it she did fine. Today Amaya went to school for the longest time since her surgery. She was there for two and a half hours and did excellent! When she got home I asked her how it went and she said, "great! No pain at all. I only put my foot up twice." Dad said that when he picked her up after school she had a moment of pain and cried. As soon as he gave her some Tylenol she calmed down quickly. I was impressed that she was willing to go, and that she went even after her morning session for physical therapy. Amaya continues to show us just how resilient she is.Tonight she fell asleep by seven thirty, so you can tell she was very tired from such a demanding day.

The girls cuddling at the chiropractor's office.

Amaya walked into therapy with her walker today (I adjusted it today to make it higher for her. I had to lift it up by two notches then it fit better.) Here she is walking in a circle stepping over the blocks (to work on lifting and bending her knee). As always Lidie is right there with her doing "her therapy."

After jumping on the trampoline she walked off the trampoline, then went from standing to sitting several times. She had to work hard to not have "crazy hips." That's when she has a hard time bending and ends up sticking her hip up in a crazy angle. She said she could feel a stretch in her hip.

Amaya walked up the stairs and climbed into the ball pit.

Amaya did some stretches while sitting on top of the "foam mat thing."

     Today when Amaya started her knee bends Kim measured her knee and it was at 38 degrees. We knew we had our work cut out for us. After a few minutes she got her knee to sixty then seventy then eighty degrees. Melissa kept saying, "you're on fire today!" She was working so hard. There's always a moment when I can tell that her pain is getting intense, and that she's getting tired. My momma heart starts to ache, and I just want it to be over for her sake. At that point she said, "I'll try." She never gives up, then in a few strong pushes (she pushes her bottom down, her knees down and pulls herself down with her arms)she got to ninety! At that moment she's exhausted, crying, in pain and happy that its over. Today she was able to get to ninety in less than fifteen minutes (that's the quickest she's been able to do it in a few weeks. She's been taking fifteen to twenty minutes or more).  Since her hip pain and pin sites weren't bothering her the only pain she was dealing with was her quad muscle stretching (which is normal) and helped her reach her goal quickly.  

At Amaya's school Amaya gave Lidie a ride. They've perfected the wheelie.  

Tuesday, May 22, 2012

Pain under control

      Amaya had another good night, and slept well. She woke up feeling good. I'm so thankful that her pain is manageable (extremely thankful!). Were giving her children's Tylenol as needed, her knee is taped and we're using a hot pad on her hip and knee. She went to school today for an hour before her physical therapy appointment and did great. Her teacher said she did great and only had minor discomfort in her foot (but Amaya massaged it and it went away quickly). Amaya is excited to go back tomorrow and the rest of the week.
      When we got to therapy Melissa was happy that Amaya's pain is under control and passed on some information from Dr.Nelson. She said he emailed her yesterday after our appointment and said that we should be commended for our hard work and how well Amaya is doing. Ugh, its hard to explain how good that made me feel. Praise is helpful and encouraging, especially at this point in the journey (and especially from him). Melissa also said that Dr.Nelson mentioned that if Amaya can maintain her range of motion in her knee until the end of the lengthening then she could drop down her therapy to three days a week. Melissa said that she recommends maintaining it at five times a week for at least one to two weeks after the lengthening is complete then dropping down to three days a week (we would still keep doing our pt homework and stretches at home) after that.

Amaya rode the scooter into the gym then was walking down the stairs. Kim had to remind her to stand up straight, and bend her knees.

Here she is going down the regular size stairs.

Amaya walked back to the peds gym. 

Back in the gym Kim massaged her thigh then had Amaya rub her scar between her pins. Melissa taught Amaya a new homework (to tighten and relax her muscles). Amaya's goal for today was 92, but was only able to get to 90 (which is still good). She worked hard, but once again she got to where she needed to be. 

When dad got home he got cuddles from both girls.

When the girls watched Grease today Amaya got on the coffee table to dance to Grease Lighting (per dad's suggestion and encouragement).

Then Lidie got up and joined in the dancing. She's got quite a cute hip shacking routine down. Of course I was worried that they would fall, but just stayed away and let them do their own thing with dad. And they were fine, no falls.
      Today we had some friends come visit. The girls had a great time playing and having fun. Both girls were asleep by seven thirty (they were worn out!). Amaya walked up and down the stairs about ten times (I don't think she even noticed because she was busy playing). After they left she watched Grease, we did our physical therapy stretches and homework, showered and got ready for bed. Our days go by so quickly. But, I'm proud and happy of all that we're accomplishing. 
     Thanks again for all the well wishes, encouragement, prayers and for reading along and following our journey. Thank you, it means a lot to us and we don't take it for granted. 

Monday, May 21, 2012

Fifth follow-up

Amaya rode the scooter to and from one of the adult gyms (there isn't a picture because she was going so fast! Melissa said Amaya had good balance on it. When she was riding back Cassie told Amaya that she was looking good). Amaya walked up the "baby" steps first to warm up. Melissa asked her if she wanted to go down them first, but Amaya went for the regular ones instead (I love that she doesn't take the easy way out). She's been going up and down our stairs at home.

This is when Amaya goes from a standing to a sitting position. It looks easier than it is; she has to get a good bend (aka stretch in her knee to sit down).

Back in the peds gym Melissa did exercises with Amaya (the same kind we do at home). Melissa could tell that Amaya made big improvements in her "small bends" (the ones we do at home). Then Melissa started massaging Amaya's knee. As she did she started doing some "medium" stretches with Amaya. After that we started measuring her knee bends. She was in the sixties then seventies, then jumped up to eighties. She slowly creeped up from eighty-two to eighty-five. It took a couple of extra stretches to get her knee past that. She started to feel lots of pain in her knee and hip and just when she thought she couldn't do anymore (she said she'd settle for ninety) but then it went from eighty-six to ninety-one (woo hoo! ninety-one again!). Ninety-one was her original goal and I'm glad she got it! It's extra impressive because it was a Monday, Monday's are always harder. Melissa said, "I didn't let you stop at ninety, I wanted you to hit your goal." Amaya was glad that she did that.

Here she is keeping busy while we waited to see Dr.Nelson. She drew and colored the whole time she waited. We waited two hours to go back (not too bad, others had been waiting over three hours). While we waited I got to talk to a mom whose twelve year old son had a fixator on (his was to correct a club foot), but there were still some similarities and it was nice talking with another parent. When she got back Dr.Nelson saw one of her pictures and said, "I didn't know you were such a good artist." Then she showed him that the girl was wearing a fixator just like hers. He laughed and got a kick out of that.


Here's her x-ray. It's pretty impressive. She's gained about 71 or 72 mm (about 7.2 cm or 2.79 inches). The measurement on the x-rays are always a bit smaller than the actual fixator. 

I love this picture of Amaya; she got up out of her wheelchair to check out the x-ray herself. She was examining it closely and told me, "see, those pins look great." She sounded just like a doctor, and I just had to smile. I called her "doctor Amaya," but she said, "I'm not old enough yet, I still need college then medical school." 

Here's another look at it. This one shows the whole picture. As Amaya pointed out "you can barely see where he worked on my hip, because the bone has healed nicely." We were all impressed with how long her bone is now.

Okay here's what Dr.Nelson said at our appointment:
  • He greeted Amaya by calling her "his favorite patient." Which she thought was cool. He also said she was very mature for her age. I told him how hard she works (and how often). He said its a "whole family thing, so good job." We're all having to work hard; it's true this is definitely a team effort, and I definitely appreciated his comments. 
  • He said that we'll do three turns until our next appointment (June 4th; which is two weeks away). So two more weeks of turns and lengthening; Amaya and I were hoping it would be sooner, but we'll deal with it. It only adds four days, but we are getting so close and ready to be done, so we have some mixed emotions. Hopefully the three turns will be a bit easier for her. He didn't want us to be done turning too early before our next appointment, because they need to lock the fixator in place when were done. At the June 4th appointment we'll be done lengthening and they'll remove the rod we use to lengthen (the small silver one with arrows on it). They'll lock the bar in place with two screws so that it holds and doesn't move. Dr.Nelson will be in Haiti during that appointment so we'll be seeing one of the residents. After that appointment we'll start coming in once a month.
  • He was very happy with her range of motion (she can go from 0-91 degrees).
  • He's also happy with the pin sites, the pins and the new bone she's growing. He looked at her top pins again to make sure they were okay from her fall. He said they looked good, and that it would take a pretty big fall to loosen them.
  • I asked if she needed to start taking any extra vitamins or supplements and he said no, that just keeping a balanced healthy diet should be enough. I also asked if weight loss was normal. He didn't seem concerned, as long as she eats a good mix of healthy foods she'll be okay, which she does.
  • The physician's assistant commented on how well Amaya's new bone looked. And reminded us that weight bearing is what helps her bones harden. 
  • Once she's done lengthening she'll continue to lock the bar in at night (it's not painful anymore, more of a nuisance, but Amaya deals with it). I'm not sure how long she'll have to do that for. She'll also continue with daily physical therapy then it'll drop down to two to three times a week. Melissa mentioned to us today that the first week after lengthening it will continue to be tough, but after that it starts to ease up. Amaya's muscles will catch up to the bone growth (she said that since Amaya does so well and works so hard it should be about a month) and then she'll regain some of her range of motion; maybe get back into the hundreds. She won't gain her full range of motion until the fixator comes off.
      At the end of our appointment Dr.Nelson asked if we would meet with a family. Their son Tyson is just under two and also has PFFD and will be having a lengthening in about a year. We were very happy to meet them, show them Amaya's fixator and answer their questions. Amaya was a good sport and showed them how we turn the rod, our tool, how she walks, and answered their questions. She was honest and said that yes it hurts sometimes, but not all the time. We walked them thru our days. I tried to be honest; yes there are tough moments (some very tough), but they're only moments, the entire process isn't tough. We have a lot of normalcy as well. I gave them our blog to look up; so hopefully it can give them more answers and show them what our days are like. I wish them well; lots of peace, health and joy on their journey.