amaya at lake

amaya at lake

Monday, April 30, 2012

Fourth follow up

      This morning I realized that it was our fiftieth day of turns! It was exciting to think that we've survived, endured and made it this far! When I wonder how I can get thru a moment, or day or the next month I focus on all that we have endured thus far; and it gives me the strength I need to press on. It's hard to believe its been eight weeks since the surgery. We're starting to feel the strain, but excited that we can see the end (of the lengthening part of this journey).    
      Physical therapy was hard today; on both of us. It's a different kind of pain, but we both feel it. Amaya's is obvious, because it hurts her body, but for me it hurts because she's my daughter. Watching her in pain, is tough and painful. Today was especially hard for me. Amaya has a high tolerance for pain and doesn't usually cry or whine for others (doctors, therapists, etc), but when she did her bends today (and the past couple of days) she started crying. Not just a small whimper, but the "ugly cry" as Oprah calls it, where you have tears and snot dripping down your face. Seeing her like that is very tough, and makes me cry. I try so hard not to cry at our appointments, or in front of her, but man its tough! It was extra hard because I know that we're entering the hardest part of the lengthening, and that she will continue to have pain until its all done. 
    Now it wasn't all terrible; she had fun as well. She practiced throwing balls into the ball pit, got into the ball pit (so did Melissa). Amaya told Melissa that the skin by her pins hurts sometimes, and Melissa suggested that when we give her a shower and take the gauze off that we push the skin down. She said it will probably hurt, but then feel better during the day, because it won't be pulling on it. We got home late tonight so we didn't do it today, but I'll do it tomorrow. During the knee bends they tried to distract Amaya by having her think of puppy names. She thought of nine, but you could tell she was distracted because one was "super glue." Kim pushed Amaya's knee and held it to a count of fifty. I got tissues and wiped her nose and tears away (and swallowed my pain). For the next one they asked Amaya to count down from thirty, but as Kim started pushing on Amaya's leg, she asked,"what's before thirty?" Melissa told her, then she kept going. The pain, distracts her from her thoughts as much as her thoughts distract her from the pain. She was only able to get her knee bent to ninety five degrees today, which isn't great, but it isn't terrible either. Melissa said that we'll probably start seeing numbers in the nineties, but it may get higher by Thursday or Friday. But, she was happy that Amaya was able to stay in such high numbers for as long as she has. Melissa also suggested that I push Amaya's kneecap toward her toes at night, to stretch the patella. She's going to try taping the knee tomorrow. Today she only put on a small piece of tape on Amaya's arm to see if Amaya was allergic to it. Melissa asked Amaya if she wants to do the bends first tomorrow and then move on to the other stuff. Amaya said yes, so hopefully the change in routine will be nice for her. It seems like it would be difficult to be in Kim and Melissa's shoes, to be pushing Amaya as they do. I told Melissa that its so hard to watch, she said that it must be tough on a mother. It is, but I imagine its also tough on them; no one likes to see another person suffer. I just keep telling myself, that it's "pain with a purpose." My sweet Amaya continues to endure, and thrive.
     After therapy we had about an hour before our appointment with Dr.Nelson. I took the girls down the street for some frozen yogurt. We had about an hour wait before we got back into a room (another mix up with the x-ray). When the assisting surgeon came in (I think his name is Allen, but Dr.Nelson called him Juan, which made us all smile), he asked if we would mind if he shared our blog with other families. I said, "Of course not." I learned so much by reading other blogs and I hope that ours can help others as well. This is not an easy journey, so if we can help lighten the load for another family, we're more than happy to do so. I keep telling Josh that they should have a parent to help and guide you. Almost like a referral service where parents can volunteer to help other families who will be going thru what you are going thru (I guess that's what I really want this blog to do for other families; help make their journey less difficult, less confusing, less isolating). 
    Allen looked at Amayas x-ray and said that her hip looked really good. He said that if one of us had a hip osteotomy we'd be in bad shape, but that kids do well with it. It's true, even though she does complain of discomfort and pain, all in all she does really well. We told him that Amaya's bed sore was starting to bother her again. He said the best thing to do was to keep the pressure off of it (so when she's sitting or laying down, we have it propped up). Allen went to go get a ruler and when he returned Dr.Nelson was with him. He measured the x-ray and it showed that she had gained 42.1 mm. The rod showed 52 mm (about 2.04 inches). He said that the measurement on the rod is more reliable because the one on the x-ray depends on how far the picture is taken. Dr.Nelson said that Amaya's hip had healed nicely and that she could start walking without her walker. He said that we only had about one more month of lengthening to go. Amaya smiled so big when she heard that. Even though a month can be long, its nice to have an end point in sight. He said that we can continue to do four turns a day. He was quite happy with the new bone that has grown, the pins and how well she's doing. We mentioned how rough our nights have been and he said that after two weeks and then up until close to the end of lengthening is the easiest part. The closer we get to the end, the more difficult it can be. He also said that each person tolerates and responds to it differently and that it also comes in phases. Part of me wants a quick fix (a pill, or something to make her pain go away), but I know that isn't' possible. Sometimes, just voicing our concerns and knowing that its "normal" is comforting. If he's not concerned, then we don't have a reason to be either. Dr.Nelson had a smile on his face that we all felt. It was undeniable how happy he was with her progress. And that's always a good sign. 
    Dr.Nelson said that he'll be checking the blog for videos of Amaya walking and suggested to Allen that he read it too. I think its pretty neat that they take time out of their busy schedules to read it at all. We're so fortunate to have such wonderful people caring for Amaya. Her doctors and therapists, nurses, and all the behind the scene people who help so much. Before we left I asked Dr.Nelson if the girls could have some gloves to use when they play doctor at home (Amaya had reminded me several times that she needed more "doctor" gloves). He gave us a small pile (the girls were so happy!). Amaya put hers on before we left the office. And Lidie asked me on the way out, "mom, are those my real doctor gloves too?" I smiled and said, "yes." On the way out Amaya smiled and waved goodbye to Dr.Nelson. We'll be back in three weeks for our next check up. 
    It was such an eventful day and I'm worn out. I'm still tired from last night's lack of sleep. The good thing is that Amaya has been asleep for almost two hours now and has been sleeping soundly. 
       
Amaya throwing balls into the ball pit. They had her try throwing while balancing on one foot, like a flamingo, then by stepping (like when you throw a baseball). She had really good balance and strength during both.

Melissa jumped into the ball pit, and made Amaya's day. I almost didn't put the picture in, but it made Amaya smile so much I couldn't resist. Hopefully Melissa doesn't mind too much. She's such a good sport and makes therapy not only bearable, but enjoyable for Amaya

Kim helped Amaya balance as she tried to kick the balls in the ball pit. She kept trying to just use her right leg, but they reminded her to kick with the left one instead. 

Then finally Amaya got in the ball pit. It's her first time with her fixator on, and she had lots of fun. 

Here's the x-ray from today. You can barely see the area in the hip where Dr.Nelson worked on it. Dr.Nelson said the pins all look really good, and the new bone looks good as well. I can't believe her bone is so long.

Here's a close up of the new bone (the gray area between the break). It's pretty amazing to look at. Amaya said "oh golly! That's really cool how much it's grown." Then asked where her new muscles were, but I told her that those don't show up on x-rays the same way that bones do. But, we can't forget that those have grown too!

So exciting and so sad

     We had a great weekend. It was the busiest one we've had since the surgery. Amaya had several things she wanted to do, so we decided to do them all (keeping busy is a good distraction from the pain). On Saturday we went to Cici's pizza (she's been craving their mac n cheese pizza for weeks) then went to the mall so that she could cash in her gift certificate to Build-A-Bear that her friends gave her at her love party. She's been wanting to go there for quite awhile to make a friend. When we were walking in the mall I overheard a teenager tell his friends, "Hey look, there's someone who's paralyzed." I looked over because I couldn't believe he would say something like that so loudly, but then I realized that he was pointing at Amaya. She had heard him too and asked what he said. I told her that he thought that she was paralyzed. Then she said, "Not everyone in a wheelchair is paralyzed, doesn't he know that?" "Apparently not." I said. It's nice to know that my six year old has more sense, than that teenage boy did. It's sad how much ignorance is out there in the world. Hopefully Amaya and Lidie can teach others throughout their lifetimes.  By the time we got home the girls were exhausted. Lidie fell asleep quickly, but no matter how tired Amaya was she just couldnt' sleep well. It was so sad to see her moan and cry in her sleep. Josh woke up with her at one then three then again at five thirty. He got up with her the last time and let me sleep in until seven thirty. It wasn't that late, but it felt so long (when you aren't getting good sleep, even an hour or two seems like a lot).
     On Sunday we rested in the morning then went to my aunt's house to celebrate her birthday. Josh stayed home because he was so tired from being up the past two nights with Amaya and he wanted to rest before heading back to work. It's getting to be the end of the school year for him and he has a lot of IEP's to take care of as well as state testing. Before we left we did Amaya's physical therapy. We did a massage, stretches, she walked (this is the first time she did a two finger touch walk with me, then she walked all by herself! Her steps were smooth and strong, and not wobbly.), rode the scooter, then rode the bike. I was so impressed with how well she did. I was so happy and excited by her improvements in just two weeks since she's been fully weight bearing. The last thing we did was knee bends. Ugh! These were tough! Amaya pushed her leg back for the first two bends then had me do the rest. Pushing her leg back, and causing her pain was so difficult.  I could barely get thru the counts without crying. It just about broke my heart to hear her in pain, and to know that I couldn't stop it. We held each bend to a count of thirty. Me and the girls went and had a good time. Amaya walked into my aunt's house with her walker and made my aunt cry. She said, "That's the best gift I've gotten, to see you walk." It's always nice to see people's genuine surprise, and pride when they see Amaya do things they didnt' think possible, like walking on two level feet! The girls had a great time hanging out with family that they hadn't seen in a few months. Tia Amanda said she overheard Amaya explaining to a family friend why she had her fixator and how it worked. Amanda was impressed with how well Amaya understood and explained everything. Amaya also showed her aunts her fixator and how much its moved since we started lengthening. There's a picture below; its pretty neat to see.
    The girls fell asleep on the ride home, but when we got home Amaya woke up in pain. We had to wash her pin sites and change her gauze (sometimes I wish we could just skip it, but I know better so we don't). I would hate for her to get an infection. Amaya ended up staying awake until nine thirty then had a rough night (which meant Josh and I had a rough night as well). She cried several times throughout the night, and couldn't get settled. Eventually she slept, but woke up at six thirty this morning.

Amaya wanted to see if she fit on dad's shoulders with her fixator, she did!

Me and Lidie cuddling while Amaya made her friend at Build-A-Bear. 

This is who Amaya picked. She named her Rosie.

Here's another shot showing her standing so well on her own. Her balance is really improving. 

Amaya walking around the house during our physical therapy session. She did so well. 
I was so excited, happy and proud of her!

Amaya riding Lidie's bike during physical therapy. 
This is the most she's ridden at home since she started weight bearing. This bike is higher than the one at physical therapy, so her leg has to bend a bit more (and work harder).


Amaya playing with Lidie and Tia Amanda.

The girls had so much fun laughing, and being silly. All they needed was a sheet and open space and they were entertained for quite awhile, thanks to Tia Amanda.

Here's the bar on Amaya's fixator. We put a ruler next to it to see how much the bar had moved. You can see on the bar a small black dot (near the 5cm and 2in. mark). Dr.Nelson put that there as a visual to show how much the rod has moved. It's pretty impressive! So according to our ruler the bar has moved 5cm, 2in. which means that Amaya has gained that much new bone! We'll know for sure when she gets her new x-rays today.

 

Saturday, April 28, 2012

Some things get easier, while others are getting more difficult

    After my post last night I felt like I was focusing on just the difficult things. Although bed time and physical therapy are getting more difficult for Amaya and us there are some things that are easier. It's important to look at both things, keep some perspective and keep a positive attitude. Bath time, and gauze changing is much easier now. In fact Amaya helps me remove the gauze every nigth. She's no longer bothered by looking at her pins and is very cooperative when I put the new gauze on. Its funny to think back on those first days and weeks when she didn't want to look at her fixator let alone at the pin sites. She was afraid to touch it or have us touch it. Now she grabs onto it to lift her leg, and allows us to do it as well. And her leg isn't as sensitive when her fixator gets bumped. Her nightmares have stopped and she's no longer worried or confused (for awhile she kept saying that she thought this was all a dream, that she thought she hadn't had her surgery and would have to have another one). Lidie is also doing a lot better; she's not as anxious about us leaving or worrying that Amaya would be gone in the hospital again. I'm more comfortable with my new "jobs." We've all adjusted to our new "normal" and although we still have some tough, intense moments we're learning how to deal with them. We have a lot to be thankful for; our good health, the love and support of family, the excellent care that Amaya receives from her doctor and physical therapists, how well Amaya is doing, Amaya's pain is manageable, that she hasn't had any complications, and our health insurance (we just got our statement from the hospital for Amaya's surgery and hospitalization, it's just under $100,000. But, thankfully all we had to pay was our insurance co-pay).  So even as some things are getting more difficult, I know that they won't always be that way.

     These are Amaya's bottom pins, this is what she wanted to show her friends yesterday. But, in the morning she said her pins were itchy and asked me to wrap them in gauze. She said the gauze made them feel better. It probably worked out for the best, I'm not sure a class full of kindergartners would have been ready to see them just yet. 

     Josh passed this car on the way to our therapy appointment. He said that after our morning (the girls were fussing then Amaya threw a fit, but then they pulled it together), it was a good reminder. He said that it reminded him of our blog "Amaya's journey with PFFD," and that it's important for us to "enjoy your journey."  We do our best to enjoy it, with all its ups and downs. What I'm really proud of is that there is always an "up" to follow a "down." 
     Amaya had another great day at therapy. When we got there I told Melissa that Amaya was excited to start running. Melissa said that it'll probably be awhile, since she still has a high risk of tripping and falling. Kim did her massages and stretches with Amaya then we started some work in the adult gym (the pictures below show and describe what we did). When they were doing the knee bends and stretches with Amaya they suggested that we massage her scar tissue on the side of her thigh (right above her middle set of pins). They said that the scar tissue forms in kind of a random way, but when you massage it, the tissues can be shaped and allow for better stretching. The scars attach to the bottom muscles and can be painful during the lengthening. Melissa gave me another quick anatomy lesson to help me understand what was going on. Often I wish I had a refresher course to prepare me for this process. With a focus on; nursing, anatomy, massage therapy, physical therapy, wound care, etc. It would be so helpful! I'm so thankful for the patience and constant teaching that I receive from Melissa and Kim. During the stretches Melissa and Kim did a good job distracting Amaya (asking her to name pizza toppings and things that start with the letter p). They did their best, but Amaya still ended up in tears. Dad got to rub her back and hold her hand during the stretches. After all the pain she was able to get 101! I told Melissa that I was so surprised that here we were heading into our eight week post surgery (and seventh of lengthening) but Amaya was still able to get her knee in the hundreds. Melissa agreed and said that Amaya was doing great. Another thing to be thankful for. 

Amaya walking with Kim out to the adult gym to use some new equipment.

     Amaya used this last year after her super knee surgery, but hasn't used one since. She did really well for her first time. She bent and straightened her legs to push her body weight (about 47 lbs.) plus the weight of the mat that she layed on.

This is when her legs were straight. She looks so serious.


Here's a video of her using the machine. Sorry, I don't remember what it's called.

     Next Amaya worked on the parallel bars. She held onto the bars as she walked. She stepped over the bumps then the cones. The cones were more difficult for her because they were higher and Amaya had to raise her leg higher to step over them (which meant bending her left knee more). She did them twice, and of course Lidie was right there with her. 

     On the way back to the children's gym Amaya walked with Kim using a two finger touch. Kim holds onto one of Amaya's fingers and Amaya holds onto one of Kim's. It's such a light touch;Amaya is supporting herself as she walks.

After the finger touch, Amaya started walking on her own while Kim spotted her. 

     Amaya walking on her own. Kim is spotting and guiding her. It's so exciting to see her progress more and more each day. Dad went to therapy today and was excited to see Amaya work. Its really neat to see it all live. I'm glad he got to go and see what me and Lidie see everyday; Amaya working hard and meeting goals! 

     On the ride home Amaya's leg was cramping and she asked if we could stop and stretch it. We stopped at a grocery store to get some fruit (okay, and some sherbet too). She asked if she could use her walker instead of the wheelchair. I agreed since she wouldn't be walking a lot. She said that stepping helped her foot feel better. It's interesting that she drew more stares in her walker than in her wheelchair. It's frustrating to have people stare. I don't think they know how different it feels to be looked at, than to be stared at. We had about ten people stare at us for several minutes, non stop. All I can do is smile and try to model good behavior for my girls.

When we got home the girls played all afternoon. They played dolls, read books, played house then started playing dress-up. This is the first time Amaya dressed up using her walker. I'm not sure what she was, but she had fun and it was entertaining. 

This is Amaya playing on the floor. She sits on a big floor pillow that one of Josh's co-workers got her (thanks, again Sharon!). It's big enough to give her support and allows her to sit and play for a long time.


Thursday, April 26, 2012

Daytime vs nighttime

     Yesterday after I posted my blog (I've been doing it earlier in the day, since bedtime is taking much longer and I'm not able to do it at night) Lidie and Amaya started playing doctors while I made dinner. They were so cute and funny. They payed so much attention to detail and mimicked Dr. Dixon (their pediatrician), Dr.Nelson and his staff so closely. They even sounded like Dr.Nelson and his staff, it was very cute. I liked that they were both doctors. I was their patient and they treated me for a fever, infection, looked at my fixator, took out a splinter, gave me a cast, and a band-aid. Amaya also put two casts on Teddy and Lidie put one on Simba.

Dr.Amaya

Dr.Lidie

Their doctor bags (some were gifts, some bought and some made). We have collected doctor "supplies" from appointments, friends, gifts.

Amaya's patient, Teddy with his leg cast sitting in her dolls wheelchair.

Lidie's patient Simba with his leg cast and cone.

     After they played we fed, bathed and got the girls ready for bed early. Amaya was so tired from waking up at four thirty that morning plus all the walking she did at school (that was the most she's walked outside of physical therapy). When I did her stretches before bed I also stretched her hip and she said that, that felt so good to her. It takes about fifteen to twenty minutes to stretch her legs before I lock the bar in for the night. We're no longer locking it in during the day, since she's no longer having a hard time with that anymore (instead I spend that time stretching her knee and doing our physical therapy homework). She was so tired and fell asleep by six forty. Since she was so exhausted she spent almost a full hour asleep before she woke up in pain. She had the same pain and numbness in her foot that she complains of every night. Ugh! It's terrible to see her in such agony and pain. There were five minutes that were really tough, but felt like hours. She screamed, cried and wriggled in pain. Once it was done she fell back asleep but I was still upset and crying; there's nothing worse than seeing your child in pain. It's pretty torturous. Once that initial moment of pain passes, then she stays asleep but continues to moan and groan in pain. I sat next to her rubbing her knee and foot for the next couple of hours. I wished so badly that she could just sleep in peace. It saddens me to see her nights be so rough, I know that they're "supposed" to be tougher than the daytime, but it's still hard. After I fall asleep I rarely hear her (I think I'm just so exhausted), but Josh does. He says she moans throughout the night, but he can shush her to stay asleep (like when she was a baby). So as you can see nighttime is definitely the hardest part for us, and quickly becoming my least favorite part of the day. The only comfort I get is knowing that this will not last forever, she will benefit from this in the long run and that my being with her, massaging her helps her.
     Today she woke up at five, the pain wakes her up then she isn't able to fall back asleep. She watched a movie until I woke up. I got her ready for school. She did great today! She took her walker again. She even transferred herself from her walker to the carpet to sit with her friends (something she taught herself to do). She did "ballerina" stretches with her class to help alleviate the tightness and pain she feels. She said her pain was often, but not too bad. I'm so thankful for Mrs.Griessbach's efforts to accommodate Amaya's stretches. Amaya is excited to show her friends her bottom pins tomorrow (she told me not to wrap them in gauze tonight). We'll see how they take it. When we picked her up for therapy it was raining hard, but thankfully Josh was able to help me get her in the car. Her teacher said that Amaya showed her class how much she's accomplished and showed them how far she's lengthened (there's a mark on the fixator that Dr.Nelson put on to measure how much the rod has moved). I was impressed that she understood it enough to be able to explain it.
     At physical therapy Amaya showed Kim and Melissa how she transferred onto the floor by herself. Melissa said kids are so smart and resourceful. They have a way of figuring things out and finding solutions to their problems. Then she got a massage from Kim followed by some stretches. During the stretches Melissa and Kim talk with Amaya and keep her distracted. She always enjoys talking with them. Then Amaya rode the bike. They took us to a new hill today, that was steeper than the one she did last week, but she handled it just fine. She seemed to have more strength in her legs and was able to pedal more easily. Lidie was very sweet and encouraging to her and gave her a kiss on the elbow then a thumbs up. Then Lidie started giving us all thumbs ups or thumbs downs. She certainly provides some entertainment. I'm so thankful for the patience Kim and Melissa show to Lidie. Before measuring her knee bends they first did some stretches. They held the first one to a count of forty five. Kim and Melissa worked hard to keep Amaya distracted during the painful work of stretching, which isn't easy. Amaya started crying and had a hard time focusing on her counting. When they measured her knee she got ninety nine, which is great. Melissa said she probably could have gotten higher, but that it was still good. She said that we might start dipping into the nineties in the next couple of weeks, but that we'll keep aiming for the high numbers that she's been getting. Melissa said she couldn't believe how good Amaya was doing and what good bone she was growing, I agreed. I have heard some stories from other parents about complications that their kids had and then they had to have several follow up surgeries. Thankfully we haven't had any complications or issues with Amaya. I asked Melissa if she thought we should slow down the turns, or keep them at the same rate. She said that as long as Amaya's pain was under control she didn't see any reason to slow down. We'll see what Dr.Nelson says on Monday at our appointment. Keeping at this rate does make the lengthening time go by faster, but does put a strain on Amaya's muscles (they struggle to keep up with the rate that the bone grows at). As we left Amaya said her pain was at a "three," which is pretty good.
     When we got home she watched a movie while I massaged her knee and foot. The girls and I had some Mexican hot chocolate (who can resist on such a cold rainy day?) then did our physical therapy homework(Amaya said she had new homework from Melissa; to use a skateboard to push with her knees), ate dinner (Amaya ate so much today; first time in awhile), then showered and got ready for bed. We had early bedtimes tonight too, both girls were tired and both were asleep by six thirty. I sat in bed typing this next to Amaya. She's sleeping now, but had a rough start again. She even asked me if I could just take the bar out and let her bend her leg. She's been asleep for almost two hours and has been whimpering on occasion then tries to move to get comfortable. I hope she sleeps well tonight.


Lidie playing soccer at physical therapy.

Amaya working hard to pedal the bike.

Amaya riding the bike today.

Amaya riding the bike up the hill. This is the first time she's done this hill. It's steeper than the other one, so it was tougher to do. But, she did great.

Amaya racing Melissa down the hall.

Look at that sweet girl struggle to get such good numbers. It's so painful, but Kim and Melissa try to make it easy for Amaya by distracting her and talking with her.

After her knee bends Amaya shot some baskets (a great way to forget those painful stretches!). She did a good job of keeping her legs straight while she threw the ball.

Amaya sitting on the giant foam chair thing ( I have no clue what that thing is called). She was waiting to throw some balls into the ball pit. She made two "baskets" thru the triangle "hoop." 




Wednesday, April 25, 2012

Moments

     This journey we're on is made up of many moments. Some are low; painful, stressful, tiring, intense, difficult. Others are high; worthy of praise, joy filled, exciting, amazing. Others are normal, and normal is a refreshing treat. It's amazing how quickly we transition from one moment to the next; we can go from a low to a high in a matter of minutes. And vice a versa.
     In the past twenty four hours alone we've had a great mix of all of these moments, lows, highs and normal. Last night trying to get Amaya to sleep was a low. It took two hours to get her pain under control and her to sleep. But, as soon as she fell sleep, she was fine. She slept pretty restfully ( a high), but woke up at four thirty (a low). She couldn't go back to sleep and Josh ended up bringing her upstairs to watch a movie. She decided to go to school for the morning before physical therapy (she hasn't gone in awhile due to pain and other appointments). She decided to try taking her walker instead of her wheelchair. She fell asleep on the ride to school and then her knee started to ache when she was almost to school. After she propped it up she was fine. Dad reminded her that she was fine, reminded her to stay calm, and that she was in control and capable of taking care of her pain. Dad said that when they walked in lots of kids were staring at her and started walking slow with her. Dad said she did great. She didn't clam up or shutdown (she usually doesn't like a lot of attention on her). Mrs.Griessbach and her classmates were happy to see her, and she was all smiles! When Lidie and I went to the office to sign her out we talked with the two ladies in the office. Patty said that she got to see Amaya's fixator for the first time today when Amaya came in to go potty (she uses the nurses bathroom). She said that she was so amazed by the fixator, how it worked and how well Amaya is doing. She said that Amaya told her she was riding a bike and a scooter and showed off her shoes. I showed her and Victoria pictures of the fixator, and the pins (which kind of freaked her out a bit). They couldn't believe that Amaya was walking. Amaya only stayed for a little over an hour, but her teacher said she did great the whole time she was there. She was starting to get pretty uncomfortable when we got to class. She said that Amaya walked so much today (all the way to the office and back). She said that the class made a stretching song that they sing when Amaya needs to stretch her leg (all the kids sing and stretch their legs too), its pretty cute. Josh and I were so proud of her for her efforts, her courage, her smiles, and her willingness to go  to school even though she's in pain and discomfort.
    When we got to therapy Kim massaged Amaya's knee and did some stretches before she walked. She walked around the room then out to the hall. But this was the first time that she walked all alone! No hands! Kim was in front of her with her hands out to spot her, but Amaya did it all alone! So awesome! Then she rode the scooter for a bit, then the bi-scooter down the hall and back. She worked hard. It takes a great effort for her to keep her foot, ankle and leg straight. Both scooters force her to push down with her thigh muscles. Then she walked back to the bench to do the stretches and knee bends. The first knee bend she was able to get to 92 degrees, Kim held her bend there for a count of thirty. The next bend Amaya held for a count of 37, to help her stretch her muscles. I could tell by her face, and the way she was counting that she was in pain. For the next bend Kim asked Amaya to pick a number between 30 and 40 to hold the bend to. Amaya picked 35 (I love that she didn't go for a low number). Kim pushed her leg, while Amaya counted. It hurts more when someone else pushes, and Amaya was almost in tears. For the next reading Amaya suggested that they put a number on the goniometer and try to get her leg to that number. They picked 102, since that's what she did yesterday. But, when her leg was at 98 she was crying. Ugh, it was so sad to see her in so much pain. She said. "I can't do it anymore." But, they pushed on until they got 102. Ugh, man that was tough. Its hard to see and hear her in so much pain. They massaged her legs and tried to help the pain go away. Before she left they let her try shooting a basket, which she made (while standing alone) then made another one with her eyes closed. Then she tried to throw a small ball from the ball pit thru a small triangle that hangs over the ball pit. She made the last one! As we left she raced Melissa down the hall. She pushed herself in the wheelchair and beat Melissa. She had the biggest smile on her face and I was amazed. One moment she was in utter pain, crying then the next she was shooting hoops, throwing a ball and racing with the biggest smile on her face. Her resilience and ability to bounce back are inspiring and amazing. I'm proud to be her momma. And I'm so thankful for Melissa and Kim's efforts, encouragement and help. They make therapy fun for Amaya and are patient with Lidie.
     When we got home I massaged her leg (I could tell her muscle was tight). While I massaged her we watched an episode of Glee and she said that she wanted a friend who was in a wheelchair. Because she doesn't have any friends in a wheelchair and she would like one, someone who's kind of like her. She said she thinks they would make a good friend. I told her that I bet she could find one at physical therapy or at school, and all she had to do was be nice. She said she's gonna keep her eyes out for a new friend.
    As you can see we have many highs and lows in a day. Much to celebrate and some that causes us pain. Thanks again for reading, its nice to know that so many are reading along (between fifty and a hundred people a day!) and being a part of our journey.

"Look ma no hands!" 

Amaya on the bi-scooter. She was going pretty fast so it was hard to catch her in focus. But you can see her legs working!

     Lidie playing with the soccer ball. Amaya kicked the ball several times around the room (the hardest she's been able to kick a ball since the surgery).  Can you see the basketball net on the right? Amaya stood up there on the platform where Lidie is at and shot baskets into the hoop.

Knee bends; not fun!

Amaya throwing the ball into the ball pit. Can you see her standing so tall and straight?! 

Tuesday, April 24, 2012

Keeping up the work

     Last night had a real rough start for Amaya and me. We got everything done and her in bed by seven thirty. Regardless of how sleepy and tired she was she was in and out of sleep for about three hours. She had so much pain; mostly in her knee and foot. Her toes were numb and hurting her so intensely. Night pain is so much worse than the day time pain. Amaya cried and moaned while I rubber her knee, foot and toes. Somewhere between ten and eleven she finally started to get some good sleep. And as I started to sleep I heard Lidie crying down the hall. I ended up falling asleep in Lidie's bed until this morning when both girls woke up. Both girls wanted me to be with them, right next to them, but not with each other. I was exhausted and torn. How could I be in two places at once? And no matter how much dad tried to help, neither one wanted him. Eventually Amaya calmed down and went upstairs with dad. She settled on the couch while dad got ready for work and I got Lidie ready for the day.  By the time Lidie and I came upstairs Amaya had calmed herself.
   Amaya had a dental appointment before physical therapy. She had a small cavity that needed to be taken care of before it got bigger. Me and Lidie walked her back and I helped transfer her onto the dental chair, then Lidie and I waited out front for her. When she was done I went back to help her back into her wheelchair. The dentist said she did excellent. He said she's his best patient, he's always said that about Amaya. He said that she told him about her new shoes, therapy and how she was doing. He was genuinely happy for her. Then I filled him in on all her progress. He congratulated her on all her hard work and progress. We had an hour to kill so we ran some errands then we headed over to physical therapy. On the way over I felt bad for her; not only did she have knee pain, but her mouth was numb and sore too. This girl doesn't get a break. Once we got to physical therapy they told us that we had missed our appointment. Apparently the time was changed several weeks before when we added all of our other appointments, but I wasn't told that the time had changed. I was frustrated. We went down the hall to scheduling to see if Melissa or anyone else had a cancellation and could squeeze Amaya in today. The lady paged Melissa for us, who sent Kim in (the intern that works with her) to work with Amaya today. I was so thankful that they made time for Amaya. Physical therapy is so crucial now and missing appointments isn't in Amaya's best interest. Since Kim is an intern we had to stay in the same room as Melissa (she was working with her next appointment), so we worked in the adult gym today. Kim congratulated Amaya on her hard work over the weekend and her huge improvement yesterday. I told her everything Amaya did over the weekend and she was proud of Amaya. She massaged Amaya's knee and then had her walk around the gym. When she walked she didn't use the walker, just held on to Kim's hands and finger. Kim could tell a big improvement in Amaya's walking. Amaya even took a few steps on her own! I pushed Lidie around in Amaya's wheelchair. During knee bends Amaya got 93 on her first bend, then 101 (wow! what a jump) then 102 on her last bend. On each bend Amaya held her knee for a count of thirty. Kim said to continue to hold the bends for a count of thirty. She said that the long holds help Amaya get the big numbers that she needs. She encouraged us to keep up our work at home. Which we are. Today after she worked on her homework from school we did our physical therapy homework. We did bends, stretches, and strengthening work then did massages on her foot and knee. We'll do more stretches before bed when we lock the bar in for the night followed by more massages. But, at least we didn't have to make dinner tonight, Josh's mom made us some. It's always nice when people make us food; one less thing to think about and do.

Amaya riding around the house on her sit down scooter (I forgot what its called) that her grandparents bought her awhile ago. I'll try to get a better picture of her on there. 

Amaya getting ready to walk at physical therapy today.

Amaya walking. She did a really good job of keeping her left leg straight and the knee straight.  
 

Monday, April 23, 2012

Proof is in the putting

     My step dad use to always say "the proof is in the putting." Except that with his thick Southern accent I thought he said "the proof is in the pudding," which made no sense to me. Now, as an adult it finally does. All of the putting (the massages, the exercises, the stretches) that Amaya and I did this weekend paid off. This morning I could tell her muscles weren't as tight as they have been. At physical therapy she exceeded her number from Friday and our goal for today. When we got to physical therapy Amaya made her goal of 105, I thought and hoped she'd reach 100, or at least 98 (that's what she got on Friday). On her first attempt Amaya got 95. Cassie had her hold it for a count of 30. The next bend was at 98 degrees. She also held that for a count of 30. Both of the bends were hard and hurt her. On her third bend she got 105! Wow! I was so happy and proud of her. I knew at that moment that all of our hard work had paid off.  Cassie could tell that Amaya's muscle was still tight, but not as bad as it has been. She massaged her knee then got to work. After the bends Amaya used the bi-scooter. She went down the hall, then returned going backwards. I could tell a huge improvement from when she first did it last week. Then she walked, using the walker, down the hall, up the hill and back. Her steps were so much lighter, smoother, straighter and quicker.
    On our way to therapy we stopped by our old school, Clare Cherry. It's always nice going to visit, like going home. We went to be a part of their Earth Day recycled instruments parade. Amaya made a drum/shaker out of a gallon bottle. Lidie reused her recycled shaker from when she went to pre-school there. The girls loved seeing old friends, talking to old teachers and being a part of the parade. After the parade we visited the kindergarten and first grade class. We saw bullfrog tadpoles, butterflies and all the beautiful art they had made. When we were there the class was talking about promises they could make to the Earth to help take care of it. Ms.Shannon asked Amaya if she had a promise and Amaya said, "whenever I see trash I promise to pick it up."
     After therapy we ran some errands. We went to Costco to buy children's Tylenol for Amaya. We got four bottles for nine dollars (what a bargain). Since that's the only medication she's on right now we made sure to have enough on hand. We've completely weaned her off of the Tylenol w/codeine. Next we went to Fresh N Easy to get some groceries. We had quite a few things to get so we ended up getting a shopping cart. Amaya pushed herself part of the time, other times I pushed her and pulled the cart. Some of the time Lidie rode on the shopping cart and at times she pushed the shopping cart for me. I'm not sure how we did it, but we did it. In fact two different ladies stopped us to compliment the girls on their behavior. I was so happy to see the girls working together to get our shopping done, and its nice when others notice too. As we shopped an elderly couple asked Amaya what happened to her. I told them that she was lengthening her bone. They were so excited for her. They said that it was pretty amazing and congratulated her. She showed them her fixator and they were impressed by her. They told her that she looked so healthy, strong and great. Amaya smiled and thanked them. Interactions like that are a rarity and much more encouraging than the stares we normally get.
     Amaya said that she slept good last night, and didn't remember that she woke up at midnight in pain and having to use the restroom. Tonight we'll try the same routine and see if we can get the same results.

The kids at Clare Cherry marching in the Earth Day recycled instruments parade.

Here's Lidie and Amaya with their instruments.

Lidie played in the ball pit today. She kept laughing and wouldn't sit still for a picture.

Amaya doing her stretches with Cassie.

Amaya transferring from the walker to the bi-scooter.

Lidie riding the scooter down the hall, while Amaya uses the bi-scooter. You can see the length of the hall that she works in. This was her on her way back, going backwards.

Getting ready to walk down the hall and up the hill.

Lidie and Amaya walking back. Lidie never wants to go too far ahead, she always waits for Amaya.

Here's Amaya walking to the hill. Isn't she fast?

Amaya walking up the hill. I love her little hop halfway up. She's so funny!