amaya at lake

amaya at lake

Wednesday, February 27, 2013

Report card

    On Monday we had Amaya's second conference and got her report card. She got all "exceptional" on her report card except for a "good" on physical education. I was proud of her and happy to see how well she's doing. I was kind of surprised by how many days she missed compared to the first semester. During the first semester she missed 15 days of school and had 14 tardies. This semester she missed 39 days and was tardy 30 days. That means almost everyday she either arrived late, left early or was absent. In spite of that she still managed to do so well on her report card. That's great! During the first semester I scheduled most of her therapy appointments in the afternoon after school got out. But that proved to be hard because she wouldn't get home until after six then she would still have homework to do and get ready for bed. She was tired and worn out from a long day and a forty-five minute therapy session. During the second session we had less options for therapy times so I took what I could get, regardless of school hours. Although she missed a lot of school she still managed to get good grades and keep up with her school work. She works so hard not only at therapy but at school.
    On the drive to therapy I got a bit teary eyed. This is our last week of physical therapy. Can you believe it? After nearly a year (one week shy) of physical therapy we're almost done. I'm speechless. Honestly, I'm having a hard time putting words to my emotions. I'm trying to absorb it all and deal with it as best as I can. We're definitely going to miss seeing Melissa every day, but we'll be glad to be done. Amaya wrote a card for Melissa today. Later she said, "I forgot to say 'thank you for helping me get to this day.'" She realizes that she couldn't be where she is without Melissa. I realize that, and that means the world to me. I know how much Melissa has done for Amaya (tearing up). And this is where I usually stop, because its just so emotional. I'm overwhelmed with gratitude.
I'll let you know how tomorrow goes.
Melissa was impressed with how much weights Amaya did when she met with Jay at her last session. So she had her wear a 3 lb. weight while she did her leg lifts. She said it started to hurt so Melissa massaged it then the pain went away and she continued with her lifts. Melissa was impressed with how well she did with that much weight.
When Amaya did these lifts Melissa said she was "doing great!" She could tell that Amaya was using the correct muscles to do her lifts. I told Melissa that when we do our nightly therapy we rotate our exercises but always do that stretch. It's really starting to make a difference.
Then she did side lifts.
Then we went in the hall to run. Amaya still needs a bit of work with that. To help Melissa has her do "high knees." She's able to go faster now and is doing good.
Then Amaya worked on skipping. She did a lot better this time. 
To work on balance Amaya had to stand on her left leg while touching the bean bags with her toes.
Then Melissa had her bend over to pick up the bean bags. She's still very wobbly so we've started doing hose at night as well. 
Amaya did her knee bends. Her starting measurement was 132! That's her highest number yet! That's huge when you realize that 135 degrees was her long term goal. And 135 degrees is what Melissa said is needed for walking, stair climbing, and running. She continued to bend until she got to 141 degrees. 
After knee bends Amaya did three minutes on the elliptical. Look at how smoothly she's going!
On the way out of town Amaya said, "Loma Linda is for helping people. they have hospitals, children's hospital, the Ronald McDonald house, PossAbilities, urgent care, the triathlon. It has a lot of stuff here to help people and lots of people who help you, like Melissa and Dr. Nelson." 

Scars

      I saw this on someones Facebook page the other day and it caught my eye. It made me think of Amaya's scars and the power in her that she showed as she endured, persevered and survived. That line at the end, "I have survived" fits so well not only for her but for us as a family. Our scars aren't physical like hers they're emotional ones. Even Lidie has some scars, and she too can proudly say she survived her sisters lengthening. It wasn't easy for any of us, yet we can all say we've survived. And that's enough. Enough for now and enough to prepare us and sustain us for the next lengthening. 
This is her bed sore on her heal. Its healing quite nicely.
This is her shin with three pin site scars and the scar across her knee is from her super knee.
Here's the side view of her knee. You can see the scar from her super knee continue up her side and the three pin site scars there.
     This is her thigh with her three pin site scars; these were the worst ones. The long scar is from her super knee and the little one above is where she had her rush rod inserted. There's also another small one on her hip from her hip osteotomy. 
     That's thirteen scars in all. And yes it still makes me tear up looking at them. Because I appreciate all that those scars represent, remind me of, and what they did for her leg.

Thursday, February 21, 2013

Good Luck Caelan

    Yesterday we got a call from physical therapy asking if we could move today's appointment up by fifteen minutes. It wasn't a problem so we agreed. But, today even though I left with plenty of time I got caught behind a funeral procession and then arrived at Amaya's school while she was a recess. Those two things caused us to arrive ten minutes late to therapy. Ten minutes isn't a huge deal when you have a forty-five minute session. But when today's session was moved up they changed it to be with Jay and they only scheduled it for thirty minutes. Jay went ahead and took us anyway and gave us a quick session. He focused on the key things that Melissa had mentioned to him and asked me to finish the rest of the stretches at home. I told him that we're still doing our nightly therapy homework. He replied, "It shows." He said the atrophy in her left butt muscle was the only thing she still needs to work on. 
    We got to do quite a bit on those fifteen minutes but didn't have time for knee bends. But we did those and other work at home today. We only have two sessions of physical therapy left, can you believe it? I can't. I'm still in shock. 
After warming up by jumping on  the trampoline Amaya bending her knee up to her chest.
Then all the way down to the ground. 
Then with two pound weights on her leg she did thirty leg lifts. 
Then side leg lifts with the weights on. Jay had to help support her leg with this one.
Then Jay had her kneel on the mat to work on her balance. He had her tighten her butt muscle to help hold herself up.
She did well with that so he added a challenge for her. He had her reach for a bean bag form his hand then toss it across the room to make a basket.
Here's another look at her. You can see Lidie doing her "work." She set up some bowling pins for her to drive around then knock over with a lawn mower. She's funny!
Amaya doing high knees with the two pound weight on.
Then we went in the hall to run. Jay asked Amaya if she wanted to go up the hill and she happily said, "yes!" Then he asked if she wanted to run halfway down the hall or the entire hall. She said she wanted to do the entire hall. I was so happy she set such a high standard for herself. She ran the entire way down the hall, up the hill then back. She was so fast I had a hard time keeping up with them.
This is half of the hall that Amaya ran down and back. It's the most she's run at one time. 
      On our way out someone caught my eye in the adult gym. It was Caelan's mom, Cindy. I was so happy to see her because I had a reminder on my phone to email her today. Tomorrow is a BIG day for Caelen and his family. He is getting his fixators removed. He has had one on each femur for the past few months to turn his femurs. He's missed school, and worked hard at therapy these past few months. He and his family have worked hard and sacrificed a lot these past few months. 
    We got to talk to his mother and little brother while he finished his therapy session. Cindy and I talked about treatment plans for the kids and shared our amazement and appreciation for Dr. Nelson. I tried to give them some idea of what it would be like when the fixators come off. We're so happy that they're time with his fixators is done. Cindy and I got to compare notes. There's an empathy and understanding that only someone who has walked in your shoes can give you. She knows what pin site cleaning and gauze changing is like. She knows how tough therapy sessions can be, not only for the patient but for a mom watching, and for the four year old sibling who gets antsy. Since I know what life with a fixator is like I have a great deal of empathy and sympathy for Caelan and his family. I told him what we've said to Amaya, 'once you've survived a fixator you can survive anything.' He's proven his strength, endurance and courage. We're hoping once he recovers from his surgery that we can meet up with his family and hang out. Out in the parking lot I got a picture of Caelan and Amaya, fixator friends. 
   Please send your thoughts, prayers and love to Caelan and his family. We wish them a speedy recovery. We're proud of you Caelan!

Wednesday, February 20, 2013

Opthamalogist appointment

    Yesterday morning Amaya had her check up with the opthamalogist. When she had her eye exam back in December the eye doctor said her eye pressure was elevated. Her readings were twice the normal reading. They told us that was a sign that she could have glaucoma and that it could lead to blindness. We were obviously surprised and worried. We've been waiting ever since for a referral and appointment.
    The night before the appointment Amaya mentioned her anxiety and fear. We tried to calm her, but I understood her fears. At the last appointment they did the eye pressure test (the puff of air in the eye) about ten times in each eye. I was also a little nervous. I wondered what it would mean if she did have it, what would be next, etc. I tried hard to stay calm and not worry. I've had to learn to just wait until I know something before I start to worry. When the opthamalogist came in he said that as a pediatric opthamologist he never checks for eye pressure in children because its hard to get an accurate reading, and it usually scares and traumatizes the child and unnecessarily worries the parents. He said she wasn't showing any other signs of glaucoma, but decided to dilate her eyes and examine them to make sure the eyes looked healthy. When he left to get the nurse Amaya starting crying and getting scared. She didn't want eye drops or anything. We finally got her to calm down, and I was SO thankful that Josh went with me to the appointment. He does a great job of keeping us all calm. While we waited for the nurse Josh told Amaya that after having a fixator pretty much everything else in life is easy. Getting eye drops and your eyes dilated isn't very comfy, but by no means compares to a fixator! I don't think she realizes how tough she is! When the doctor returned he looked at her eyes and said that her eyes were "normal." Wow, I was so happy!
    Over the past couple of months we've had the extra stress and worry about her eyes and the bed sore on her heel. Its so nice to finally have both of those things taken care of. Well, for the most part. We're still taking care of the heel, but at least we know we won't be having surgery on it any time soon. I can't tell you how nice it is to have stress removed. One less thing to worry about!
Later we went to our therapy appointment. They started on the mat doing leg lifts.


Melissa put a two lb. weight on Amaya's left leg and had her do leg lifts. That's half a pound heavier that she's been doing. She did really well with the extra weight.
Then she climbed the ladder with the two pound weight on. She did really well. I told Melissa that over the weekend Amaya climbed up and down stairs (at least thirty) and did excellent. We were in Hollywood and there were a bunch of stairs at a mall and I noticed how well Amaya was climbing. She was alternating her feet on every step, keeping her balance and not turning her foot in. These are all things Melissa has been working on with her. Its nice to see her progress! 
Then Amaya did her "donkey kicks." Amaya says this one is tough work, but she's getting better at it. Melissa said this would be a good one to do at home for homework. 
Then we went in the hall to work on running. But instead of just running they played tag. Amaya tried to tag Melissa who would then tag Lidie then Lidie would chase Amaya. And over and over. It was fun! Its great how Melissa turns work into fun! I mentioned to Melissa what the other PFFD person told us the other day about how hard of a time she had without her therapy. Melissa has played such a HUGE role in Amaya's lengthening and recovery. And she's made it fun for Amaya so that she wants to keep up with her therapy homework. After running Amaya practiced skipping. She kind of got it, but had a hard time finding a rhythm.
After some tip toe work we went into the adult gym to do some balance work. Amaya stood on her left leg, and right tip toe and gave Melissa a high five with her right hand. She was quite wobbly but Melissa had her do it until she was steady.
Back in the gym Melissa put 3 lb. weights on Amaya's left leg and had her do leg lifts. She did really well with that even though it was twice the normal weight. 
Then Amaya did some balance work with cones. Bending over to pick them up was a little tricky. She was wobbly, but then got the hang of it.
After that she stood on her left leg to see how long she could balance on it. Melissa counted thirty-eight seconds! It was about a month ago that she was doing fifteen seconds.
Then came the knee bends. Amaya had a new high starting number, 128! It excites me because I know our homework if paying off! She quickly jumped to 134. Then said, "it doesn't even hurt." I think she was pretty surprised by that. Then she jumped and worked to get to 140. I asked if that's all she could do and she said she could do "a little more." With a push she got an extra two degrees for a new high number, 142 degrees! I have a feeling we will continue to get "new high numbers." And that's fantastic!

Monday, February 18, 2013

The importance of therapy homework

The girls doing nightly therapy homework. Amaya does a great job of doing therapy homework without gripping or complaining. Lidie is sweet and sometimes joins Amaya for exercises. Therapy homework has been so important in helping Amaya lengthen, heal and recover quickly and so well. The other day a woman with PFFD mentioned to me the importance of therapy during a lengthening. She said that when she did her lengthening she didn't keep up with her therapy exercises and her muscles didn't grow as much as her bone did. She said she had a hard time walking for about two years after her lengthening and needed a cane to help her. I'm so glad that Amaya has done such a great job of doing her therapy at her sessions and at home. It has made such a difference. For anyone getting ready to start a lengthening I would stress how important therapy is to the lengthening process. Both at physical therapy and at home.
I love this picture of the girls cuddling in the lobby before therapy on Friday. 
Amaya started by doing high knees, trying to kick her butt, then kicking the soccer ball against the wall. Melissa mentioned that she could tell how well Amaya's balance was when she was kicking the soccer ball. 
While standing on her left leg Amaya moved the cones form one stack to another. She was steady and not wobbly.
More balance and cone work.
Stool races in the hall. Amaya went forward and backward alternating legs. Melissa said that going forward and backward using different muscles.
Then they did some running work in the hall. Melissa was happy with her running and saw some improvement.
Amaya needed some help doing backward lifts. 
Amaya did her backward leg lifts with weights on. See how high her leg got!
Then Melissa had her do a new exercise. She tied a band to her foot and had her pull her foot forward. We'll try adding this to our nightly therapy routine.
Then Amaya started her knee bends. She made 142 her goal for the day. She started at 120 degrees then jumped to 127, then 133. As she got close to 140 degrees she asked if she could just go to 140 degrees instead of 142. I could tell she was in pain. But she pressed on and made sure to get to 140 degrees. When she was done she said her pain was at a "five." But didn't need any pain medication. 
On Saturday we went to the Cabrillo Aquarium in San Pedro for a bit. We were there almost a year ago. We went the weekend before Amaya had her fixator put on to distract the girls. Its hard to believe its been almost a full year. Wow. 

Tuesday, February 12, 2013

Trip to Amy's farm

   On Monday the girls and I went to an organic farm with our friends, Amy, Ran, Tyler and baby Kristen. We had a great time! There was a petting zoo, an organic garden, the girls got to pick chard, feed a pig and their favorite was milking a cow.
Amaya tasting the Swiss chard she picked. Both girls loved it and asked me to bring some home. Just before the girls picked their chard the farmer told us that when picking it you want to pick some with holes in it because it means that it had to fight hard to survive and its healthier for you. I was surprised I thought that you would want some that looks perfect. But, I immediately thought of Amaya and her pin sites. I told her, "hey, its like you Amaya. You had holes in you, but now you're stronger!" 
The girls petting a lamb. 
Amaya petting the two thousand pound eighty year old cow Tina.
The girls posing with grandma Tina.

Two donuts

This is what Amaya's heel looked like this morning after I taped it. Since the bedsore is getting smaller (that's great news) I've been using a smaller amount of gauze and tape.
Amaya started by doing five minutes on the elliptical. She went so fast that it seemed like the five minutes went by so fast!
Then Amaya climbed up and down the ladder five times. Melissa still spots her because she get a little wobbly sometimes.
Then Melissa had Amaya walk up and down the hall doing high knees while wearing a 1.5 pound weight on each ankle.
Then Melissa asked Amaya to do side leg lifts with the weights. Amaya had a hard time so Melissa helped her.
Then Amaya did some kicks with the weights on. She did really well. Back in November she couldn't use any weights at all, so this a huge improvement!
Then she did backward leg lifts with the weights on. Look at how high  her leg got with the weight on! Amaya said it was hard work, but she was able to do it.
Then Melissa had her do side leg lifts without her weighs on.
Then Melissa had Amaya walk on the balance beam. She pulled this one out because its the most narrow and the hardest to balance on. Both girls did it and did great!
Melissa asked Amaya to pull herself on the stools. Amaya asked if they could race. Lidie joined in on foot and won. Amaya did a great job bending her knee to pull herself forward.
Then Amaya jumped on the trampoline while trying to jump and and give Melissa a high five. Melissa had her do that ten times.
     Then it was time for her knee bends. Her starting number was 123, one less than Friday's number. On her next bend she got to 130! That was awesome! She did so great! I asked if maybe she could get 137, or 138, but she said "hey, maybe I can get 140!" I said, "I dare you!" Then added, "I'll buy you two donuts if you do." "Really?!" She asked. I said "sure, but maybe not at the same time." This was the motivation she needed. She kept bending her knee until she got 136, 137, 138, and then got 140! Can you believe it?! That's five degrees past her therapy goal, and the highest number since last March 6th. We were amazed! Melissa said she was going to email Dr. Nelson since she was so impressed. 
   After we left we went to get her her donut. She was so happy. She definitely deserved it! We took her to school then Lidie and I headed home. Then the mountain we live on was on lock down due to police activity. Because of that Josh and Amaya were locked off the mountain. Once the road finally opened up Josh called me and said they were going to go by Urgent care first. Apparently Amaya was skipping then tripped and fell. She hurt her hand. She said it was a ten (in terms of pain) when she fell and then a five or six about fifteen minutes later. I'm hoping its not broken. Josh said it stated to bruise up and she couldn't grip or pick anything up with it. Ugh. I'll keep you posted on her hand.