amaya at lake

amaya at lake

Saturday, September 29, 2012

Front page news

    At therapy yesterday Melissa put new tape on Amaya's knee as we updated her on our appointment with Dr. Nelson. She said that when you get a rush rod put in you're able to weight bear pretty soon, within days. She said that Dr. Nelson will decide how soon Amaya will start physical therapy again. She said he might give her a month off before she starts up again or have her start up pretty soon after the fixator removal. We'll just wait and see.
   After the new tape Melissa bent Amaya's knee sixty times then had her ride the scooter, do some squats on the total gym machine, climb up and down on the ladder, then start bends. Melissa noticed that Amaya's knee wasn't as stiff as it was the day before. Amaya's knee was at forty-eight degrees to start. She worked hard and was able to get up to ninety degrees in just under two minutes.
    At the end of the appointment I went into the scheduling office to try to schedule Amaya's next appointments but the authorization hadn't been processed at that point so I wasn't able to. Ugh, man talk about frustrating. Josh seems to not be as bothered by it all. Maybe its his low key personality. He said its just part of the process and unless I get my MA in hospital administration and do some reform there's not much I can do. That just might be what I have to do, because there definitely needs to be some reform done.  For now I did what I could and made a call into Marilou who later in the day called me letting me know she got the authorization processed. She emailed me a copy of the referral and faxed it over the therapy office so they could process it. Hopefully they will do it on Monday and then I can schedule the next appointments.
   We had another rough night. Its taking Amaya hours to calm down and go to sleep. Ugh, these rough nights are draining. Its one part pain and discomfort, one part tired and one part emotional; whinny and crying from being worn worn out and ready for it all to be over with. Its hard to deal with it. It's at the end of the day and we're all tired and worn out. We know Amaya is in pain, but we know that once she can calm herself she's able to fall a sleep and stay out the rest of the night. Its hard to see her in pain and frustrating because no matter what we try nothing seems to be working. Ugh. Wish us luck. Hopefully this is just a phase and it passes soon.
Lidie was racing Amaya down the hall as Amaya rode the scooter.
Amaya rode into the adult gym to do squats.
Then Amaya and Melissa raced on the stools. 
Later Amaya played dress up with Lidie. She had so much fun and it was fun to see her be so silly.
As Josh and the girls wrestled Amaya decided to slide down Josh, but her fixator scratched his leg. Ouch! We've all been scratched, bumped and bruised by the fixator before, but this is the worst one yet.
My aunt found this picture of Amaya on the front page of the paper, the Chino Champion. Pretty cool, huh? It's from the basketball clinic she participated in last weekend with the Limb Connection. They raised $750 to send the kids to Camp No Limits next summer. 
I looked up the article online at www.championnewspapers.com. I found this and several other photos and the article. I like this shot a lot, its Arelle, Amaya and Joshua stretching. I love seeing the shoe lift, fixator and prosthetics all in line. I hope that as people see the article and pictures they can see past the shoe lift, past the fixator, and past the prosthetics to see kids who work hard and who live life to the fullest. I hope that others are inspired, motivated, and challenged by the strength, courage and resilience of these kids. They are amazing!

Friday, September 28, 2012

The end is near

     Leading up to our appointment Amaya was pretty nervous. The night before she said she was afraid that her fixator would be removed that day. But we reminded it was just a check-up, and that when the fixator will be removed we'll have time to plan for it. After that she was pretty calm.
    As we pulled in dad played a fun song that the girls like and Amaya said "I'm not scared now." I admit even I get a bit nervous each time we go. Its just such an emotional thing, and a bit nerve racking.  I always have to work hard to stay calm. When we checked in it didn't seem as busy as we've seen it in the past. We got there at about nine thirty and were out about eleven. That includes the half hour long that it took to take x-rays. As Amaya was back getting x-rays me and Lidie saw two other people with fixators on. It's funny, when she first had hers on we only saw a few, if any, but now we usually always see at least two others with fixators on. As we sat there a girl came back form x-rays and the family sitting next to us looked at each other, grimaced and said. "Oh my. Can you imagine? Did you see that?! That girls had a pin going all the way through her leg! Ow." I just had to smile. Because I'm sure to someone who hasn't had a fixator it seems so crazy, and strange and painful and sad. We know better.
    As Dr. Nelson was opening the door to come in we heard him talking t the new resident. He said, "she's the poster child for lengthening." That's always nice to hear. He told us that Melissa had emailed him and mentioned her concern with Amaya's stiffness in the knee. He said he wasn't concerned as long as she was able to get to at least ninety degrees. Dr. Nelson said the x-ray looked great and that we could now fill in the paperwork to get her scheduled to have it removed in a few weeks to a month. Wow. He explained to the resident that normally you leave it on for twice as long as it took to lengthen. So in Amaya's case it took three months to get her eight cm, so she would've kept it on for six months after that to let the new bone harden, but since she's done so well and her new bone has solidified so quickly she can have hers removed before then. She'll actually have it about four and a half months after lengthening was done.
    He told us that he'll put a rush rod in to help protect the bone. He said to plan to stay overnight, but if she's feeling good and we're ready she may be able to leave the same day. He said it'll stay in for awhile and come out "when she's under anesthesia for something else." Most likely when she has her surgery to stunt the growth of the right leg.
    Amaya gave Dr. Nelson her card and he appreciated it and was surprised that she is going to be walking in the 5K in a few weeks. He gave her his blessing to walk as much as she wanted then have dad push her in her wheelchair.
   I told D. Nelson that Amaya was a bit nervous about having the fixator removed, that she wondered how they do it, and worried about any pain. He told her that she'll be asleep so she won't feel anything. He let her know that its a lot easier than having the fixator put on, but did let her know that she'll be a bit sore and that she'll have an incision where they put the rush rod in. He also told her that they'll give her good medication to take care of any pain. That really calmed her nerves. I appreciated that he stopped and talked directly with her and answered her questions and calmed her fears. That's what I think makes him a great doctor. In addition to being a skilled surgeon he cares for his patients and treats children with respect. I appreciate that and am so grateful for that. Later in the day we could tell that she was calmer and happier. She mentioned several times that she wasn't scared anymore.
   The plan for now is to continue with therapy (three days a week) until the fixator is removed. We will be receiving a call within the next few days to schedule the removal surgery. Other than that we are thrilled to be nearing the end.
    Last night was also rough. Amaya was in a lot of pain, and lately she seems to have a hard time falling asleep. Once she's asleep she can handle the pain. She didn't fall asleep until about nine thirty. I was up from three to four then at six fifteen. It'll be so nice having some regular sleep again after the fixator comes off. We've adjusted to a new life of normal with a fixator (normal pain, poor sleep, pin care, therapy, etc.) but it'll be nice to be back to our regular normal.
   Thank you all for all the love and positive thoughts. It's nice to know how many of you are as excited to know the fixator will be off soon.
While Amaya was waiting she was drawing and writing her her Diary of a Wimpy kid book. She drew Greg Hefley with a fixator.
Lidie while waiting for Amaya and Josh to get back form x-rays. Apparently the woman who took them back for x-rays wasn't sure how to handle the fixator because it took half an hour for her to get the pictures. Josh said she had Amaya laying and moving in different positions. At one point she even had Amaya hold her leg up high in the air. 
Here's her x-ray. Pretty amazing, huh?
Here's a close up of the new bone.
Here's another one a little bit closer.
Dad and Lidie in the room. Lidie was reading while waiting.
At lunch Amaya drew herself (notice the fixator?) and then started practicing her signature. She tried doing it fast because "that's what doctors do."
Here's a picture from another kids blog that I read before Amaya had her lengthening. This is what his rod looked like after his fixator was removed. So Amaya's might look a little bit different, but at least you can get an idea of what a rush rod looks like.

Thursday, September 27, 2012

Ping pong

    Josh described our nights like a ping pong game. He said the girls play ping pong with me, taking turns calling me to their side. Sometimes its just once, but some nights I go back and forth several times. No wonder why I always feel tired. Amaya has been having rough nights again and spending more time in our bed than in hers. Last night was especially rough. She didn't fall asleep until ten thirty and was up at midnight in tears and needing pain meds. Amaya is still having a tough time locking the bar at night and taking about ten to twenty minutes to lock it in. After that she's been in a lot of pain and having a hard time getting comfortable.
    Yesterday Amaya had a really stiff knee at school and at therapy. She's been complaining that her top pins hurt when she puts pressure on them by sitting down or laying on them. And she said that when she steps and puts her weight on her left leg her knee hurts. At therapy yesterday she told Melissa and showed her where everything was hurting. Melissa thinks it all comes from how Amaya's been walking and sitting; when she turns her leg and knee inward. Melissa said that the hip controls the rotation of the hip, but when Amaya turns her leg inward she's putting too much pressure on her knee and that's what's causing her pain. The bad thing about a stiff knee is that her knee isn't getting the proper amount of fluid in it and it can cause problems for her down the road. We obviously don't want that so we really need to stay on her to keep her leg straight and to do the exercises Melissa gave her to help undo any damage done.
Lidie tried riding the bike that Amaya usually rides. She did pretty good.
Melissa re-taped Amaya's knee as Amaya showed her where her leg has been bothering her.
Here's one of the new stretches Melissa taught Amaya. But as you can see Amaya still had a hard time keeping her legs straight. 
Then Melissa had Amaya lift her leg up as she laid on her side. Amaya said this was a bit tough. Melissa said that was normal because those muscles aren't very strong since she's been relying on other muscles to do the work. 
Here's the last exercise she learned. This one was also tough for Amaya. 
Melissa had Amaya practice walking around the long loop today. Amaya was thinking that she was keeping her leg and feet straight, so I videotaped her so she could see just much she turns them in. She's not even aware of it. 
    Amaya also rode the bike then worked on bends and lunges at therapy. When it was time for bends Amaya had a pretty easy time. Her knee was at fifty-four degrees to start which was great considering how stiff her knee was. She was able to get to ninety degrees in just over a minute. 
    Melissa let me know that someone form Beaver (Amaya's primary clinic) called trying to get Amaya's authorization processed. As of now she's only scheduled until Monday for therapy. Ive been trying to get a new prescription and referral processed for the past two weeks. On Tuesday I was told they were just now processing the prescription. I was so frustrated. It is always such a battle to get them done in a timely manner. And they always seem to be done at the last minute then its difficult to get Amaya scheduled with Melissa and at times that work for us. Ugh. Once again Marilou at Beaver has done an excellent job of helping us get the referrals where they need to be, processed and done just in time for Amaya to get new appointments. 
     Today is a big day. We have our appointment with Dr. Nelson. We're hoping that he'll let us us when Amaya 's fixator will come off. It could be within a month or we might have to wait another month for her new bone to harden. We've almost reached four months since Amaya stopped lengthening (Oct. 4 will be four months). Dr. Nelson had said that it usually takes six months for the new bone to harden, but that it might be as early as four months since Amaya was doing so well. So we'll find out today. Wish us luck. Amaya is very nervous and anxious about it. She's not sure about what to expect, but were hoping that talking with Dr. Nelson will help calm her nerves.

Monday, September 24, 2012

A little nervous

     Today Amaya woke up with some pain in her knee and hip. The knee is usually stiff from being straight all night and then transitions into a bend and then feels better. But today she didn't seem to get any relief so we decided it was best to keep her home from school. With a hot pad and some pain meds she got comfortable, but still had some pain.
   On the ride down to therapy Amaya mentioned that she was nervous about her upcoming doctor appointment and the fixator removal. She's anxious of having another surgery, wonders how they'll take it off, and she said that she didn't like the feeling she had when she woke up from this last surgery. I let her know that they offered her some medication before the surgery to help calm her nerves and to help her forget but she refused to take it this time. She took it before her super knee surgery and didn't have the same reaction as this time (confusion, feeling like she was in a dream, etc.). She said that she'll take it this time so she doesn't have the same feelings when she wakes up. I told her that when we see Dr. Nelson on Thursday we can ask him any questions she has about the removal, etc. She was happy with that then I reminded her about the email our friend Alison sent and all the advice, tips and information she shared with us. That seemed to calm her nerves, but I could still tell she had some anxiety.
   At therapy Amaya showed Melissa where her pain was today, mostly at the top and middle pins. Melissa said there's a tendon running down through there and that's probably where she's feeling her pain at. I asked if the pins go above the tendons or through them and she said through them. Ouch. She showed me where the tendons starts, about the hip and goes down to the knee. She said that during the lengthening its the tendons and the muscles that are stretching.  Melissa had Amaya do thirty knee bends with the yellow band with me while she went to get new tape for Amaya's knee. As she applied the new tape Amaya shared with Melissa about her fun weekend and her upcoming 5K. Melissa was proud of Amaya for signing up and is going to sponsor her. You can go to www.chocwalk.net to read more about the walk and to sponsor her. She's raising money for the children's hospital in Orange County. You can sponsor her online if you look up "sponsor walker" then type in her name "Amaya Jimenez-Potter."
     Amaya started her work by riding the bike up the hill and back down into the adult gym. There she did squats. Back in the children's gym she rode the stool to pull Melissa and then climbed up the ladder.  Then Amaya did some bends and lunges as she threw balls at Savannah Rose (the painting on the wall). When it was time for bends Amaya got to the seventies so quickly, before she even started her bends. And in a minute and eight seconds she got to ninety-two degrees! She did great! She said her pain was low and she felt fine.
     She did fine the rest of the day. Before bedtime it took another painful fifteen minutes to lock her bar in. She was so tired and worn out (so am I) and fell asleep by seven fifteen. At eight she started crying and moaning, then she feel asleep again after half an hour of massages. She's sleeping in our bed tonight, so that I can hopefully get some rest too. It's a lot easier to have her in our bed when she's waking up often and needs me to massage her or comfort her.
We went to a playground yesterday. Here's Josh and Amaya swinging together. 
My daredevil Amaya climbing up the twisted ladder. Almost to the top, she listened to herself, and realized it was a bit tricky, and decided to come down instead. 
My sister-in-law took a picture of us all together.
Josh, our friend Tristin and the girls got to go out on a boat ride, thanks to the generosity of a stranger.  
Here's Melissa showing Amaya a new stretch to help with the pain Amaya has been feeling on her pins and the side of her leg.  She gave us a printout of the exercise to help us know how to do it at home. That way we can reduce Amaya's pain and discomfort.
Amaya doing her knee bends on the total gym machine. 
Melissa has been teasing Amaya that since she rides the bike so fast now she's going to have Amaya pull her. Since she forgot to have Amaya do it today she had her pull her on the stool instead. Amaya thought it was kinda funny, but also hard.

Sunday, September 23, 2012

Finding Nemo

    As part of her birthday celebration Amaya went to go see Finding Nemo in 3D with her friend Mason. Ever since we first watched it we instantly loved it. I, like many other parents whose child has a limb difference like that Nemo has a "lucky fin" just like our children do. When I first heard Nemo's dad talk about his short fin, I smiled and teared up. We started calling Amaya's shorter leg her lucky fin. Somehow it gave it a new perspective, new outlook. My favorite part is when Nemo goes to school for the first time and meets other "kids." One of the fishes asks, "what's wrong with his fin?" Marlin, Nemo's dad tells them that he was born that way and they call it his lucky fin. Then all the other kids start saying what's different about them, one has a short tentacle, one is H2O intolerant, and one says, "I'm obnoxious." I love that line. It makes me smile so much. Because sometimes we meet such rude kids who wonder what's wrong with Amaya, and I just smile inside my head as I recall that line.
    Another thing I love about Finding Nemo is Marlin's determination to find Nemo. He has to overcome his own fears, and swim through the ocean. On his journey he has to rely on others for help, overcome obstacles, trust his instincts, try new things and be brave. This is similar to the journey we parents go through for our children, especially if they have special needs. We find that we have more strength, more energy, more resilience than we thought we did, because we had to. Some how we find it. Our love for our children takes us on a journey we never dreamed of. We come out of it different people; with new friends, new allies.
    And when the days are tough and the journey rough we have Dory's words to guide us, "just keep swimming, just keep swimming, swimming, swimming." We'll get through whatever challenge was there.
    Thank you all for being a part of this journey. Through its rough days, and nights we have your friendship and support. Through the joys and accomplishments we have you cheering us on and through the obstacles we have you rooting us on. Thank you! Your support means the world to us!
Amaya and Mason at the movies watching Finding Nemo.

Amaya's first 5K

  We signed up Amaya for her first 5K! We're all excited! We just heard about the Children's Hospital of Orange County (CHOC) walk a few weeks ago and we debated whether or not to do it. But when I mentioned it to Amaya she loved the idea! She loved that she'd be walking, helping a Children's hospital, 'training"for her triathlon in the spring, and walking through Disneyland. We figured we'd give it a try! We know the 5K might be too much for Amaya to walk so Josh will be pushing her in her wheelchair the remainder of the way.
   We figured raising funds for a children's hospital was a great first walk to start with because we have a strong connection to children hospitals. Although Amaya has had her surgeries at Loma Linda Children's hospital, there is something about all children's hospitals that means a lot to us. We recognize that they are special places for children and their families. After spending hours and days at the hospital we know a little about what the children, their families go through. There is a shared experience with all the other families who enter those doors; we're all looking for help for our children, we're hoping to help our children live happier healthier lives. We all worry, and wonder, and hope, and pray, and rely on the doctors and staff. So if we can help another children's hospital help other families were jumping at the chance! Won't you help us?
 Thank you for your support and I'll keep you posted with her fundraising efforts!

Here's the basic info on the walk

When: Sunday October 14, 2012
Why: To raise funds for Children's Hospital of Orange County to build a new children's tower.
Website: www.chocwalk.net
How to sponsor: visit  the website then click on "sponsor walker" then you can look them up by name "Amaya Jimenez-Potter" to sponsor Amaya or "Josh Potter" to sponsor her dad. Since Amaya can't walk the entire 5K Josh will be pushing her in her wheelchair for the rest of the way. Both need to raise a minimum of $50 each to participate. But, we're hoping to raise more than that.

Basketball with The Limb Connection

  Yesterday we went to our first Limb Connections event. Limb Connections is a support group for families with children with limb deficiencies or limb loss to connect and network. For more information you can email TLCfamilies@gmail.com. Yesterday we met at the Chino High school for a basketball clinic to raise funds to send the kids to summer camp next year at camp no limits. Camp no Limits has camps around the country, but there is one locally here in Big Bear. Camp No Limits is a camp for children and families with limb loss. You can visit their website at www.nolimitsfoundation.org or email at Campnolimits@yahoo.com.
   I can't tell you how comforting it was to have three PFFD children and their families under one roof. Amaya was the oldest, then there was a four year old girl Arele, and a five month old baby Ariana. It was so nice to talk with the families; sharing doctor stories, sharing Amaya's fixator, sharing struggles, and journeys. There is such a comfort in talking with someone who knows exactly what you're feeling and going through. I'm grateful that this group was created and that we've been able to connect with these families.
    Amaya was very nervous, shy and scared at first. She was afraid she would be stared at, but after a few minutes I pointed out to her that nobody was looking at her. She smiled and after that relaxed and had fun. Both girls did excellent. Amaya must have some natural basketball talents because she didn't inherit any skills from me or her dad. Amaya made so many shots and did great at dribbling. Lidie got the hang of it quickly too.
Amaya dribbling and having fun.
At the end of the day Amaya said, "I had so much fun!"

Josh and Amaya talking with coach Sandra and Arelle. Sandra is vice-president of The Limb Connections and helped put on the event. Her daughter Arelle is four years old and has PFFD also. She has a shoe lift similar to Amaya's old one. She'll be having her lengthening next year so we showed them Amaya's. 
Here's everyone who participated. The girls in pink are members of the girls basketball teams there at Chino High school.
Here is Sandra the vice-president, Dr. Le the president who founded The Limb Connections with the members.

Goodbye summer, hello fall

    My absence from the blog should be a big clue to you that Amaya has been having rough nights (which also means that I get rough nights as well). Wednesday night she cried for hours. We put her in our bed so that I could try to get some rest while taking care of her. I woke up after midnight because my hand was hurting. I had fallen asleep while squeezing her knee with my hand (that was the only thing that helped alleviate her pain). My hand never relaxed when I fell asleep, so my hand cramped up. I was nervous to take my hand off her knee because it took so long for her to go to sleep in the first place. Ugh, man that was rough. But after I took my hand off she stayed asleep fro the rest of the night.
   When she woke up Thursday we decided to let her stay home from school because her top pins were still hurting from where she had gotten hit at school the day before. That in addition to her lack of sleep all week, we figured she needed some extra rest. She said that her pain was at a two or three when she stood, but at a five when she sat down and put pressure on it. That was another reason to keep her home from school (we didn't want her to be uncomfortable at school and five is a high pain number for her). She spent the day relaxing; watching movies and playing with Lidie. I noticed several times that she was standing instead of sitting (to eat and to watch TV) and when I asked her about it she said that it hurt to much to sit. She refused pain medication all day, but by night time she said she felt better.
   At bedtime it took fifteen painful minutes to lock her bar in. Toward the end she was very tired, and sore and in pain and had a mini-meltdown. She started crying and saying that she wished she could have her fixator off, asked why she had to have it on in the first place, and said she didn't like it.  could tell she was tired, so I tried to comfort her and get her to sleep as soon as possible. She cried and said that at P.E. she couldn't do something that the other kids did and she felt bad. I asked her how many kids were wearing fixators at P.E. She said only her. then I asked her if it was fair to compare what she can do with a fixator on with what others can do without a fixator. She said no. So I told her that wasn't fair. And that what she does with a fixator is very impressive and she has a lot to be proud of. I listed all  other qualities and accomplishments and told her how proud of her I was. I don't think she realizes how amazing she is.
    She fell asleep about thirty minutes later as I massaged her foot. She woke up at ten thirty but fell asleep quickly. She woke up again at three thirty and was up for almost an hour. Lidie also woke up at three and at six so my sleep was not great that night.
    Friday morning Amaya had therapy before school. Melissa put new tape on her knee to get her through the weekend. Her tape isn't lasting very much now because when she's in pain at night she moves her body so much to try to get comfortable that her right foot pushes on her knee and peels the tape off.  Amaya asked if they could measure her knee before starting her workout. It was at forty-three degrees, which is pretty good. Lidie had a meltdown at therapy today. Its always hard disciplining a child in public, but somehow it seems worse at therapy. It's never easy, but thankfully Amaya can be pretty independent and work with Melissa on her own. Her knee was at fifty-four degrees before she started her bends. That means she gained eleven degrees as she worked. Not bad for forty-five minutes. She worked hard and wanted to get to ninety within a minute again, but it took a minute and eleven seconds. That's still an excellent time! And she was able to get up to ninety-two degrees, her highest number this week.
   That night it took twenty minutes to lock her bar in. Her leg muscles are still tight and are trying to catch up to her bone growth. A friend asked about it and I explained that even though Amaya grew 3.1 inches of new bone in three months it will take over a year for her muscles to catch up to that. I massaged her leg until nine thirty. She fell asleep but was still uncomfortable, crying, moaning, and couldn't rest. Then she was up from eleven thirty until midnight. From then on the night was rough. I would get up, massage her foot or knee for about an hour then I would wake up because I had fallen asleep in her bed and I was very uncomfortable. This cycle repeated about three times until Lidie woke up at six am. I was so incredibly exhausted. After a rough week of poor sleep this put me into delirium. Yesterday I napped for two hours and was in bed by ten so I actually feel rested today. I had Amaya sleep in our bed last night in case she had a rough night again. Which thankfully she didn't.
   Thanks again for all of your love, care, concern, and friendship. After a tough week (on so many levels) its nice having a strong support system.
Amaya started the day by working on the train. She rode it down the hall and up the hill and back. She did great.
Amaya did some bends and lunges while throwing balls. Then climbed up and down the ladder.
Lidie jumped on the trampoline while Amaya raced Melissa across the room. Amaya pulled herself by bending her knee. Melissa noticed that Amaya was turning her foot inward.  I told her that she's been doing that at night while she stretches her leg to lock her bar in. 
Melissa pushing Amaya around the room for fun and to strengthen her muscles.
Celebrating the last day of summer with some ice cream with Tia Amanda. After ice cream we went to the park with Amanda. I can't believe we've gone through another season with a fixator. We started in spring, all of summer and now are in fall. Wow. 
Amaya tried climbing up this climbing wall. She always looks for a challenge.
I love this shot. Just playing in the evening.

Wednesday, September 19, 2012

Duck, duck, goose

   After a great birthday Amaya had one of the worst nights she's had in a long time. She was moaning and crying from about eleven p.m. to one a.m. She was crying and gnashing her teeth, couldn't get comfortable, tossing and turning. It was so sad to see her in so much pain. I took turns massaging her knee and foot, gave her her next dose of Tylenol at midnight, which helped. I kept massaging her knee throughout the night. Sometimes just hugging her knee with my hand helps. In fact I'm doing it right now. I'm typing with my left hand and holding onto the right one. She's having a rough time sleeping but she's finally getting comfortable. She slept in our bed Monday night and she's back in here tonight.
     Tuesday she woke up fine and went to school but was tired and sluggish. At therapy her muscles were tight, both to straighten and to bend. Usually its just one or the other. Melissa put new tape on her knee to help with the pain at night (but last night as she tossed and turned she peeled off the top layer). Melissa gave her extra time to do her bends since her knee was so stiff. Her knee was at fifty degrees to start, which is pretty good after a three day weekend. Amaya said, "let's do this!" then pushed hard. She got to ninety-one degrees in a minute forty-four. That was awesome! She said it didn't hurt too bad.
     Last night was a bit better. She fell asleep by eight p.m. but was up at nine in pain. After ten she fell asleep and stayed out for the rest of the night. I was so tired and fell asleep about that time too. I'm still a bit tired so forgive any typos.
    Today she went to school and at two thirty Josh called me saying that Amaya was hurt. He was at the other school site he services, but his co-worker called him. Amaya got hit on the pins during recess. She was playing with her friends. During a game of duck, duck, goose the "goose" ran and slid into his spot, and accidentally hit Amaya's top pins head on. A friend helped her walk to try to get Josh. His co-worker let him know she was upset, and her pins were bleeding. He talked or her and said she was pretty upset. I was about to leave to get her for therapy anyway so I grabbed Lidie and headed out the door. When Josh called my reactions were a mix of panic, sadness, upset, a bit sympathetic, and stressed. I can't explain how intense that minute was. As I was getting ready to leave Josh sent me a text to drive safe and to bring extra gauze. Ugh. I tried so hard to stay calm. Since it would take me half an hour to get there Josh left his school and went over to Amaya. They gave her Tylenol while she waited then he looked at her pins and although they had blood, they had stopped bleeding. She was scared that her pins might have gotten loose, but Dr. Nelson said that she'd have to hit them pretty hard for that to happen. On the drive down Lidie said she hates when Amaya's friends hurt her and that she hopes her pins were okay. She's very protective of Amaya. She said, "those kids are being too rough. I don't like people hurting Amaya's pins!" Amaya walked to her class with Josh to get her stuff and let her friends know that she was okay.
     By the time I got to her school she was calm but still had tears across her cheeks. It was so sad to see. We headed to therapy and knew Melissa could look at the pins and let us know if they looked okay. Melissa looked at her pins then had her walk and said she looked okay. Amaya said her pain was at a two or three which is pretty good, considering.
    Melissa had her do a regular days work of therapy: sit to stand, climbed up the ladder five times, rode the scooter down the hall, pulled herself on the red scooter, rode the bike, worked in the parallel bars then did some stretches before her big bends. When it was time for her bends she had a great attitude. Her knee was at fifty-three degrees to start and within seconds she was inn the eighties. She got to ninety-one degrees in only forty-two seconds! That's her fastest time yet!
Melissa stretching Amaya's knee on Tuesday. 
Amaya doing knee bends on the total gym machine yesterday. Melissa had her bend her knee and then extend the leg. 
I found this note on our refrigerator yesterday, pretty cute huh? 
Look what I saw outside of the school library! 
Melissa was teasing Amaya that she's going to have to start pulling her behind the bike because she's going so fast now.
After riding the bike she went to the adult gym and worked on the parallel bars. Melissa had her lunge to set the cones up, then step over them, then bend to pick them up. She was being silly in this video trying to skip a cone as she did it. On the way back to the kids gym a therapist, Jeremy noticed Amaya's top teeth were gone. He asked her about it. It was funny because I felt like when you see family that you don't always see then they do and they notice how you're growing up. Thats' how the therapist's are. Amaya started going there at five years old and now has been going for over six months straight. They're all a part of her life. They're watching her grow up. 
Here's what her top pins looked like tonight after her shower. The top two still have a little bit of dried blood on them, but look okay otherwise. During her shower the gauze was stuck on the top pin and was pretty painful to remove. But she stayed calm and composed. She said her pain was till at a two or three, but that it mostly hurts when she sits because its putting pressure on the top pins. When she stands it isn't hurting her as much. Depending on how she feels in the morning we'll keep her home.
Tonight we had a rough time locking her bar in. I felt so bad for her and just wanted to give her a break after a rough week and day, but since her knee was hard to straighten I knew that not locking the bar in would only make it worse.  She has to get her leg completely straight, where its stretching all the muscles under her leg to lock the bar in. 
Here's a top view about twenty minutes later. After twenty minutes of painful stretches she still had a small ways to go before the bar reached the other bar to lock it in place. It took another very painful minutes to get there. Ugh, man. Some times I wonder how much more I can take. Seeing her in pain is torturous. But, she's so sweet and as I tucked her in to bed and was massaging her knee she said it was okay that I had to hurt her to lock the bar in. She''s starting to look forward to the day when her fixator will come off, so are we!

Monday, September 17, 2012

Seventh birthday

      Today is Amaya's seventh birthday. We have so much to celebrate! She has grown into a kind, compassionate, strong, caring, loving, intelligent, persevering girl.  When she was born I was so overwhelmed I couldn't even cry. I held her and took in all her beauty and power. By her first birthday she had overcome challenges and surprised us by crawling and walking with and without her shoe lift! She taught us that her leg would never limit her. She gave us a glimpse into her determined, goal setting, hard working, amazing self! At two she had grown so much! We enjoyed her funny personality, saw her be empathetic to others and kind. At three she became a big sister. She grew up a lot that year and learned to put Lidie's needs before her. We saw her creativity and silliness blossom as well. At four her preschool teachers described her as a "peace maker." She taught us how to face stares, questions and ignorance. At five she had her first surgery and met it face on. She impressed us all by handling it so well! She started kindergarten where she made friends and learned to read! She was growing in so many areas and it was neat to see. At six she showed us how empathetic, helpful, kind, smart, and determined she could be. She decided to be an orthopedic surgeon, and handled her lengthening with courage, grace, strength and endurance. She has been an inspiration to many and made us proud time and time again. 
    As she starts her seventh year I anxiously await to see what the next year will bring. As her fixator is removed, as she walks her first 5K, participates in her first triathlon, and continues to meet and exceed challenges at therapy. I know that she will continue to thrive, blossom and grow! I am proud to be her mama.
     This year we decided to skip a birthday or a big celebration. Although we have a lot to celebrate, we didn't have it in us to plan a big party. And with a fixator on it was hard to think of something to do without risking her getting bumped or hurt. We talked with her and made plans of all the things she wanted to do.
   Last week she started the celebration with a play date with her best friend Mason. On Thursday Josh took the girls to Chuck E. Cheese for some fun.  On Friday her birthday weekend started by some shopping and dinner with her grandparents. On Saturday we had a jam packed day of fun! I made her some zucchini bread then headed off to Los Angeles. We started the day off in Hollywood where the girls looked at and waved and took pictures with the celebrity look-a-like's.  Then we headed to the LA Zoo. Amaya wanted to see the lions so we ventured to see them and enjoyed the animals along the way. A stop in the reptile house was a treat for both girls! From there we headed to the Grove to eat vegetarian food, buy some dessert from a favorite bakery, then had to stop in at Dylan's candy shop. It's the same one that we had visited in New York with Auntie Gwen two years ago. The girls filed a bag each with tasty treats. On Sunday we met her other grandparents, aunt and baby cousin for lunch. It was a fun filled weekend!
   Today she woke up to decorations hung in her room, up and down the hall and all over the living room. There where blue and teal streamers and balloons up everywhere. She had a stack of birthday pancakes and hot chocolate for breakfast. After blowing out a candle she opened gifts and we took some  photos of her. Josh took her to school then later went back so that together they could read a book, Psst! to her class. She shared Mexican sweet bread with her friends and after school she saw Finding Nemo with her friend Mason. She had veggie hot dogs for dinner (her choice) and homemade strawberry cake.
   I spared Amaya some of the fixator stuff for her birthday. I made sure she had no therapy or doctor appointments. But I couldn't spare her from her shower, gauze changing, or locking the bar. The bar was tough. She asked if we could skip it as a birthday gift, but I knew we couldn't since it was so tight. I took twenty-five long, painful minutes to get it in. She fell asleep pretty easily and has been out since so hopefully she'll have a good night's rest tonight. Before she fell asleep she asked to sleep in our bed then said, "Mom, dad. If you two didn't do the things you do to help me, I wouldn't be so close to getting my fixator off. So thank you." And that just shows you what kind of a girl we have, amazing!
At Chuck E. Cheese Josh took this photo as Amaya explained to these girls what her fixator was.
In Hollywood we got to see my old friend Cara (she's not old, but I've known her since she was Amaya's age). I haven't seen in over fifteen years. It was so nice to introduce her to my family and spend a few moments with her. 
The girls posing with Alice and Tinker Bell in Hollywood.
Family photo just before we got in the zoo. 
Lidie with a smile that they were giving away by the front gate. 
Here's the one Amaya picked. 
Here's me and Lidie at the zoo looking at giraffes. 
Josh carried Amaya on his shoulders for most of the way since we didn't bring her wheelchair. 
The girls with my parents after lunch on Sunday.
Here's the birthday girl this morning. Josh took this with her polaroid. 
After school she practiced with her birthday gift. She really wanted a bow and arrow set. 
Here she is with her buddy Mason at the movies.
Blowing out her birthday candle.