A break for Lidie

     I wasn't able to post last night because Amaya was in pain. She was crying when I came back in from putting Lidie to bed. She was tired and her knee and foot hurt. I rubbed her foot and knee which helped her fall asleep pretty quickly but she was up about ten and cried and moaned until about midnight. I rubbed her knee, massaged her knee, and pressed down on it, but nothing seemed to help. I finally fell asleep and so did she, but I don't remember what time that was.
    This morning she was very tired. She said, "why is first grade every day?" she said she likes school, but that she was so tired. I told her we'd try for an earlier bedtime tonight to help her get more rest. She's been falling asleep a little after eight, but we'll try cutting a half hour off of that tonight. I'm sure she'll be even more tired today since she has P.E. at school and then physical therapy in the afternoon. Ugh, my sweet girl. I wish I could give her a break, or at least remove her pain. It's very difficult to watch her try to get comfortable and cry out in pain. It breaks my heart. This morning after a few minutes she was up, dressed and ready for a new day. Each day she pushes through pain, lack of sleep and faces the day with a smile.
  Since Amaya is now back in school and her therapy is cut down to three days a week Lidie and I have some free time. Lidie is enjoying her down time. She's been painting, coloring, playing, relaxing, watching TV, and hanging out with me.  It's been nice not having an agenda or having to rush off anywhere. She's asked a couple of times, "don't we have physical therapy? Don't we need to get Amaya?" It's like she's surprised by the extra time and not sure what to do with all her free time. I'm looking forward to using this extra time with her to do some of the enriching activities that we haven't had time for like story time, painting, walks around the lake, dance class and play dates. 
    Lidie has had to be flexible and put Amaya before her for the past six months (having a fixator takes sacrifice from all family members). Now that we have some free time we can reward her by giving her some one on one attention. In the past two days we've water colored, walked around the lake, joined a play group, washed the cars (she loves playing with the water) and cooked together. We're both enjoying the extra time and one on one attention that she's getting. 
    Amaya had another great day of school yesterday. It was a full day so we decided to have her take her wheelchair to use for long distances. She used it to get to her classroom, to the cafeteria, etc. In class she parks it then walks around without her walker and sits at a regular desk. Josh said that he peeked in on her during lunch and noticed that she parked the wheelchair outside and ate with her friends at the benches. He said she was smiling and having a good time. Ms.Gillespie said that Amaya did great all day; never complained of pain or discomfort. I'm so glad and thankful that her school year is off to such a good start. 

Back to School

      Today was Amaya's first day of first grade. It has also been six months since her surgery, and its been six months that we've been living with a fixator. It seems so long ago, yet it doesn't' feel like the time has gone by fast. It's kind of hard to explain. 

      After getting the girls ready I headed down to Amaya's school first to do some PTA stuff. On my drive down I was thinking about Amaya starting a new school year. That always brings so many emotions: joy, excitement, sadness, nostalgia, etc. I realized that this will be her third school year that she has a surgery. In Begindergarten she had her super knee, in Kindergarten she had her hip osteotomy, had the fixator put on and began lengthening. Today she starts first grade with a fixator on and will have surgery to remove it in the fall. I was a bit saddened by this reality, but had to smile and be proud of just how well Amaya has handled all of those things at such a young age. Some people have asked us if we considered home schooling or recommend it for others during their surgeries. Each child and each case is different, but school was a good outlet and distraction for Amaya and I'm glad we did it like we did.  

     Josh brought the girls down to school and I got to take a break from my PTA duties to go walk her into her class. When Josh and the girls walked in I was pleasantly surprised to see that Amaya walked into school (without her walker or wheelchair). She decided to try walking all day since it was a minimum day. I was so proud of her and all those feelings off sadness that I had earlier just vanished. Several teachers mentioned to Josh that they were so surprised, happy and excited to see Amaya walking around the school. I walked her into class and stayed with her a few minutes. She said she was a bit nervous. After a few minutes I asked if she was ready for me to go and she said yes. She gave me a kiss then we left. As I walked out I was confident that she would do fine.  

     She had such a great first day! She loves her teacher (whom she got to work with last year) and her friends (most of the class is made up of kids from her kindergarten class). She walked all day and didn't need any pain medication while she was there. Several teachers told Josh that when they saw her throughout the day she looked great. As Josh talked with her teacher, Ms. Gillespie, her kindergarten teacher came over and asked how she did today. She asked about her pain and how she did at lunch. Ms.Gillespie said that Amaya had no pain and did fine at lunch time. When Amaya was in kindergarten she was still undergoing the lengthening portion and had a significant amount of pain (especially toward the end) and had a hard time during lunch. It was very nice of Mrs. Griessbach to check up on Amaya. It's so nice having so many teachers and staff looking out for her; it really helps calm my nerves. 

    After school I picked up Amaya in her wheelchair to give her a break after all that walking she did today. We saw the P.E. teacher, Mr. M and he asked about her day and what we thought would work for her during P.E.. I told him that I would ask Melissa what she recommends, but let him know that Amaya is still susceptible to falls and can get hurt if her fixator gets bumped. I told him that Amaya is pretty good about knowing her limits and letting others know what she can and can't do. 

   We had some time to kill before her therapy appointment so we ran some errands. Amaya said she was tired and wanted to go home and skip therapy. It'll be nice having Tuesday and Thursdays off from therapy, to give her a break. When we got to therapy Amaya let Melissa know about meeting Rory, her swimming class, and her first day of school. Melissa was proud of Amaya for walking all day today and swimming. Melissa said that Penelope said hello. We had met her at therapy a few weeks ago, she's undergoing a tibia lengthening and is also six years old. I'm surprised we haven't crossed paths at therapy yet, but I'm sure we will soon. We wish them well as they are in the beginning phase of lengthening. 

    Melissa started by massaging Amaya's knee then stretching it. Then she had her do some squats (which she recommended that Amaya do during P.E. along with riding a bike). Then Amaya did some lunges. After that she rode the bike and did the big loop. When we came back into the peds gym she sat in a bent position to stretch the knee then climbed the ladder. As she did that Melissa had her throw balls to distract her. Before we started bends dad asked Amaya what her goal was. She hadn't come up with one so he said that she should try his goal, "93, in 3." Her knee had a starting measurement of 50 (a little less than on Friday). With a scoot she got up to 69, which is great! I started my stopwatch and she started her beds. She gained a lot quickly, and in one minute and fifty-seven seconds she got 94! What a great way to start a week! We were all amazed! Melissa thinks that the swimming helped loosen and stretch her muscles. On the way out Amaya

     Last night and tonight she was able to get her bar locked in place pretty easily. Although she did cry and moan in pain last night she hasn't tonight (thankfully). She's been asleep now for almost four hours and hasn't cried or moaned once. I hope that continues for the rest of the night. 

Amaya outside of her classroom, ready to start her first day in first grade! 

Here she is at her desk.

After massaging and stretching her knee Melissa had Amaya sit back onto the blue table to stretch her knee as she sat. 

Here she is getting ready to do her lunges. 

Melissa had Amaya ride the bike around the big loop. 

Amaya got to climb up and down the ladder five times.

Here's a close up of her on the ladder. 

Melissa measuring Amaya's starting bend.  

Here she is doing her bends. When she had pain she said, "mom."Which was very sweet and sad. She did so great today! 

After a great day Melissa rewarded Amaya with a ride on the zip-line. Then Amaya sweet talked her into a second ride. I was happy, because I got to videotape the second one.

Lidie also go to ride twice. Her smile tells just how happy it made her.

First swimming lesson

    This morning Amaya had her first swimming lesson through the PossAbilities organization. She was so excited! There were many people there and many instructors, so the ratios were two to one or one to one, which was nice. Its nice that they offer the swiming lessons to their members at no cost. Before the class started Amaya whispered to me, "I'm scared." But once she started she did great! Amaya was paired up with another girl who is autistic. Since it was the first lesson, the first few minutes were spent assessing where she was at with her swimming abilities.  Amaya has taken swim lessons before, but this is the first time with a fixator. Thankfully we were able to get some pool time in early this summer at Aunt Patty's.
   Today her teacher taught her two ways to kick: froggie style and straight up and down. Since she has a hard time moving her left leg, I'm glad she's learning new ways to kick her right leg. I can defintely see how it's helping her move in the pool. She also practiced diving down for rings, which she loved. It's amazing to see how loong she can hold her breathe and how calm she is under water. She has three more lessons and I'm excited to see how she'll grow in that time. We had a great time and look forward to next weeks lesson!

Amaya couldn't wait to get in the water so she walked in the shallow end with Lidie and Josh until class started.

Her teacher Devyn teaching her the froggie style way to paddle. I'm grateful that her teacher is kind, patient and nice.

Look at that smile!

Here she is diving down for rings. She did that about ten times. At the end of class she swam back and forth across the width of the pool and at the end stopped to pick up some rings. "You're a great swimmer!" her teacher commented at the end of class.

Meeting Rory

    Yesterday we all woke up excited to meet our new/old friend Rory and her family. They are here visiting from Virginia Beach. They were in San Diego so we made the two and a half hour trip down to see them. We met them at the playground in Balboa Park and let the girls play for awhile before we made our way over to the science center. After playing and exploring for a few hours we headed to a restaurant for dinner.
     Meeting at the park was such a great experience. The girls started playing while Havalyn and I started talking. After a year of corresponding thru email, facebook and our blogs I already felt like close friends. It was so nice to talk with Jon and Havalyn in person, share our stories, and watch Rory play. Rory is such a sweet, spirited, funny, kind, and adventurous little girl. She also has PFFD like Amaya and is preparing for her first surgery this fall. When she's a bit older she'll have two lengthening surgeries.
     After spending the day with them, we weren't ready to leave! We decided to walk them back to their hotel just to extend our time with them. It's such a comfort to meet and talk with someone whos journey is so similar to ours. They share our challenges, fears, concerns, surgeries, etc.
       On the drive home Josh and I talked about how nice it was to spend the day with them. We've been so fortunate to make friends on this PFFD journey. Josh said that even though he's normally not a very outgoing person he felt so comfortable with them from the get go. It's funny how many similarities we have, down to the fact that we're all vegetarian. We sure do wish they lived closer. The girls are hoping to visit them in Virginia, but for now they've decided to be pen pals with Rory.

Rory hugging Lidie. Rory is such a sweet, loving girl who gives great hugs. 

Amaya and Havalyn talking. Amaya shared what it was like to have a fixator, answered any questions they had and shared her fixator with them and let Rory touch it.

Amaya swung on this cool playground equipment. 

Here's a clip of Amaya swinging on it. 

Which of course meant that Lidie wanted to try it too.

Next to try was Rory. Even though she's much younger than Amaya and Lidie she wasn't going to let that stop her. 

Amaya and Rory heading off to the playground to play. 

Amaya giving Rory a ride over to the science center. 

Here's a close up. Aren't they cute? 

Here's a close up of Rory while her mom held her.

How many girls can you fit on a wheelchair? Three. They were so cute.

Amaya playing with balls in the science center.  

Here's Rory playing with some magnets.

Our friends Jon, Havalyn and Rory. 

Stiff knee

     I didn't get to post last night, because I fell asleep when I put Amaya to bed. I was up several times with her (she moaned and cried in pain again) then woke up at one with a screaming Lidie. She had a nightmare. After about thirty minutes of crying and screaming she calmed down, ate a snack, had some water then went back to sleep. When the girls tried to wake me up at seven today I was tired, but not as much as I thought I would be. Mostly I'm excited for today. Today we get to meet Rory and her family. They flew in from Virginia. Rory is almost two and has PFFD as well. We've corresponded with them for over a year now so we feel like we know them and are excited to finally meet. 

     Yesterday morning Amaya forgot to unlock her bar when she work up. I reminded her to take it out, which she did, but then put back in (when I wasn't looking). I didn't notice until it was time to leave for therapy, a couple hours later, that it was in again. I asked Amaya why she was still wearing it, and she said that when she took it out her knee was stiff, sore and hurt so she put it back in. I can't say that I blame her, but it did frustrate me. I knew that, that would only make therapy harder today, so I explained to her that we need to do things to help her at therapy not make it harder for her. Transition times are always hard on her. Going from bent to straight or vise versa is always difficult. Sometimes more than others, and the longer its been in one position (either straight or bent), the longer and tougher the transition can be. I had her wear the ankle weight on the drive over and told her that she would have to be extra cooperative today and work even harder, because those extra two hours wearing the bar aren't going to help her bend and reach ninety.

     On the ride down she asked me for a straw and a baby wipe. It was a strange request, so I asked why she needed that. She said that there was a gummy snack stuck in her fixator. Ay yay yay. I didn't know whether to laugh or be upset. I gave her the straw and baby wipe and since she cleaned up easily I decided to just laugh about it. At therapy she decided to walk in with her walker. At night her foot has been hurting her and I reminded her that walking helps stretch the muscles on the bottom of her foot and the back of her leg. I was proud of her for deciding to walk on her own.

      Melissa was happy to see her walking in. I mentioned the pain she has in her foot at night and asked if the walking would help with that (I knew the answer but wanted Amaya to hear it form the expert). Melissa said yes, and said that when she walks with a "crazy ankle" (when she turns her foot inward) that, that can cause pain as well. We need to get Amaya walking with a better gait and more often to help eliminate the foot pain. When she started working Melissa could immediately tell that her knee was stiff today. I told her about the extra time Amaya spent with the bar locked in. Melissa said that explained the stiffness and reminded Amaya to take it off as soon as she wakes up. 

    After her work Amaya's knee measured at 59, which was higher than Melissa or I thought it would be. Melissa was honest with her and told her "its going to hurt more today." But asked her to do her best and work hard. She reminded her to keep her head up then suggested doing ten bends then moving her foot back, until she reached ninety. By the fifteenth bend Amaya was in tears, but had gained almost ten degrees. She continued to work hard through the pain. After a few minutes she reached ninety. It wasn't easy, but she did it. Melissa asked that we do some stretches and work over the weekend to help the stiffness go away and help her with her bends next week. 

      When we got to therapy Melissa noticed that Amaya drew on her tape. Amaya thought she wasn't allowed to do its, so she denied it at first. But Melissa said she could. She said she could change it each week. Its kind of like a temporary tattoo. Amaya said its just "some lines, a happy face, with angry eyes."  

I like this picture of Lidie playing while Amaya works in the background.

After Amaya sat down to stretch her leg Melissa had her throw balls while she bent her knee back. As she was trying to bend it Melissa said, "it's not bending. Let's get it bending." So we decided to try riding the bike.

Amaya asked if she had to do the big loop today, or could do the small one, but Melissa said that today she had to do the big loop because her knee was so stiff.

When we got back into the gym Melissa had Amaya push herself on a stool. She hasn't done that in awhile, but Melissa wanted to try it since it seems to help bend the knee.

Melissa challenged Amaya to a race. She only used her big toe, and Amaya could only use her left foot. 

After the race Melissa had her do some more scoots while she pulled on the knee to help stretch it even more.

Amaya's knee bends. Its always hard to sit there and watch her in pain, but after I'm so relieved, and proud. Afterwards Melissa said, "it was a rough ninety, but we got there." We had read a poster in the hall earlier as she rode thru the hallway. It said that the pain is minimal compared to the joy of reaching a goal (I'm paraphrasing). But there definitely is some truth to that. On the way out Amaya said her pain was at a five, which is average for after bends. And within a few minutes she had gotten over it. Later I noticed the dried tears on her cheeks, which melted my heart a bit.

Later we went to Costco. Amaya sat in her wheelchair (its to big for her to walk in there), then she held onto the back of the shopping cart while I pulled them both. It wasn't easy navigating the crowds, but we had fun and got some smiles along the way.

Later we got to visit some family friends. I caught this picture of Amaya reading to her friend Alex.

A very tired momma

      It's hard to explain how tired I am tonight. The past weeks of interrupted sleep are catching up with me. I don't usually do well on little or on interrupted sleep so I'm not surprised. But, I sure do hope I catch up soon. And more than that, I hope Amaya's knee pain subsides. It wears me down to see her in pain night after night. The only good thing is that she doesn't seem to have that pain during the day. I can't imagine how parents who work deal with all of this, I'm very fortunate to be able to stay home with Amaya during this journey.
     Today we had an early morning. We went to Amaya's school to do some stuff for PTA (I'm the treasurer this year). While we were there lots of the teachers came and said hello to Amaya and Lidie. Amaya got to talk to her teacher for this next year. Amaya says she's ready for the start of the next school year. She also got to see her kindergarten teacher, Mrs.Griessbach. Mrs.Griessbach was pleasantly surprised to see Amaya up and walking around. She said she was so proud of Amaya and all she's done. She said she gets tears of joy when she thinks about Amaya and all she's done and is doing. Amaya told her that she's been swimming, boogie boarding, walking, and will be starting swimming lessons soon. Mrs.Griessbach said that Amaya looked so grown up (especially since she lost her tooth) and how taller she was. Amaya has done a lot of growing these past six weeks.
       I'm always touched by the kindness, empathy, care and concern that the teachers at Amaya's school show for her. Even teachers who don't work with her make an effort to talk to her, and keep up with the blog. We're so fortunate to have her in such a loving school community. I wish that I could say all interactions were that way, but they're not. On our way in today Amaya was wheeling herself in her wheelchair while Lidie and I followed behind. As we entered the school the first kids we saw were two boys, about fourth or fifth grade. They both looked at Amaya, then one made a sound of disgust and a face. Then he turned and laughed and whispered something to his friend. Then they both laughed. It was mean and rude. I was instantly filled with many emotions; anger, sadness, frustration, and a deep desire to reprimand them. I choose to walk past them, and thankfully Amaya didn't notice them (she was concentrating on wheeling up a steep walkway).  
   Just as I was starting to get thoughts and feelings about Amaya having to go to school and deal with such rude kids I was reminded that not all, in fact most kids aren't like that. A second grade girl came over and introduced herself to me. She was so happy to see Amaya and asked how she was doing. This girl's kindness reminded me that for all the mean people in the world, there are plenty of kind accepting ones. I'm glad and thankful that Amaya doesn't have to navigate school all alone; her classmates, friends, teacher, other teachers, and staff, as well as her dad (who works there) all help her. And quite honestly she handles herself pretty well. Although I'd be lying if I didn't say that I wished I could spare her from all the ignorant, rude, mean people in the world. 

Feeling like the white rabbit

     On the drive over to therapy this morning I felt just like the white rabbit from Alice in Wonderland. "We're late, were late." Is what I kept thinking, and saying to myself. I don't like to be late, so that was quite a stressful situation for me. We give ourselves an hour to get to therapy, which is usually enough time. But, today we were headed there from the chiropractors office. They were busy today and so we had to wait more than we usually do to be seen. By the time we left the chiropractor's office we would barely make it in time to our therapy appointment. I hate leaving on such a tight schedule, it doesn't give enough "wiggle" room. On our way we got stuck in bumper to bumper traffic. There was a bad car accident up ahead. It took us about ten minutes to get off on the next exit. Then another twenty minutes to get over to therapy on the street. And we just kept getting delayed over and over; getting behind a slow driver, getting caught at a red light, getting stuck behind a cement mixer,etc.. Ugh, I was getting pretty frustrated and upset. It's moments like that, that make me realize just how tired, worn out and stressed out I am; because my normal self wouldn't get so worked up about things that are out of my control. But I found myself getting frustrated, upset, nervous, mad and short tempered. I was dreading being late because I didn't want Amaya to miss out on any therapy time. And I was nervous that we wouldn't have enough time to do all the things she needs to do in a session. I worried that they would make us reschedule and cancel our appointment for today, which I really didn't want to happen since Amaya needed her knee to be re-taped. I had to take many deep breaths, and tried to tell myself that things would be okay. I tried hard to stay calm, because I don't want to model that behavior for my girls. I talked them thru my emotions and reaction. Once we go to therapy and saw Melissa I was fine.
      By the time we got to therapy Amaya had already missed half of her session. I wasn't very happy about that; I know how important her sessions are and I hated her missing any valuable time. Melissa was very understanding and told Amaya that she could work until Melissa's next patient arrived. On the drive over I had Amaya remove the old tape from her knee and then cleaned off the glue with a baby wipe, so that when we got back we didn't have to waste any of our time on that. Melissa massaged Amaya's knee, then stretched it. She had me do some stretches on Amaya's with the band while she got new tape then applied it. We only had time for Amaya to do some lunges, climb the ladder then start her bends.
     Melissa told her that since she didn't get to stretch her knee enough she could make 85-90 her goal for today. Melissa told Amaya that since time was out (her next patient was already there) that she had to work quickly and see how much she could bend in a short amount of time. Amaya's knee was at 57 degrees to start. Amaya worked hard and fast. She was focused and pushed herself. She was able to get 90 degrees in what Melissa called "record time." She said, you just set the "Olympics' of bending record." We were proud of Amaya.
     Melissa told us to make sure we do some stretches at home to make up for what we weren't able to do there today. So before bed Amaya did some with dad. The rest of the day was busy, but at a slower pace and we were able to catch our breath a bit. Yesterday our temporary disabled parking permit expired so we had to park in non-disabled spots everywhere we went. I must admit I had gotten use to the extra space, and room that they come with. Its tricky getting both girls out, and a wheelchair or walker in a tight spot. Getting back in with groceries or anything else is just as tricky, if not more. We'll see how we do, if it proves to be too difficult we might ask Dr. Nelson for another parking permit.

This is the band we used to bend her knee with. I held it and Amaya pushed against it. Its not as strong as the pink one we use at home.

Here she is climbing. She went up and down five times today. 

Sitting into a bend was tough today. Amaya could feel the stretch. 

     Later we stopped by a favorite library of ours. We looked at the animals, then explored the recycling area. Amaya pedaled the bike. The bike is set up so that when you pedal it you can turn on a light, fan and bell by the energy your body is creating. It was at a funny angle, so she couldn't reach it very well, but I made her do several pedals, so that she could bend her knee since she didn't' get to at therapy. She was able to pedal fast enough to turn on the fan, which is quite impressive.

     Later we stopped by her school for a PTA meeting. While we were there several teachers said hello and asked how she was feeling. It was nice to see so many make the effort to come talk to her. Several commented on haw amazed they were by how well she was doing, how much bone she grew and asked about how much longer for her new bone to harden and heal. I had to explain to several people that she's no longer growing new bone, but letting the new bone harden and become strong enough to support her so that the fixator can come off (that's what's supporting her leg now). Its still confusing for some people. But they were excited to know that the fixator should be off by December.

     Her knee is still sore and causing lots of pain. Its mostly at night when she has her leg locked in place.   Last night she had the same pain and interrupted sleep. Tonight she's woken up once already. I'm so tired, I have such a hard time catching up on sleep, and I can't tell you how badly I want a nap. Thanks again for your kind words, and support along the way.