Donuts with Dad

     This morning Amaya's school hosted Donuts with Dad, a chance for dads to eat with their children before school. Unfortunately our physical therapy was at 8 a.m. this morning (the same time as the breakfast). But we made up for it with donuts from the donut shop after our session. Amaya had another good night's rest and slept in until I woke her up to get ready (about six fifteen). It's been so nice having her pain manageable, her (and us) sleeping through the night, and sleeping in a bit.
    We made it to therapy and had Melissa again. We're scheduled to be working with her everyday for at least the next five weeks. It's nice working with the same person everyday. Amaya and Melissa have developed a nice working relationship. Melissa does an excellent job of challenging, comforting, and stimulating Amaya. Not to mention dealing with Lidie and her craziness. She's wonderful.
     Melissa put new tape on Amaya's knee then she measured Amaya's knee before we started, it was 42. Melissa said that was great, especially since she didn't have PT yesterday. And we didn't get to do our PT homework because she had to finish her school homework. Amaya started with bowling lunges then bowling on the bike. Then she went from standing to sitting with her knee bent while throwing balls. She did a few then complained of hip pain (her skin pulls). She called me over in a whiny voice. It's sad because their really isn't anything I can do to help with that. She had me rub her right leg instead. Melissa told her that unfortunately the pain might be a bit more intense today since she didn't stretch the skin yesterday. After that we started the bends/measurements for the day. Her knee was at 55 to start which wasn't bad. We reminded Amaya to stay focused and not let her hip or knee or right leg pain to distract her from her goal. And that the sooner she finished the sooner she would be done and her pain gone. I reminded her to use both hands to pull her body down instead of just one, then we began. She got to 60 very easily then to seventy. Then in a few strong pushes she was up to 80.  A few more then she was up to 89 then with one last push she got to 90. Today I could tell that it was easier for her than it has been in awhile. Wow, that is great news! Her concentration and using both hands helped her a lot. During her bends her right leg was shaking and I massaged it after we were done. When she was done I realized that she hadn't had any pain meds this morning. Melissa said, "you really are mighty girl." Then I gave her her dose. Amaya said that it was good to be back in the 90's. And it was.
    Josh just sent me a text that Amaya and her class walked over to his classroom to tell him that Amaya got up and played basketball with her friends. They were all so excited for her and wanted to tell her dad (what a sweet group of friends she has). Then she helped play hopscotch. She was in charge of throwing the bean bag. It's nice to see her up and playing at school. She had mentioned the other day that one of the lunch workers didn't want her up playing. I told Amaya that I didn't blame her, because Amaya is still a high risk for falls and the lady didn't want Amaya to fall. But, I'm glad it worked out today.

Here's Amaya waiting to start her session. I'm always amazed by how happy she is when we get there, even though she knows how tough it will be.

While Amaya cleaned the stickiness off of her knee I noticed that she's starting to get a tan on there. There's an "x" where the tape usually is. I told her she can pretend its for her middle name Xochitl (which means flower). 

Next Amaya did some lunges to reach for the basketball, that she would use to bowl with and knock down some pins.

I like this picture of Amaya and Melissa a lot. I love Amaya's smile and how her hand just gently sits on Melissa's shoulder. I love that Amaya is comfortable and enjoys her time at therapy. She's told me before that she likes her therapists, even though they make her do hard work. I couldn't imagine going to therapy everyday if Amaya didnt' like her therapists. We've been so fortunate to have such a great team to help Amaya.

Next was bowling with the bicycle. She's been doing so much better at riding the bike (even though the front tire has a flat).

Dad and Lidie played cars at therapy today. I overheard Lidie say, "come on. Let's go to children's hospital for some chili fries." 

As we drove to Amaya's school we all enjoyed our donuts. After a few minutes Amaya said, "here mom, here's my donut. I couldn't finish it. You and dad can share it." Haha. She's so funny. It was the tiniest piece, but I thanked her anyway and enjoyed the tiny piece. 

One hundredth day

      I don't have any pictures from today because there really wasn't anything to take pictures of. We got up, ready, went to the chiropractor, then to therapy. But once we checked in they let us know that our therapist for today had called off for the day. They had called our house, but we had already left and missed the call. We checked to see if anyone else had any cancellations so that they could see Amaya, but unfortunately no one did. I hate that Amaya missed her session, especially at this point (since her muscles are so tight and she needs all the therapy she can to stretch her muscles out). I took her to school and she stayed the rest of the day. I got to spend the rest of the afternoon with Lidie; we played with the water table, had lunch together, went to Lake Arrowhead to feed ducks and play on the playground. She swung on the swings for almost twenty minutes and had a blast. It's nice to see her be so content and happy. It's nice having one on one time with her. Having that time with her almost seems a bit easy, because compared to having two girls, a fixator, a wheelchair, or walker and all the craziness that our days can have having time with Lidie alone is almost a breeze. I'm not sure if I would have felt that a few months ago, but I sure do know. That's something that life with a fixator gives you is confidence; once you can handle life with a fixator you can handle most things.
     Josh and Amaya told me today that they thought today was the 100th day post surgery, so I counted it up. They were right. One hundred days ago we were in the hospital, in Amaya's room getting her settled for her first night. That day seems so long ago. A blur. Ugh (I wish you could understand all the emotions that, that ugh has). In the world of teaching the 100th day is always a milestone, because its such a big number and its at a point in the school year where you're past the majority of the school year (only eighty days left). I wish that was also true in the world of fixators. We have about six months left to go (about 180 days). That's just with the fixator on, we still have a few months after it comes off of therapy, follow-ups, etc.. That seems a bit overwhelming and unnerving so I try to not think about it for too long. But, one hundred days ago I couldn't imagine getting to today, one hundred days later, so I have some hope.
     In other news, we signed Amaya up to be a member of PossAbilities (you can google it and find them on facebook), a community program through the LLUMC. Its a free program for people with disabilities (either from birth or injury). It provides many opportunities and programs. One of which is a swimming class that we signed Amaya up for. She's been hesitant and afraid to try swimming with her fixator on, but when we mentioned swimming with other kids and grown ups with different bodies like her (although they may not have PFFD). She was excited for it and we're excited to see her swim. She'll be starting in August for a once a week class. It was a bit odd signing her up; when I had to describe her disability. It's still weird for me to describe her PFFD as a disability. Even though on a cognitive level I know and understand that, that's what it is. On an emotional level its quite different. Describing her PFFD as a disability or a birth defect is strange and emotional for me. I don't want her to be seen or labeled that way. I never think of Amaya as a person with a disability; I see her as powerful, smart, talented, full of potential and drive (not that you aren't when you have a disability). She's my daughter whom I love dearly, just as she is. I don't want the world to judge her or limit her based on her disability. Perhaps that's why the stares bother me so much; because people only see her leg, or her fixator or her shoe lift, or wheelchair or walker. They don't see Amaya or appreciate all that she is. Stares and labels are one dimensional; too limiting to fully grasp all that Amaya is. The majority of the world is ignorant to life with a disability. I wish that when they saw someone with a disability or heard the word disability they would recognize that here is a person who is different in some ways, but more alike than not. Someone who struggles to do things they take for granted. Someone with great strength of character. Someone with great perseverance and who has endured so much. At least that's the case when they look at Amaya. She's a sweet, kind soul.

I remembered this morning (Friday), that I had taken a couple of pictures at the chiropractor's office. The girls were being so sweet and snuggly I couldn't resist taking a picture or two.

Lidie's eyes in this one make me smile so much. 

A rushed morning

     We had our alarms set, but were also counting on one or both of the girls to wake us up (like they normally do), but today we all work up at 6:47 and needed to be out the door by 7:15 the latest. We had to hustle to get ready and out the door in time. We had our PT session at 8:15 this morning. Since it was so early Josh got to go with us. Since it was so early Josh could have taken Amaya by himself then taken her to school, but she asked that I come too, because she didn't want to have to do the bends and measurements without me. It would have been nice to have the "morning off" but I was glad to go along and help her. If I can ease her pain or make it easier for her in any way I'm more than happy to help. Hopefully in a few weeks her therapy will ease up a bit and then he can take her alone, on days that it works out.  Amaya wore her ankle weight  on the way down and to therapy (for forty five minutes). It's a great way to stretch the knee before we get there, especially on early mornings. Today we got to work with Melissa, it was nice to work with her again. Although all the therapist are nice, and helpful I do see a benefit of having the same therapist everyday. When we did our bends today Amaya worked hard and was able to get her highest number all week, 87! Melissa was proud of Amaya for making a four degree jump since yesterday and told her that if she can continue to make a jump each day, she'll be in the hundreds again soon (maybe a couple of weeks). 

    On the way out we saw Dr.Nelson in the parking lot. He was getting ready to leave and came over to talk to us first. He asked Amaya how she was doing, and how therapy went. He noticed a tear on her eye and said, "I see a tear in your eye, did it hurt?" She said yes. He asked if things had gotten easier since we stopped lengthening. We let him know that we didn't see an immediate change, but are now starting to see some (her knee bends more and her pain has lessened). We told him how well she's been doing; going to school everyday, and her pain managed. He was glad to hear that and thanked me for my email last week. I let him know that we received blog updates from the mission organization, Caribbean Orthopedics, that he works with while he was in Haiti and showed Amaya what he was doing there.  We let him know that Amaya has been going to school everyday and that she has her kindergarten graduation next week. And that she still wants to be an orthopedic surgeon. He smiled and said that was neat. Then he rode off in his Vespa (which upped his coolness factor in our book). I appreciate that he took the time to come over and talk to Amaya and us. He's always been very kind, warm and friendly to us. I'm glad and thankful that Amaya likes him, feels comfortable with him and trusts him. That's very important when you're undergoing such a lengthy procedure. I couldn't imagine doing this with a doctor we weren't comfortable with or that we didn't trust. Dr.Nelson is wonderful. 

   After therapy Josh took Amaya to school. She'll stay there all day then come home, do school homework and PT homework, then eat, shower and get ready for bed. 

After massaging Amaya's knee Melissa did some bends. Amaya's starting measurement was 46, which is is really good considering how early in the morning it was.

Then she did some scoots on the scooter. This works Amaya's knee a good work out because it forces the knee to bend so much.

Next came lunges. Amaya would lunge then pick up a ball and throw a ball at Savannah Rose.

Here's what 46 degrees looks like on the goniometer, which is what her knee measured at when we got there.

And here's what it looks like at 90 degrees. Amaya has to get her knee from her starting point (today it was 46) to 90. Ninety is the goal, but she hasn't met it all week.

Next Melissa had Amaya stand on that step then step off of it with her right leg and bend the left knee. It was a stretch and Amaya had to work hard to keep her hips level.

After that Amaya did the stand to sitting stretches. She did five of those today. 

Before we started our bends to get to 90 Amaya used her right leg to push on the left to see how much she could push it. Melissa was hoping that this would give Amaya's right leg a break (it gets very tired when she bends and starts to shake). She also hoped it would help with hip pain (the skin stretches because the fixator is heavy and pulls on her skin as she bends). Amaya's knee was at 55 before she pushed and then it jumped up to 64 as she pushed.

Dad and Lidie played restaurant. The nice thing about early appointments is that dad can come with us.

Thanks again for reading and being a part of this journey.

Another therapist

     Another good night, but she was up early at five a.m. and so was I. She went to school this morning without any pain meds. In fact the only time she had them today was at physical therapy and at bed time. She had a great morning at school. While she was there I had a couple of hours just with Lidie which was a nice treat for both of us. She has been having to put Amaya and Amaya's needs before herself for several months now and its so nice when we have some one on one time. 

     When we got to therapy we had a new therapist, Jeremy. We had worked with him early on when Amaya first had her fixator on, but not since then. He's very friendly and kind and he always makes it a point to talk to, wave at, give high fives and smiles to the girls. Tomorrow we have Melissa again then Jeremy on Thursday again. We saw Melissa in the peds gym working with another boy. Lidie couldn't resist telling her about her new shoes. Jeremy started with massages and knee bends. I forgot to give Amaya her pain meds before therapy and had to give them to her during her session. Amaya's knee measured at 55 degrees before we started the hard work, which is the highest in weeks. Today we did "the hard work" aka bends. They were tough and painful for Amaya, and tough on Jeremy and me. He apologized several times for hurting her. While she did squats her knee measured at 62. Jeremy said, "were tight" today. I let him know that, that's actually really good. I let him know what her measurements were last week and that she was still able to get to 85 and 90. Jeremy started bending Amaya's knee on his own (he pushed her knee with his hand and her foot with his knee). It hurt Amaya so much! Ugh! It was sad to see her in that much pain. Jeremy was only able to get Amaya's knee to 65 degrees. She asked if she could do it her way (I was glad she spoke up) and then together we got to 83. He was so impressed by her strength and determination. Thankfully after we left her pain died down pretty quickly (about five minutes) then she went back to school to finish the day. Today was the first time she went back to school after therapy. She said the afternoon was "perfect." I was so proud of her for going back to school and glad her afternoon went smoothly. 

I had to take this picture of Amaya last night as she was sleeping. She was so sweet. She woke up twice and got up out of bed (once for me to rub her feet and once for water). I reminded her to just call my name and to not get up (she was so wobbly because its hard to walk with her leg locked in with the bar).

Amaya wrote this for me and I just thought it was so sweet. I love this girl! 

I got to spend some time alone with Lidie today. We got to shop and buy her new shiny shoes and go to the library. She "drove" the recycling truck and had a blast.

Here she is turning around to make sure that she can see the people behind her before she backed up.

Here's Jeremy showing Amaya how he's going to pull and stretch her left leg

Here she is pulling herself forward with her legs. She would do two on her own then a couple with Jeremy's help (he would bend her leg and make it bend more. It hurt a lot!).

Lidie talking with "that little girl" in the Pilate's gym.

Weekend wrap up and a new week

      We had a nice calm weekend. Amaya had a good night Friday night, but was up at five a.m. on Saturday. She had a great day and didn't need pain meds all day (wow, it's so nice to be back to where she doesn't need pain meds often). On Saturday evening Josh and I went to his Principal's retirement dinner. While we were there we realized it was the first time we had both been away from the girls since the surgery (three and a half months ago). It was a nice break, but I felt a bit strange. Thankfully Amaya's pain was manageable and made it easy for us to leave without worrying about her. People had offered before to give us a break or a night out, but Amaya just wasn't in a position where we could leave her alone (she didn't want anyone but her parents, and she had high needs). 

       On Sunday morning I gave Amaya her shower and changed her gauze since we didn't get to do it the night before. She cried a lot because the top and middle pin sites were very stuck. Thru tears she asked me, "why am I the one who has to have the fixator?" "Because you're the one with the short leg." I said, then added "But how did I get to be so lucky to have you as a daughter?" She smiled and that was enough to distract her until we finished. Once we got out and we're getting dressed she asked, "do you remember that first time you gave me a shower and put my gauze on for the first time?" "Of course, how could I forget." I said.  Well I think about it. Later I asked her why and she said, "its a good memory." I'm not really sure what that means or how it could possibly be, but we'll see. I remember it as a traumatic terrible experience that we some how survived.  We drove down to the beach then to my brother and sister-in-laws baby shower. On the ride down Amaya complained about some hip pain, and that her foot fell asleep (I massaged it as we drove). While we were at the baby shower Amaya was up walking the entire time and playing with all the kids, but at one point she got bumped by a friend and got knocked over, then our friend fell on top of Amaya's left leg. Ouch! It hurt a bit, but Amaya was fine. She just took a few minutes alone and recovered quickly. Our poor friend was so embarrassed and sad that she hurt Amaya. It was nice to see Amaya up and walking the entire time we were there.

    Today Amaya went to school again and was there all morning. I'm so glad that she'll end the school year with such good attendance. School is such a good distraction for her and keeps her mentally and socially stimulated. Today was the first time she was at school without dad on campus (he works there as an RSP teacher).

We made a special to stop to take Amaya and Lidie to visit Oscar (this gum ball machine) to get some gumballs. That was Amaya's request/goal/reward for a hard week of therapy last week.

     Oscar is located in Seal Beach and we were so close to the beach we couldn't skip the chance to at least walk on the pier. It was so nice to breathe the sea air. We're looking forward to returning to the beach to swim and spend more time. While we were there Amaya got so many stares from people passing by. It's funny after all this time, I'm still not use to it. Josh said he's over it and it doesn't bother him at all. I wish I felt the same way but, it still bothers me. I just never know what to do, or how to react. If anyone has any suggestions, I'd love to hear them. Maybe its a maternal instinct, to want to spare your child from any stares and unwanted attention. 

Here's Amaya at her Tia Hilary and uncle Juan's baby shower. She started using dad's old Polaroid and wanted to take their picture and give it to them as a gift.

Here's Lidie at the baby shower. What a silly girl.

We had some time before our appointment so the girls got to play on the playground. Dad got to spend the day with us again (hooray for non-work days).

Here's Amaya sitting in the lobby before therapy.You can see that the bend in her knee is improved since last week. She's wearing her ankle weight to help it stretch before her session. She also wore the weight on the drive over.

After bends, and riding the bike Amaya rode the bi-scooter. This is the first time she rode it up the hill. It was also dad's first time seeing the hill that she rides up at therapy. This is the first time she's gone up the hill since she stopped lengthening. 

Amaya stepping off the stairs. Jay had her lunge and bend on the bottom step. These are the small steps but were a good warm up for Amaya's knee. This was Josh's first time in this gym as well.

     Next Jay had her do the bend off of the big steps (normal size stairs). The bigger ones were harder and Amaya had a hard time keeping her hip level as she stepped. Jay said she was compensating for the bend by lifting her hip. 

     Once we went back into the peds gym Amayafixator on. Amaya worked hard, and jumped up in numbers quickly. When she got to 80 Jay was happy with her knee bend so we stopped there (although I was hoping to get 90, but he's the pro, so we did what he suggested.) Jay brought Amaya some Milano cookies as a reward for her hard work.

    Here's what Amaya's top pin sites look like today. Tonight was her last dose of antibiotic. And even though when we saw Dr.Nelson had said that it didn't look infected yet, we did see an improvement in the hip once she was on the antibiotic. Her pin sites no longer have pus, the inflammation has gone down, the bubbling is no longer there, and the pain and sensitivity that she felt is no longer there (that's the best thing). 

Full day of school

     After another good night for Amaya (and us) we had to get up and going for an early physical therapy appointment. We had to leave at seven to make it in time for an 8 a.m. appointment. On the ride down Amaya wore her ankle brace (although she propped up her foot with her right foot for part of the time. Which is a bad habit because it keeps her left leg from fully stretching and bending as much as it can). She also pulled the Kinesio tape off of her knee (as Melissa suggested). That way when we got to therapy we didn't have to spend some of our forty-five minute session taking off the tape. And because Amaya doesn't like how Melissa takes it off (in one clean sweep), and prefers the slower way that she does. When we got back Melissa cleaned Amaya 's knee then applied new tape for the week. Melissa measured Amaya's knee to see her starting measurement. It was 45, which is really good.

This is the mural on the wall that Amaya throws balls at. We've named the girl Savannah Rose (after my unborn niece who's really a boy not a girl after all).

 Next she did stretches with the yellow band (I had done some at home before we left to "wake up" the knee muscles, which Melissa said was a great idea).  

Amaya rode the bike (again very smooth and easily, even though her hip still has a hard time staying down), then bowled on the bike. The bike gives her knee a good work out. 

Here's Amaya doing her lunges and throwing balls at Savannah. Lidie always seems to end up in the ball pit while Amaya is throwing which just adds some silliness and makes herself a target for Amaya.

Here's Lidie playing with some tools. Notice her "free bird" outfit. She loves to dress herself, and all we can do is smile.

Here's Amaya getting new balls out of the pit to toss. She does good job of maneuvering herself down low.

Here she is walking down the incline. She did fine, just went slow to maintain her balance.  

Dad and Lidie played basketball. Lidie doesn't believe us when we tell her that, that's really a soccer ball. But, as long as she's busy and happy I'm willing to let it go. Since our appointment was so early dad got to come along. It's always nice having him along to help deal with any craziness that comes up (like Lidie's fit today). 

Next she did lunges and threw balls at Savannah. Then she sat facing Melissa holding a stretch. While she holds the stretch she picks a ball from the ball pit then tries to guess what color it is without looking, only using "the force." She gets some right.

Melissa measuring Amaya's knee before we start bending and measuring. It was at 47. Melissa said that 

since it was so early in the morning we probably wouldn't get a good bend out of the knee, but that we'd shoot for 85. Amaya agreed that, that would be a good goal for today. She worked so hard, was so focused and was able to hit 90 (yes 90!) in about ten minutes! She was so excited and said, "I can't wait to start getting 100 again." I'm sure in a matter of weeks she will. Dad could tell a huge improvement from the last time he was here (less screaming and crying, more focus and a shorter amount of time to reach 90).

As a reward Amaya got to swing into the ball pit. This is her first time doing it with the fixator on. Melissa had offered it before, but Amaya always said no, until today.

     I love this picture of her in the ball pit. It captured her smile and joy. Amaya had a great day at therapy. She was back to her old self; determined, focused, cooperative, kind, helpful, amazing. On the way out I asked Melissa about Amaya's muscles and how they'll grow. I know that the bone grew new bone, but I wondered how the muscles would catch up. She said that muscles are fibrous and don't grow new muscle, but will stretch and catch up to the bone growth. She said that once Amaya starts bearing more weight she'll begin gaining muscle mass and strength. Right now she doesn't need strength, but flexibility. She needs to stretch until her muscles grow and catch up to the bone growth. We started to notice last night that her muscles under her leg, where her hamstrings are, are starting to get tight again. So I did some stretches before we locked the bar in at night (locking the bar forces the leg to stay straight all night and to stretch those muscles). It's like a teeter totter; when one goes up, one goes down. When her quad and knee muscles start to stretch and relax, then the hamstring ones get tight. Its a constant battle and search for balance. But that's why its so important to work on both bending (during the day) and straightening (during the night) each day.

     After therapy she went to school and stayed for the rest of the day (for six hours; its the longest she's gone since her surgery). Dad and I were a bit nervous. It's a bit reassuring knowing that he works at the same school and is so close to help her if she needs him. But I still worried. She did great. Her teacher mentioned to Josh that she could tell Amaya was her old self. She had no pain (although we gave her pain meds

I won't give up

     Another good night, but she was up at 5a.m. and I wondered if we'd ever catch up on sleep. When she has pain close to the morning time, she can't seem to fall back asleep. She went to school with Josh and stayed the whole morning. On the ride down she wore her ankle weight and kept it on for the entire drive (about thirty minutes). Her teacher said she had a good morning but was a bit tired and grumpy in the middle of the day, but quickly snapped out of it. I think Amaya is really getting worn out and ready for summer break. 

    When we got to therapy we listened to the Eye of the Tiger twice (I wish you could see/hear us. Lidie starts yelling out "woo's"  and we get all excited.). Amaya made her goal for today of 90 and 91 for tomorrow. She wore her ankle weight and rode the wheelchair to the playground and into therapy. When we got into the lobby Amaya got out and pushed Lidie and walked back into the gym. Before we started anything Melissa took a starting measurement of Amaya's knee (she had given Amaya a challenge to start at 45 degrees today). It was at 43, which is pretty good. Amaya made sure to apologize to Melissa for her behavior yesterday. Melissa was very kind, and understanding. After her work we starting measuring the knee. It was a 53 to start. I reminded Amaya to stay calm and do her best. She started bends and did great. She jumped quickly and within fifteen minutes made it to 90 degrees! Her attitude and determination made all the difference. When she was in the 70's and 80's it was tough and painful she kept saying, "I won't give up." I teared up at her determination and the pain she was in. It was such a huge change from yesterday (back to her normal amazing self. I guess even Amaya is allowed an "off" day.). 

When we got to therapy Amaya was standing while I got her wheelchair out. Then I noticed that as she stood her knee was bent. I was shocked. I can't even remember the last time her knee bent as she stood (without any effort). I know its been weeks if not a month or more. It was so exciting and encouraging!

We played in the playground for a few minutes before our appointment. It's funny because as she played there were four older people touring the outside of the facility and they looked over at Amaya with looks of confusion and amazement. It's like once they saw the fixator then they couldn't believe just how much she was doing .

Melissa had Amaya do some lunges. 

She'd lunge forward, pick up a ball and throw it at Savannah Rose (that what we've named the painting of the redheaded girl on the wall; since my unborn niece turned out to really be a boy).

Here's Amaya riding the bike today. As soon as she started I noticed how quickly she was able to gain her momentum and maintain it. She rode around the trampoline five times.

At Chuck E. Cheese's for Amaya's school fundraiser. I know its blurry, but I love seeing her up and playing while her wheelchair sits parked.