Catching up on sleep

     Last night I feel asleep while putting Lidie to bed. In fact I think I fell asleep before her. I was out by seven thirty, woke up at midnight to give Amaya pain medication then fell back asleep. When I woke up this morning it was the first time in weeks that I woke up feeling rested and ready for the day. Although Amaya moaned and cried a little bit last night and the night before I can tell a difference from what she's been experiencing the past few weeks. I think the longer tape on her knee is helping. The past two nights she's fallen asleep without me massaging her knee. Even when she woke up last night she asked me to rub her foot not her knee. So I'm a bit optimistic that her knee pain is starting to dwindle.
    Yesterday she had therapy with Jay. She had an hour long session with him. Normally he sees her for thirty minutes, but its never quite enough to get her knee to bend to ninety degrees. So when I booked her appointments a few weeks ago I asked for a longer session.

Jay had her start with the bicycle. She rode down the hall, up the hill then back.

Then she rode down the hall, up the hill and back on the bi-scooter. When she got back in the gym she did some lunges and bends.

     Next she worked on the total gym machine. I mean worked! Jay had her do sets of thirty. She did some bends with both legs then some with only the left (which are harder). Then Jay had her hold her leg in a bend for the count of thirty. Then he had her leg bent and would use to mat that she lays on to move it closer so that her knee bent more. It was getting a great bend, but hurt. After she finished a set of thirty, he would say, "one more." Amaya, even though she was in pain, would say okay and start right up. As you can tell in the video she was tired, in pain and working hard. But she never complained or whined or gave up. She was amazing!

    As she was working one of the other therapists came over to say hello and asked how she was doing. He said that she looked good and then complimented the tape job on her knee. Each time we're there I see so many therapists smile at Amaya and encourage her. I'm so grateful for the loving environment that all the therapists have created there. After going for almost six months I feel like we know many of them. 

     When we got back into the gym Jay stretched Amaya's knee as she leaned against the drum. That's what Jay called it. Amaya asked, "isn't this a cylinder?" Her kindergarten teacher would be proud. 

     After the stretches we started her bends. It's always a little different when we do bends with someone besides Melissa. Amaya and her have set up a routine and system that works for them. Her starting knee measurement was fifty five. When Jay asked her to start, she didn't really do anything. She didn't bend or pull or anything. She got to sixty and stayed there, for a couple of minutes. I started to ask her to do the stuff that Melissa usually does (bend, pull, move her foot back,etc.). But she didn't like me doing that and was getting frustrated, and rude.  She started telling me no and saying she couldn't do it, crying, saying she was tired. It was frustrating. Lidie decided to get whiny at the same moment, so I had to handle both of the girls at once. Jay tried to get Amaya to stay calm and to start bending. She fought it and kept whining and crying, saying she couldn't bend anymore, hitting me and telling me to leave her alone. I wasn't sure if she was tired from the extra fifteen minutes of therapy (she normally does forty five minute sessions with Melissa) or thrown off from not having Melissa to help her. She finally started bending but kept whining and complaining. It was so frustrating and nerve racking. I told her she had to get at least ninety degrees and to keep going. Sure enough she got up to ninety fairly quickly once she put her mind to it. She complained that her knee hurt, so Jay rubbed it and stretched her leg for her. 

   On the way out to the car I talked to her about her behavior during bends. I knew better than to try to do it while she was doing her bends. As soon as I asked her about what happened she said, "I was mean." She knew she was wrong, but she also though she was justified because I was "trying to help her." She said, "I don't want any support." Ugh. I just had to take a deep breath and give her space. It's not always easy to parent. Some days it seems like its extra difficult to parent when your child is wearing a fixator, especially during/after therapy.

   By the time we go to school she was back to her normal self. I reminded her to ask her teacher if she needed any pain medication, especially since she worked so hard at therapy. She said she didn't want to bother the class or her teacher. I reminded her that her teacher wants what's best for her and wouldn't mind if she asked for medication. She also said she hasn't asked to use her pillow to prop up her fixatorAmaya to her. She confirmed that Amaya could use her pillow and ask for pain medication whenever she needs. I knew she would, but she said she would talk to Amaya. I'm so thankful that Ms.Gillespie is so kind and cares about Amaya's well being. When I picked up Amaya she said that her teacher talked to her and that after her test she asked for pain medication. I'm so glad Ms. Gillespie talked to Amaya and that Amaya asked for medication when she needed it.  I wonder if there were other days when Amaya needed pain medication but didn't ask for it. Hopefully now she knows that she can always ask for what she needs to be comfortable. 

Limb Connections

   After a bit of whining and moaning Amaya fell asleep and stayed asleep for the entire night last night. That's the first time in weeks! Almost a month actually. Tonight she feel asleep easily. I was rubbing her head and hair and she fell asleep. It's the first time in months that I haven't had to rub her foot or knee to help her fall asleep. I'm not sure if its the long tape that's doing it or something else, but I'm very grateful and happy.
    This morning Amaya decided to take her wheelchair to school because she was a bit tired from all the walking she did yesterday. When I picked her up she told me that she didn't end up using it very much after all. I think she's enjoying walking more. And she knows that it helps strengthen her bone, which means the fixator comes off sooner. And getting it off sooner is a goal of hers.
   This morning I received a call from a woman at Loma Linda asking if Amaya was seen yesterday at her appointment. I said yes, and the woman said that was all she needed to know. As soon as I hung up I got a call from Marilou, our referral coordinator at Beaver. She also asked if Amaya was seen yesterday. I told her that we were and mentioned the other woman's call. I thought this was all a bit strange. Marilou said that they told her we weren't seen and that they didn't have an authorization in place to see Amaya yesterday. Marilou said she gave the woman an earful; explaining how frustrating it has been to make sure forms are sent over and processed, having to resend forms, etc. She wanted to make sure that Amaya was taken care off and seen. Marilou has been wonderful at getting Amaya's referrals processed quickly and efficiently. She usually sends me an email, and faxes over the documentation to make sure all ends are covered. She continually gives Amaya excellent service. We are so thankful and fortunate to have her on our side advocating for Amaya.
    Today Lidie and I ran some errands. It was so much faster with only her. I'm sure any parent will tell you that its faster to run errands with one child opposed to two. But its even harder with Amaya. We have to get a wheelchair in and out of the car, maneuver through people who seem to be blind to us, and deal with any pain or discomfort she may have. If she decides to walk its at a slower pace which takes longer, tires her and makes keeping up with Lidie tricky. I try not to do too much when I have Amaya so that she isn't too worn out. It was nice to be able to catch up on some stuff that needed to be done. When living with a fixator some things get pushed aside, or neglected. I've noticed that since we've had the fixator we do what needs to be done, but don't have much energy or motivation for other stuff. We've neglected some stuff and I'm sure some people as well. But, we're hoping they understand. I guess that's just part of living in survival mode.
   Over the weekend another PossAbilities member told me about a group called The Limb Connections. I wrote an email over the weekend asking about the group and if this was something that Amaya would benefit from or if they could direct me to another group. The president of the group wrote me back yesterday saying that the group would be great for Amaya. She said their are several PFFD children in the group and it would be great for them to meet. The group is only a year old and serves to support children with limb deficiencies or limb loss. It gives families and children a chance to connect, network and offer support. I'm excited for Amaya to meet other kids, and for us to meet other parents. It's always nice having the support and friendship of parents in similar situations. I'm so thankful for the connections and friends that we've been making thru PossAbilities and all the doors that its opening for us. I'll keep you posted with her involvement in the group.
     Thanks again for all your kind encouraging words.
**I was just going to get into bed and saw Amaya's bar on my nightstand. We forgot to lock in her bar tonight. My immediate reaction was "aw,crap." I know Dr.Nelson said it wasn't the biggest deal if we miss a night, but I hate doing that. I guess that makes sense why her knee didn't hurt before bed. Well, hopefully she'll get a good nights rest; she certainly deserves it. Since she started getting homework this week, we've been  trying to get all that done in addition to her nightly routine for bed (removing the gauze, cleaning her pins, showering, putting new gauze on, stretches, taking pain medication, locking bar in, etc.). We'll have to start a bit earlier to get it all done; she's been doing her twenty minutes of reading in bed, then locking in her bar. I'm sure in time we'll get a system and routine down.

Second follow-up after lengthening

   Amaya had more knee pain last night and was pretty tired this morning.  We had to be up early for an eight fifteen therapy session. We had to be up, ready and out the door by seven fifteen. So we're all a bit tired. Melissa put new tape on Amaya's knee. It had come loose in the pool and when I massage her knee at night I loosen it as well. This time Melissa made it come higher up on Amaya's knee to help eliminate some of the knee pain she's been having at night. So far she's sleeping okay, so we'll see.
    We thanked Melissa again for coming to see Amaya's swim lessons yesterday. She said that when she was working out she thought of Amaya. She was bending her leg to over a hundred degrees and said she couldn't wait for Amaya to be able to do that again. It's nice how much Melissa cares and thinks of Amaya. And it'll be exciting to see Amaya regain her range of motion after the fixator comes off.

     After the tape Melissa stretched her knee then had her start on the red scooter.

Then she rode the bi-scooter in the gym to help loosen up her knee before riding the bike.

     Here she is riding the bike while Lidie rides on the scooter. Amaya did the big loop today. On the way back to the gym she offered to pull Melissa on her stool. She tried, but it was tough. But, I like that she gave her self an extra challenge.  

    Back in the room Amaya did some bends, squats and sat into a stretch. Melissa was happy with the stretches Amaya was getting. Then we started bends to try to get her knee to ninety degrees. Mondays are always hard, but such an early morning appointment is extra difficult. I had Amaya wear the ankle weight on the way down to help stretch her knee, but her knee was so stiff when we left home because she hadn't been up very long and didn't have much time to move it yet. Her starting knee measurement was fifty-two, which isn't bad for a Monday. Then she did some bends and was quickly up in the eighties. She complained of knee pain, but we told her that it was going to hurt either way so to just focus and work hard so that it would be over with soon. She focused, pushed through the pain and tears and was able to get her knee to ninety one degrees. 

     After that she went to school and had a great day. She had no pain and walked a lot there.  After school we headed over to Dr. Nelson's for her appointment. As of today its been ten weeks since we stopped lengthening. So we were excited to see how her new bone looked. When we walked in I could tell it was exceptionally busy. It took about fifteen minutes just to check in then another twenty minutes to register for the x-ray then another ten to get the x-ray taken. People were upset because they had been waiting for almost three hours. It was nutty and crowded. I felt bad for all the staff there. As we waited for the x-rays to be taken a nurse let us know that Dr. Nelson was running about four hours behind schedule. He was gone at a conference last week so he was very booked today. They said we could either reschedule or leave and grab something to eat. 

    While we were there we saw Penelope and her parents. She was doing good and it was nice to see her. We also got to talk to another mom who's son had a fixator as well. No one had the same kind that Amaya did, so they asked about hers. They were shocked to know that she has to wear it for about eight to ten months long. Her son only has to wear his for six months so they were a bit relieved that it wasn't as long as Amaya. Each fixator story is a little different. 

    After Amaya took her x-rays we headed across the street to the Children's hospital to eat at the cafeteria. While we were there Amaya asked us about going to medical school (at what age do you go, what comes before it, what comes after it, etc.). It's funny to see her brain plan for the future. We took our time and were back in about an hour and fifteen minutes. As we returned they called Amaya's name.  Even though Amaya had rode in the wheelchair over to the cafeteria she decided to walk in to show Dr. Nelson her walk. This is the first time since her surgery in March that she's gone to an appointment without her wheelchair. Its funny what a different reaction Amaya gets when she's up walking. It's much more positive, exciting and happy. It makes people so happy to see her out walking around. Even at school today many people came over and told her how good she looked walking. She's been doing so much walking lately. 

At her appointment...

     We first saw Dr. Bunnel who explained how they remove the pins. He said that they are like screws, so you unscrew them. He said that after the first turn they come loose pretty easily. He said that for an adult they'd do it while you're awake and have you tough it out, but they'll put Amaya in a sort of twilight state to remove them. He said that her pin sites look great and that we're taking good care of them. He said the blood that she's been draining from her pin sites was normal. He said the x-rays looked good. 

     When Dr. Nelson came in he was pleased with her x-rays. He told Dr. Bunnel that Amaya has done so well. He said that because she was doing such aggressive physical therapy and walking on her leg so much she'll be having her fixator off before the normal allotted time of six months. He said possibly four months. We won't know for sure until we see him again in four weeks. He said she was a "poster child" for this. Dr. Bunnel was surprised to hear all the stuff that Amaya has been doing (swimming, going to the beach, boogie boarding, etc). Dr. Nelson told him he should check out her blog and see all that she's doing.

    We told Dr. Nelson about Amaya's knee pain at night. He said that it was normal, but that it should be getting better soon. 

     Dr. Nelson told us that when the fixator comes off he'll put a rod in her leg. I'm assuming it'll go in next to the femur. He said that if it looks like its not going to stay or if it might be breaking the bone were the pins were then he'll put a cast on instead. He'd rather put the rod in so that Amaya can be more mobile. We're not sure how long she'll wear that for. 

     We got a form filed out so that Amaya can have Tylenol given to her at school if she needs it for pain. 

     We also got a new temporary disabled parking placard. It helps a lot. Especially when Amaya is trying to walk more. That way she can walk in the walkways by the disabled parking spots instead of threw a long crowded parking lot. I've noticed how tricky it is to maneuver the two girls and a shopping cart and a wheelchair without access to disabled parking. 

    Amaya walked out and showed Dr. Nelson how she's walking. 

Here's the x-ray from straight on. You can see how white her bone looks. Dr. Nelson was pleased with the new bone and how its healing. 

Here's a side view of it. You can see the break and the new bone a bit better from this angle. 

Here's a close up of the new bone.

    Thanks again for reading along. It's encouraging to know that others are invested in Amaya's journey and recovery. It's so nice to be a bit closer to the end. We've been looking down a long tunnel and are starting to see the light at the end. We have about two more months of life with a fixator. Can you believe it?! Thanks again for all the prayers, kind words, encouragement, good thoughts, positive energy and love that you give us. Keep sending it our way. We'll be needing it these next two months. And as we adjust to life after a fixator. 

A fun busy weekend

    Our weekend was fun, and busy. We rented a movie, relaxed, cleaned the play room, went to Lake Arrowhead with family from out of town, went to swimming class, went to the Skirball Cultural Center with our good friend Ade, saw Lucky Diaz and the Family Jam band perform, and ate yummy vegetarian food. Below is some video and pictures of the weekend. And we got an email from our "fixator friend," Alison in New York. She had some input, advice and praise for Amaya. Thanks for writing Alison!

The girls relaxing on the dock in Lake Arrowhead. 

The girls got to feed ducks with their cousins. 

Joaquin and Jude loved Amaya's wheelchair! Amaya was nice enough to give them both a ride and let them play with it. 

     Here's some video of Amaya swimming today. She had a new instructor today, Jeremy. He was kind and she got to work one on one with him. He taught her to make big movements with her arms to help her swim. And how cool is Melissa? She came and watched Amaya swim today! She came before her workout time. Amaya was happy to see her and appreciated her effort to come by and say hello. Melissa was impressed to see so many people in the pool; students  (of all ages with varying disabilities) and staff. 

   During the last few minutes of the class Amaya was crying. Her knee was hurting so we decided to let her get out. She said that she had tried bending her left knee as she swam and it got tired and hurt. Her instructor felt bad and worried that maybe he pushed her too hard, but she recovered quickly then went and told him that she was okay. 

     Another neat thing that happened at swim today was that before Amaya got into the water the head instructor looked at Amaya, her leg then said, "that's a cool contraption on your leg." Then smiled. Amaya smiled back and looked happy. What a nice way to acknowledge and react to something that you don't see everyday. I appreciated his kindness, and acceptance. 

This was at the art studio in the museum. Amaya and Lidie made purses from plastic bags. It was up-cycle art; re-using materials. It was so easy! I love Amaya's purse!  Lidie made a purse as well.

Lidie danced her heart out with the band.  While we were there we ran into one of Amaya's old classmate from Pre-K. What a small world!

The girls got to try weaving. They really enjoyed it. 

       Here's some video of the girls inside the Noah's ark display. They climbed through and had fun! I started video taping right as the girls approached a crowded section. Lidie started telling the kids, "that's a fixator and if you hit it its going to hurt her." Basically, protecting her sister. Amaya pushed her way through (nicely of course) and yelled back, "come on Lidie!" It was interesting to see how they each navigated the crowd. A couple of kids looked at the fixator and were very curious. Especially one girl in particular who was about four or five. She was staring at Amaya and following her. Amaya stopped and explained what the fixator was and how it worked then the girl moved on. 

Here's Amaya swinging in the maze. 

    In the Noah's ark display they had a pamphlet that talked about the display. It talked about the universal principles that the arc story teaches us; "it's about surviving the challenges that life throws our way by getting along and working together, and about making the most of second chances." I've never thought of it that way, but I like that perspective. 

  At the end of the Noah's ark exhibit (which is very cool! It has many hands on activities for kids to explore and play with) they asked you to share your story, something about what you did this summer. Amaya immediately thought of what to write. Of all the things that we've done this summer, all the places we've been the thing she picked was, meeting Rory. I thought that was very sweet. 

Here she is busy writing her card. She decided she wanted to keep her card instead of adding it to the display.

     Here's what Amaya wrote; "I met a kid named Rory. She has a short leg like me. She was sweet and playful. I love her." It's short, sweet and to the point.  I decided to make one too. Mine says, "I have watched my daughters soar to new heights." I couldn't be more proud of them. 

A good memory?

    This morning I followed up with Amaya about the photos from yesterday. I asked if she wanted me to delete them from the iPad so that she didn't have to see them, since they bothered her. She said, "no, because when I'm a teenager I might think its a good memory." I can't imagine her looking back on this as a good time or good memory, but definitely a good outcome. I told her that she'll always be able to look back and remember all that she's done and been through. She has much to be proud of! The strength, tenacity, determination, calmness and courage that she's shown will always be there for her to use in life. She has a great spirit and I'm proud to be her mom.

     On the drive to therapy Lidie asked Amaya, "do you love Dr. Nelson?" Amaya replied, "yeah, he's my doctor. And he's helping me get through all this." Lidie added, "And he's going to take off your fixator." Amaya smiled and said, "yeah." I thought that was pretty sweet and I was glad to overhear the conversation. I'm glad that after her surgeries and and all she's been through Amaya realizes that Dr. Nelson is helping her and isn't afraid or nervous when we see him. Truth be told, we all think he's pretty amazing. We're so grateful for all his help and all he's done for Amaya.

    When we got to therapy Amaya decided to walk in and push Lidie in the wheelchair. When we checked in the receptionist, who we know asked how Amaya was doing. I told her she was doing good an started school this week. She said that she sees Amaya riding her bike and working in the adult gym sometimes. She said that Amaya looks good and that its nice to see her walking around. I'm so grateful for such a kind staff who often ask about Amaya and compliment her on how well she's doing. 

Josh took this picture of Amaya last night. Since I was gone she decided to put her gauze on all by herself. Josh said he stepped out of the room to get Lidie's PJ's and when he came back Amaya had already started. He said she was so focused and looked like she was is "doctor mode." She did a good job too!

She showed this to me this morning. It's the list she started of things to do when the fixator comes off (she'll have a few weeks where she can't put any weight on her leg). It says, "go to museum with Diane, rent movies at Redbox, relax at home." Not a bad start, eh?

     Today Melissa had Amaya start on the total gym machine. She said that since her knee was so stiff on Wednesday she wanted her to start there. When she was working on there I told her that Ms.Cajiuat and her both wear the kinesio tape and that Ms.Cajiuat said to tell Amaya that they both "rock" because they wear the same stuff that the Olympians wear. Amaya thought that was pretty cool. Melissa told Amaya that she was like an Olympian, but Amaya said that no Melissa was since she works everyday. After that she walked into the peds gym then rode the bi-scooter down the hall and back twice.

Then Melissa had Amaya sit on that step stool so that her knee would bend. After each time Amaya got to shoot the basketball to try to make a basket. She made pretty much each one!

     Amaya did some lunges and threw bean bag animals each time she lunged forward. All those things that Melissa has Amaya do after a bend or lunge or sitting is a great distraction and reward for Amaya. We're so fortunate to have Melissa as Amaya's primary therapist. Melissa shared with us that she started working with a six year old boy who has two fixators on his hip. She said that he's had them on for a few weeks but Dr. Nelson wasn't happy with the therapy he was receiving at another place so he had him come see Melissa. I'm so glad we haven't had any issues with therapy like that. It's nice that Dr. Nelson and Melissa work so closely together to provide Amaya such excellent care. 

Then Amaya climbed up and down the ladder five times. It seemed like she did a lot today. Some days they do so much in those forty five minutes!

Here's video of the girls riding up the hill. You can see them working hard to get up. 

Here's some video of them going down the hill on their bikes. Amaya asked to do it this second time so that she could use the momentum to keep pedaling back to the gym.

      Melissa did some last minute stretches on her knee before starting bends. Amaya's knee was at fifty degrees but got to sixty easily. She made a goal of ninety-five. We agreed that if she hit ninety five she could rent a movie from Redbox tonight. Then she started her bends. In eight bends she was able to get to eighty-four degrees!  It took a lot of effort to get to ninety. She was in pain so when she hit ninety she stood up a bit and wanted to give up. We encouraged her to keep going and not give up. Its always hard knowing how much to push her and when to let her stop. She started bending again but had lost some degrees and was back in the eighties. She worked to get back to ninety then with a last effort she was able to get ninety-five! She was quite happy, although in some pain. 

     When I took her to school I reminded her that her knee might hurt more since she had therapy before school and to get Tylenol if she needed it. I've scheduled her therapies either early in the morning or in the afternoon so she isn't missing a lot of school. She rode in on her wheelchair since she was tired from therapy but parked it in her classroom and walked in and joined her class on the rug. She had a good day without any pain. I'm very thankful for all the effort her teacher Ms.Gillespie has put in to make sure Amaya has had such a good week at school.

   When she got home she asked me to listen to a crunching sound. She thought it was coming from her fixator. I couldn't hear anything but she said she felt it in her knee. I'm assuming its the same thing we had heard before and that Dr. Nelson said was "normal" for Amaya. But, we'll ask about it on Monday. 

    Tonight she had some bleeding form her top pins. The gauze was stuck and hurt a lot to come off. It ended up ripping a piece of her skin off with the scab and gauze. There's a picture down below. It's kind of yucky so if you don't wanna see it, don't look down. Her middle pins had a lot of drainage and took a few minutes to come off as well. She started to freak out a bit in bed when she saw more blood coming out of her pin. They haven't done that before, so I'm not sure what to make of it. another thing to ask Dr. Nelson on Monday. I cleaned it up and wrapped it up in new gauze quickly. I used twice as much gauze on that pin than normal to give it some extra cushion. Hopefully that doesn't give her any discomfort over night.  

Here are her top pins before I cleaned them and put new gauze on. 

Ten o'clock

     I'm not sure what it is about ten o'clock, but Amaya has been waking up crying at ten every night this week. Tonight she got up out of bed and walked all the way in the hallway crying. I rubbed her knee and she fell asleep pretty quickly. Some nights she goes back to sleep pretty easily, others she'll cry and moan for hours.
    This morning when she woke up she was tired and cranky. I think the poor sleep is catching up with her. Not to mention all the walking she's doing at school and how hard she worked at therapy.  She had a good day at school today. Josh sent me a text in the morning saying that he saw her during recess and she was busy playing with some friends. She said a quick hello then was off to play with her friends some more.  She had P.E. today and really enjoyed that. After school she told Josh that she had some pain on the side of her knee, but didn't think she needed pain medication.
   When Josh and Amaya got home he asked me to ask her about the pictures she saw on the iPad on the way home. When I asked her she showed me some pictures that I had loaded on there to show her classmates before her surgery. I tried talking to her about them, but she was very quiet and said that she didn't' want to talk about it. I kept pressing her, but she kept saying that she didn't want to talk about it. I told her that, that was fine, but that if she wanted to talk to someone she could (us, her teacher, a counselor, etc). She said no, so I gave her some space. When I asked Josh about it he said that in the car she was playing on the iPad then said, "these are giving me nightmares." When he asked what she was talking about she told him about the pictures. When he tried talking to her about it, she said "don't worry I'm not looking at them anymore."

      These are most of the pictures she looked at. There's a couple more showing her with her cast, and two in the hospital right before she headed back to surgery. In one she's giving a peace sign and in the other its a picture of her knee where the doctor marked it for surgery. None of the pictures were gory or gross or showed her in pain. For some reason just seeing them bothered her and made her feel like it was a "nightmare." It's hard to understand what she thinks, feels and how she processes things. She's only six and only time will tell how she feels about them and what she remembers.

    After talking with her I had to leave for a meeting. On the drive down I cried most of the way. And on the way back as well. Even as I'm typing I'm teary eyed. It makes me so sad to think that she has such ill feelings and bad memories of her surgeries. The fact that they've hurt her not only physically, but mentally and emotionally saddens me. I'm at a loss for words. I have such a great deal of pain and sadness. Like Josh said, "the fact that they've stayed with her" is just sad. It wears me down to see her in pain day in and day out, but to know that these memories will stay with her so much longer, just breaks my heart. 

     I'm full on crying now and I wish I had something positive or up-lifting to say, to myself and to other parents on a journey like ours. But, right now I'm at a loss for words. Because sometimes things just hurt, sometimes its just sadness and pain that you feel. And right now is one of those times for me. This whole journey has been incredibly tiring, draining and difficult. This added sadness is just too much to add to my plate right now. 

   Tomorrow will be a new day, I will wipe away my tears and focus on taking care of Amaya and Lidie. For all of you who pray or send positive thoughts our way please continue to do so. We're feeling the effects of six months of life with a fixator. Knowing that we have at least three more months is also tiring, but we'll press on. If we've survived six months I'm sure we can survive three more. 

Hula hoop

     Despite waking up feeling tired Amaya had a great day. When Lidie and I went to pick her up after school we talked to Pattie, the secretary, who told me that she saw Amaya walking around campus twice today without her wheelchair. She said that Amaya looked good. It's nice to get reports, since I have no clue what happens when I'm not around. Ms. Gillespie said that Amaya had another good day and was pain free. This is huge because the last four months of kindergarten Amaya was dealing with pain and trying to get comfortable on a daily basis. It's nice to know that when she's in class she's able to focus on being a first grader and without having to deal with pain or discomfort. Amaya said that she had fun and had a great day. Thankfully all her pain and discomfort are happening at therapy and at home (mostly at night). I'm hoping the pain subsides, but it hasn't yet. When we see Dr. Nelson next week I'm going to ask about the pain in her knee.

     I found this picture of Amaya from the PossAbilities swim party. I like this picture so much. She looks so confident, determined and it reminds me of her 'bring it on, I can handle it' attitude. I wish I had seen a picture like this before her surgery. I remember wondering what the fixator would look like. I wondered,  "how big would it be? How far does it stick out?  etc. There were so many unknowns. Now as I look at it next to her legs it seems so big.  

Lidie and I got to go for a walk around the lake today. It was calm, cool and pleasant. This is the first time we've done it since Amaya's surgery back in March. It was so nice having that one on one time with Lidie to talk, and explore.   

Here's another view. It was so nice to be out so early in the morning. 

Lidie found a hula hoop at therapy. She's never tried one before and after seeing it on Sesame Street she wanted to try. This one was a bit too big for her, but she had fun anyway.

 

While Lidie hula hooped Melissa stretched Amaya's knee. I told her about the pain she had last night so she made sure to massage it and stretch it out.

Then Melissa had her sit while her knee was bent. This sounds so easy, but it hurts Amaya a bit because she's stretching her muscles.

Amaya tried to hula hoop as well. I think she did pretty good considering. I love that she always wants to try things and doesn't let her fixator get in the way. 

Then Melissa had Amaya pull herself forward on a stool by bending her left knee. 

As Amaya worked on knee bends Lidie decided to try some circus tricks. She made us call her Maria and did spins into the ball pit. 

And she balanced on the edge of the ball pit. 

Here she is smiling because she just completed a twist successfully. Amaya asked if she could be in the circus too. She said (in an announcer voice), "I'll be the girl who bends her knee!" Melissa said, "I'd pay to see that!" 

Amaya climbed up and down the ladder five times today. Melissa commented that Amaya's knee seemed stiff today. She said that it wasn't bending as much as she'd like it to.  

Melissa had Amaya lay on her tummy while she bent her knee back. It looks like she's crying, but she wasn't. But, she was in a lot of pain, hence the face she's making. 

Melissa taped Amaya's knee before she started her bends.

     When she started bends we talked about a goal for today. Amaya decided on 96. Her starting measurement was 49, which is okay, but not good and its less than it has been. As soon as Amaya started bending she started crying and saying, "mom." I encouraged her to keep going and to try to get it over with soon. Either way she has to get to 90 and it's going to hurt, so the quicker she does it the better. About a minute and a half into her bends Melissa said, "you're doing good Amaya, you really are." Amaya was in the 80's. Melissa had her do a few more bends. Then Amaya said that she couldn't bend her knee anymore. She was at 90, but we asked her to keep going and to do five more bends. And she did. She was able to get 94 degrees in about three and a half minutes.  Since her knee was a bit stiff Melissa asked us to do some therapy homework (stretches, bends, lunges, squats, etc) over the next few days. 

     I'm so sleepy as I type this tonight, so forgive any typo's. And thank you for reading along.