amaya at lake

amaya at lake

Thursday, January 31, 2013

Hip pain

     On Monday Amaya started complaining of hip pain. It was hard to figure out why it was hurting, what was causing it, and what would help it. I had her do some of the hip stretches that Melissa had taught us before. Amaya said it ached when she did them and wasn't sure if the stretching helped. Tuesday nights he woke up crying in pain. This hasn't happened in awhile. I hate to see Amaya in such pain. I massaged her foot and hip then she fell asleep for the rest of the night. Wednesday she woke up with a stiff and painful leg. She said it hurt to walk, but she still got ready and tried going to school. She asked to take her walker to help her walk (its been stored in a closet for weeks now). But after a tear filled drive Josh brought her back home. She wanted to go to school and "try to tough it out" but we knew that wasn't the best for her or her classmates. When she came back home she asked for some tylenol and a hot pad to help with the pain. She hasn't needed pain medication for months and has a high tolerance for pain so when she asked for it I knew she wasn't feeling well. She used the hot pad throughout the day and took Tylenol once more during the day and again before bed. Last night she slept okay, but again woke up with a lot of pain. The pain worries me so I was so happy that we would be seeing Melissa today so she could give us some input on the pain. 
     This morning we had our consultation with the plastic surgeon. As we were walking in Lidie told Amaya that she didn't want her to have to go in or "have to get cut." I told her that Amaya would be fine and wasn't going to be cut or hurt. She's very protective of Amaya. Its sweet. When we saw the nurse she said Amaya now weighs fifty two pounds (with shoes), which is about five pounds more than when she had her fixator removed. Its nice to see she's gained some weight in three months. She had lost about ten pounds when she had the fixator on. The surgeon was very nice and asked a lot of questions. He had read through Dr. Nelson's reports about the surgeries then asked why we were there. I told him the wound doctor had referred us for some fat atrophy in the heel. He examined her heel and said he did notice a dent. in the heel. He said since she wasn't as sensitive (it didn't bother her or hurt her when he touched it) as she was when she first saw the wound doctor and it was showing signs of healing that we should hold off on surgery. He said surgery opens her up to possible infection and complications. He said that its pretty rare to have a wound that didn't burst, or open then heal on its own. He said it was pretty rare. He said he did see some fat atrophy and the bad thing is that whatever fat is gone is gone for good. He said the fat cells that are there can grow as she gains weight, but they might not fill in the entire space. He said a fat transfer could be an option for her, but we'd have to find a place to get the fat from (she's really skinny). He said that when they do that half of what is put in stays. He said since there are some signs of healing lets hold off on that. He said that as she gets older and gains some weight if its still bothersome we can come in and see about doing something then. He said if its there when she's older and doesn't bother her then we can  leave it alone. So all in all I was pleased with the appointment. But like Josh said, he wishes it didn't happen in the first place and that she didn't have to deal with this long term. 
    After that we had physical therapy. Its our first session this week since we're only coming twice a week now (woo hoo!). We had rescheduled our appointment from Monday, due to snow, to today. I was a bit nervous about how Amaya would do at therapy today with her hip pain and since she hasn't come in five days. Although we're still doing our nightly physical therapy homework.

 I mentioned the hip pain to Melissa and she started checking Amaya's hip and trying different stretches to try to find out what was causing it. 

Here's Lidie sporting her new shinny pants. 
Melissa said it looked like possibly some bursitis in the hip (one more thing for me to google). She said its when the bursa, a small bubble type thing that sits between the tendons and bone gets inflamed. She taught us this stretch and is having us to do it in the morning and before bedtime. She said Amaya isn't fully testing positive for the bursitis, but she suggested the stretch and taping the hip to see if that would help. 
Then Amaya did some leg lifts with the green band then while wearing a 1.5 lb. ankle weight. Its really nice seeing her be able to lift a weight. For awhile she didn't have the strength to do that. 
Then as she jumped on the trampoline Amaya complained of hip pain. Melissa had her come off and had her walk.
Then she had her try to stand on her left leg. Amaya said that hurt as well. Then she asked her to loft her leg out sideways. Amaya lifted it up about a foot then said it hurt too much. This hip pain is so weird. Then Melissa had her walk around the adult gym while holding 2 lb. weighs in each hand. Lidie and I stayed back in the gym while Lidie played. 
Then Amaya walked on the balance beam and bent down to pick up bowling pins she did that five time and did really well with it. After that we did knee bends. I wasn't sure who that would go. Amaya started at 118 degrees. A degree less than last time. She told Melissa she wanted to make 133 her goal for the day. That was pretty ambitious considering her pain and that she hasn't come to therapy in five days, but I don't dare doubt her or nay say. I cheered her on and challenged her to meet her goal. She jumped to 122, then 126 and at this point was in pain and thought of giving up. I reminded her that her friend Caelan is also doing therapy and struggling with knee bends. I told her that he was proud of her for doing so well and that she owed it to him to do her best whatever that would be. She gave another big push and got 130, and just as I thought that was as far as she could go she went a bit further and got 133 degrees! Two degrees higher than last time! Caelan you helped Amaya today! Thanks for reading our blog and know that we're proud of you! Your hard work inspired Amaya to not give up and to try harder. Keep Caelan in your thoughts and prayers he has three more weeks before his fixators come off. 
Before we left Melissa taped Amaya's hip. She's hoping it'll help with the pain. About an hour later Amaya said the hip felt better and her complaining has decreased. She also didn't ask for pain medication or a hot pad the rest of the day so maybe its working.
     After that we had an appointment at the orthotist to pick up the boot her wound doctor ordered (way back in December). This is our third attempt at picking up the boot. Its such a frustrating mess! We went in and they tried to give us the gray boot below. Its "great for fractures." I almost screamed. Amaya doesn't have a fracture, just a bedsore. If she gets a fracture I'll make sure to ask for that one. Ay yay yay. Seriously, how hard is it to get the boot the doctor asked for. The guy told me they don't make the boot the doctor ordered, and that they only make one with the heel cut out for nighttime use not for walking. I showed them the picture of the boot (the black one below) that the wound doctor prescribed. Then they tried to tell me they only come in adult sizes. But the picture clearly says, "pediatric" on there. They left the room a few times to try to find one in the back or in a catalog or calling some manufacturers. Again they tried to suggest that I keep the gray one. I denied it and explained that it wouldn't be doing anything for the heel, which is what we need. They said that you can pump air in this one and it would relieve pressure off the bottom and they could add inserts to the front bottom to help elevate the heel. I asked for the boot the doctor prescribed and didn't budge. Then they happened to find one like it, but in brown that can be shipped over night. Being a mama bear paid off (lets hope). We'll be returning tomorrow to get fitted and pick up the boot. They asked how close we live and I said about an hour away, then they apologized for making us come in so much. I hope this will be taken care of tomorrow because my patience has been exhausted. 
 
See the difference in the heels of the two boots? Only this one allows her heel to be suspended and not have any weight on it and has a sole so she can walk on it.    

Friday, January 25, 2013

Home stretch

     This morning Lidie wanted to stay home, relax and watch television. I didn't blame her. It was cold, and rainy. A perfect day to snuggle up on the couch. But we had an early therapy session so we had to get going. Amaya wore the ankle weight to help her leg stretch and prepare to get 130 degrees today. I also played the Eye of The Tiger for her. We got to Loma Linda with about twenty minutes to spare so I treated the girls to a donut. I figure it was a good pick me up for Lidie and good motivation for Amaya. On our way to therapy I asked Amaya what she was going to shoot for today, 130 or 131. She asked Lidie what she should go for and Lidie said "four cause I'm four." So Amaya changed it to 134. Which is close to Melissa's long term goal of 135. I reminded Amaya to do her best and then we headed in. Amaya gave Melissa the donut Lidie picked out for her. 
Melissa tied a band around Amaya's legs and had her walk side ways several times. Amaya said her legs felt a little bit sore when she did it. 
Then Melissa had Amaya hold two three pound weights while she walked around the perimeter of the adult gym. The weights help keep her arms and shoulders down. Towards the end she was getting tired so Melissa asked Lidie to help cheer her on. Lidie did some jumps, cheers, and dance moves to motivate Amaya. Lidie is a great motivator and distraction at therapy. 
Back in the gym Amaya climbed up and down the ladder then stated some cone work. Melissa had her lean down to set the cones down then lean over to pick them up. This is called the golfers lift because its similar to how golfers bend down to pick up balls. While Amaya did it she leaned in the opposite direction of where she was bending which threw off her balance. Melissa said is a compensation technique to avoid pain, discomfort and putting pressure on the leg. After awhile it becomes habit. Melissa is working on helping Amaya break those habits. 
Melissa helped spot her and support her leg while she leaned in the direction she was leaning. This second set was much better than the first. 
Amaya did thirty side leg lifts. While she did them Melissa told her that if she got at least 130 degrees during her knee bends today we could drop down our therapy to twice a week.  She got 129 degrees yesterday so I knew it was definitely a possibility, but its been such a long awaited thing that I was nervous.
      Amaya walked forward and backward on the balance beam today. Melissa said that she had excellent balance on there today.
      After that Amaya started her knee bends. Her starting number was 119 degrees. That's two degrees higher than yesterday and our highest starting number yet. I asked Melissa if she remembered if Amaya was ever in the 120's or 130's when she started therapy last March. She couldn't remember exact numbers off the top of her head but she did remember that in the early days there were some days were Amaya was able to get to 120's or maybe 130's a couple of times. That was last March nearly eleven months ago. It'd definitely been a long time. I vividly remember all the painful, tear filled therapy sessions we had trying to make it to 90 degrees. Being so close to 130 yesterday and today was pretty surreal for me. Eight weeks ago when we started therapy back up after her fixator was removed we started in the high 90's. So in eight weeks Amaya and Melissa have worked to get her knee to bend an extra forty degrees! This is all pretty amazing. 
       Amaya kept scooting and got her knee closer to her goal. At 129 degrees she was in a lot of pain. I could hear her breathing deeply to help with the pain. I felt so bad for her. She endures so much and works so hard for each degree that she gets. Melissa asked her if she could do a little more to get that last degree. Amaya gave it her all and got two more degrees. She was able to get 131 degrees! Wow!
While Amaya did her knee bends Lidie worked on her one handed push ups. She bought and watched Soul Surfer yesterday and wanted to "do them like Bethany Hamilton does."
     After bends Melissa had her work on the elliptical for three minutes. While she was on there I over heard Melissa congratulate Amaya on a job well done. She told her that she was "getting closer to being completely done. You're doing awesome! You're in the home stretch now." Then added, "now go tell everyone you know that you got 131!" As soon as we walked outside that's what I did. I texted Josh, wrote a post on facebook then texted family. I told the secretaries at Amaya's school, and her teacher. I wanted to shout it out to everyone I saw. 
     Melissa said that there's only a few things Amaya needs to work on then she'll be all done. Wow. All done. The thought of that is kind of crazy. Its quite emotional for me to realize that we're almost done with therapy. We've been going for almost eleven months. Most of the time was Monday through Friday. Not to mention our daily physical therapy at home that we do. I remember how exciting it was to drop down to three days a week. Two days seems almost unreal. I feel like we have so much "free time." Now hopefully Lidie and I can do more of the things we've been postponing. Like dance class, library story times, play groups, play dates, painting at home, and just letting her be four. All the things we've had to put on hold. These are the small  Lidie has had to sacrifice for her sister. This is how she helps. This is definitely a team effort. So we're all sharing in the joy!
I took this picture of the girls outside of therapy. I gave them both high fives and congratulated them on all their hard work and sacrifices. Then Amaya said, "don't forget to give yourself a high five for all the support you give." That made my day.
After school we met a very pregnant Tia Amanda for frozen yogurt. She treated us to help celebrate reaching 131. While we were getting our yogurt the woman who works there talked to Amaya and asked her how she was doing and told her she looked great. Amaya told her we were there to celebrate reaching 131 degrees and dropping down our therapy days. This woman (whom we don't even know by name) knows us since before Amaya's surgery. She is kind and always says hello to the girls. After Amaya got her fixator put on she talked with Amaya and let her know that she had been in a car accident and knew about pain and recovering. She's seen Amaya with and without a fixator, using a wheelchair and walker and was so happy to see Amaya walking in on her own today. Its nice to see the joy in other people's eyes as they recognize all that Amaya has gone through this past year. 

Thursday, January 24, 2013

Plastic surgery appointment

    Yesterday we had our appointment with the plastic surgeon to see what he/she thought about Amaya's heel. Unfortunately the doctor was called into surgery and our appointment was cancelled. I was SO frustrated and upset. I had a long, rambling, complaining mess of a blog post in my head to write but I'll spare you. Instead I'll just give the gist. They called our old number so we didn't get the message in time and ended up leaving the house early and driving forty five minutes to an appointment to be greeted by a rude receptionist. When she tried to reschedule the appointment she asked who referred us there. "Did ortho send you?" she asked. I told her that the wound doctor had referred us. Then she gave me a blank look and said, "we don't do wound care this is plastic surgery." Wow. Talk about testing my patience. I took a deep breathe and explained that yes in fact I knew this was plastic surgery, not wound care. I also explained why the wound care doctor referred us to plastic surgery. Then she informed me that the doctor we were scheduled to see was booked way in advanced. I took more deep breaths. She asked if we wanted to see another surgeon instead. I agreed and got Amaya an appointment for next week. This whole process has been so frustrating. Between waiting (five weeks), calling to follow up on referrals, and then having our appointment canceled and dealing with an ignorant and very unhelpful receptionist. Between that and our appointment with the orthotist the day before to get the boot I can tell you my patience is running thin. Later as I talked to my in laws about it they shared their frustration with the situation. They said that it makes you want to just quit. Trust me I definitely feel like quitting. Sometimes I want to throw a major pity party, other times I want to just bawl, sometimes I want to curse and yell. But I always take a deep breath then try again. I have to. Honestly if this was for me I probably would have given up long ago, but since this is for Amaya I can't. I want to make sure to exhaust all my energy, time, and resources to make sure she has every opportunity and every thing she needs. She's given her all with her therapy, and recovery and I owe it to her to do the same. I just wish others did their best to help Amaya too, it would make my life easier. 

Oops, so much for sparring you my long rambling blog post. 
While we waited in the lobby Lidie made friends with a little girl. It was so cute seeing them talk and whisper while they waited for the appointments to start. Its neat how kids can make friends anywhere. Today Melissa had Amaya start on the elliptical. She said she should do it while she still had lots of energy. Amaya told her she was already tired. She had recess before I picked her up and had been playing with her friends.  She did five minutes and did just short of a quarter mile.
Then we headed into the children's gym. Melissa told Amaya that she saw on the blog that Amaya had been jump roping at school. She said she would have her start with that today. I thought it was pretty neat that Melissa took time out of her own life to read the blog. It just shows you how caring and thoughtful she is. Amaya did pretty well with the jumping. This is the most I've seen her jump, ever. The time she showed me at school she was only able to jump a couple of times, but today she jumped for quite a bit. Melissa only gave her minor suggestions. Mostly to try to lift both legs.
Then Amaya lifted her leg while wearing the 1.5 ankle weighs. She did thirty lifts hen Melissa had her lay on her side and lift her leg sideways. She did that without the wight because she still doesn't have the strength to do it with the added weight. 
Then Amaya practiced stepping off of the trampoline one foot at a time. It doesn't sound very difficult but she's still a bit wobbly and needs the practice.
Then she climbed up and down the ladder five times.
Then we went into the hallway to run. I didn't get to film because I was busy racing against the girls. The girls and Melissa were on one team and I was on the other team (aka the losing team). Amaya did really well! Melissa said, "thats the most even your legs have looked yet." 
     Then we walked into the other gym where Amaya practiced walking up and down stairs without holding the rail and alternating feet. She did pretty good going down but still  has some work to do going up. Wehn she's going up she leans in the opposite direction than the foot she's stepping with and then she has a hard time shifting her weight to lift the other leg. Melissa suggested we work on it at home so we'll add it to our physical therapy homework. I have about ten or so exercises that I rotate nightly. There are four key ones that we do every night and then the rest I switch around depending on what she needs the most help with. 
     Lastly Amaya did her knee bends. Her starting point was 117 again. Which is great! She jumped to 122, then 125 then 127. At that point Amaya asked to stop for the day. But as Melissa was holding her knee at a stretch Amaya did one last little push and got her knee to 129 degrees! That's the highest yet! Melissa's goal for Amaya when we started therapy again, eight weeks ago, was 135 degrees so we're getting close! We have another session tomorrow morning so we'll see where we end the week off at.
      As we were leaving Jeremy, one of the therapists, called out to Amaya saying goodbye and asking how she was doing. I think she gets kind of embarrassed because then the entire gym is looking at her. She smiled and said hello, but was pretty meek. Lidie danced around telling them how she saw "the real Willy Wonka!" Its funny how they both have their own reactions to attention. Its definitely nice to be in a place where the staff treat my girls, both of them, with kindness, respect and acceptance. 

Tuesday, January 22, 2013

Tried to pick up the boot, agian

  This morning we were back to our routines we started the day with another appointment at the orthotics to pick up the boot for Amaya's heel. We've been waiting five weeks for this boot so I was very excited to go and finally get it. Well the orthotist was called to the hospital so we had to have a resident help us. He brought out the boot and I could clearly see this was not going to work. First of all it was toddler size (Amaya wears a size two) and it was gray (the other one was black). I kept my could and let him try it anyway. It dint' fit very well. Then he said this one she couldn't walk in. I told him the one they ordered for her had a sole on the bottom so she could walk on it. This wouldn't work. He double check the back to see if he grabbed the wrong one. Apparently the warehouse sent the wrong one. Why they didn't double check that before having me drive and hour to their office again, I don't know. But, it is definitely irritating! The resident tried to put a black boot on Amaya, that was nothing like the one she needed and way too big. He called the warehouse then said he could have another boot tomorrow, but it would be the kind he just tried on her (not what we need). He said he could modify it with extra foam to try to get it so the heal wouldn't be touching anything. I agreed to return tomorrow, then left. Mostly I was biting my lip. After I calmed down (about five hours later) I called and let them know I wouldn't be returning until they had the boot the doctor ordered, in her size there. I also asked that they rush the order since they made me wait this long already. Man, talk about a frustrating process! 
    After that we had lunch then headed to our physical therapy appointment. While we waited for Melisssa Amaya was anxious to see her, she missed her and was anxious to see her. I updated Melissa on everything that Dr. Nelson said and showed her the x-ray. I mentioned to Melissa that Amaya will be having the internal fixator lengthening later on and she said that the kid she had with it on had such an easier time with it. She said you don't have to worry about scar tissue, pin sites, and they had a much easier time with therapy. She said they were able to keep the range of motion in the knee above 118 degrees. And that they said their pain was at a two most of the time. She said the only thing they had a hard time with was extending the leg straight. She said they didn't have the bar to lock at night (since there's no external parts) so that was tight, but other than that it wasn't that bad. I'm hoping that will be easier for Amaya than this one was. But we've still got a few years before that one. 
    Amaya told her about our trip and brought her some jelly beans. I let Melissa know that Amaya did some therapy homework on her trip and did a lot of walking, climbing, running, playing, jumping, etc. She had some leg pain on the way home from the trip, bud did pretty well considering how long we were in the car. 

Here's the gray boot. See how tiny it is?
Here's what the back of it looks like. That's what we need the back of hers to look like. 
This is the black one they tried on her today and then ordered for her for tomorrow. See the difference in the heel of this one? The one her wound doctor ordered has the heel like the black one.
Amaya started therapy by warming up with some squats. 
Then Melissa had her do leg lifts with a 1.5 weight on her ankle. This is the first time was able to do it  while she wore the weight since her fixator was removed!
The she lifted her leg backwards with the weight as well. 
Then Melissa had her do some jumping. 
Then she did some cone work while standing on her left leg. 
Then we raced in the hall. 
    After some more stretches and work we started knee bends. Amaya's knee was at 117 to start. That's her highest starting point yet! We didn't do any knee bends during our trip so it was surprising to have such a high number after missing eight days of therapy. Since it was so high Amaya and Melissa made 125 todays goal. Amaya quickly jumped to 118 then to 122. At this point she was in pain but asked to do one last push. She got to 126 & 1/2. That was fantastic work! She's really making progress!
   Amaya told Melissa about the triathlon she's going to do in the spring and Melissa told her she'll make sure to come watch her. Amaya was pretty excited! She's going to have quite the cheering section.
On the way out we noticed the roses and lavender had been trimmed, and these white flowers started blooming again. We started coming last March and these were in bloom then. We've been going to therapy for all four seasons now. 

Vacation

   This past week we got to go on our long awaited vacation to Northern California. We knew that last year would not be a year of much traveling for us, although we love to travel. It was too uncomfortable for Amaya's leg and we were short on time with daily physical therapy sessions as well as short on funds with added medical costs. Our friends moved up to Fort Bragg, CA. last year and we have been dying to go up and visit them and explore this new area. 
   We stopped in Sacramento for a couple of days to spend time with my brother in law and his family before making our way up to Fort Bragg. When we finally made it there we were taken back by the beauty, calmness, peace and quiet. We had no cellphone or internet reception at their house and it was nice having moments of uninterrupted quiet. Our days were spent enjoying friends, eating delicious vegetarian and vegan meals, and exploring beautiful areas. Fort Bragg is a beautiful place where the redwood forest meets the ocean. Here are some pictures of our trip. I hope the pictures do it justice. 

Josh and the girls with uncle Cody and cousin Elliott at a bridge over the American River in Sacramento. 
Lidie, cousin Elliott, and Amaya at the Jelly Belly factory in Fairbanks, CA. Several people have asked me where its located. Its between Sacramento and San Francisco off the 80.  
Me and my niece Imaan. Isn't she sweet? 
The kids in front of Candy Heaven in Old Town Sacramento. 
We stopped by a favorite spot in San Franciso. These are the painted ladies. There's a great children park there with a great view. 
Amaya posing. She got several compliments on her shirt. Thats the one Josh made her last year. It says "born this way." Each tiem I hear those song lyrics I tear up. 
Our first morning in Fort Bragg we woke up to deers in the back yard. A mama and her baby. They stayed there for several hours. 
Later that day we went to glass beach. It was beautiful. And amazing. It use to be the cite of the city dump. Later it was closed and several years later the ocean slowly turned the glass into beautiful glass pieces. They're soft, beautiful and feel wonderful.  
THe next day we explored nearby Mendocino. Wow. 
Josh and Amaya by the cliffs and sink hole. 
A family photo at the cliffs. 
Amaya did a lot of rock climbing on the cliffs. She had me nervous and scared, but she was careful and did great.  
The girls and I enjoying the sea. We paused to picnic and got to see some whales migrating down the coast.  
Before we started our way back home we went for a mushroom hunt in our friends backyard (which happens to be in the redwood forest. Amaya loved finding mushrooms. 
This si a fairy ring. THey say that wehn a tree dies trees grow around it and create a ring.  
Some mushrooms growing on the side of a stump. These were really hard and not easy to break. I didn't know mushrooms were so diverse. 
Here's a coral mushroom.  I was amazed by how many different types we found so close to one another.
Here are three tiny mushrooms growing on a leaf. I was taken back by the determination, strength and resilience of mushrooms. 
Here's some of the many that the girls collected. Thankfully our friends knew which were safe to eat and cooked some for us. 
A family photo on our walk through the forest. 
On our way back we drove through San Francisco. 
We continued on in through Half Moon bay where we got more vegetarian treats then headed on to Santa Cruz. 
Lidie kissing Amaya at the Saturn Cafe in Santa Cruz. 
 Before we left we went out to the pier to enjoy the sea, looking and "talking" to the sea lions then headed home.