amaya at lake

amaya at lake

Monday, October 29, 2012

Glow in the dark

   Today the girls were given some glow in the dark stickers and bats for Halloween. At first they didn't glow. But as we put them next to a light they started to glow. The best way to get them to glow is to put them near a light (either sunlight or a light bulb) second put them somewhere dark. The longer they spend near light the brighter they'll glow. And the darker the room the brighter they'll shine.
   As I thought about these glow in the dark stickers and toys I thought of us as people. The only way we shine is if we've been charged by some light (family, prayer, church, worship, self reflection, growth, etc). And the darker the circumstance the brighter we will shine. I know this is true because I've seen it happen in my own life. I've seen this in our home these past few months. The days or moments that we were worn out and had no light in us, we didn't glow. But when we were refreshed and charged we managed to glow in some of the darkest moments that we've had to face as a family. I'm proud of Josh, myself and our family. We had to work as individuals, as partners and as a family to refresh one another and to glow brightly during the darkness. It wasn't always easy, yet we managed. I'm humbled by the darkness and the moments we struggled through. And proud at how we not only survived but thrived. Somehow we managed to Glow!
   Thank you for all the times, and the ways that you helped refresh us. Many of you served as lights for us that helped refresh us and prepare us to glow in dark times. Thank you. I am forever grateful for your care, kindness and love.

Disneyland

     Yesterday we went to Disneyland with the girls, my sister-in-law and nephew. We haven't been in almost two years (which is a lot for us Southern California residents). We were able to get discounted tickets after participating in the CHOC walk in the park two weeks ago. After these past seven and a half months we were so excited to go and treat the girls to a fun day. When we were there I thought of the Super Bowl commercials that show the MVP for the winning team. He's celebrating their victory then looks into the camera, the narrator asks, "now that you've won the super bowl what are you going to do?" and he replies with, "I'm going to Disneyland!" As a kid, that was my favorite thing about the Super Bowl, the commercials and seeing who was going to Disneyland. Yesterday as we walked through the park I wanted to shout out to passersby, "we're going to Disneyland!" It would have made no sense since we were already there, but in my head I was shouting it out nonetheless. Because in my head its like we just won the super bowl. We've survived, accomplished something so amazing that I'm so happy. And I'm incredibly proud of our two girls. Amaya has endured so much pain, and discomfort. She has set and then met high goals for herself. She's been helpful and kind to other kids with PFFD who have or will have a lengthening surgery. She has continued to work hard at school, and at physical therapy. She manages to live a happy and full life despite the obstacles that come her way. I'm proud of Lidie for being so kind, protective and empathetic with her sister. She's had to grow up a lot these past months for a three year old and put her sister before her many times. She's had to be flexible, patient, and quiet (at many appointments). We've asked and demanded much of her and she's risen to the occasion each time, okay most times. After all she is only three.
   If anyone deserves a day at Disneyland its these two girls. A day to just be kids, to have fun, let their imaginations run wild and have some extra treats. One of my favorite memories was watching the girls during the parade. They got so excited as they would see the floats turn around the corner. They would gleefully yell out the characters name and point with such joy filled eyes. I was filled with joy and happiness watching them. Another great memory was having Amaya drive me around in the Autopia ride. She was having so much fun and we both laughed so hard. I also enjoyed seeing Lidie's face as she tried to understand how the birds and flowers sang inside the Tiki room.
    It was a wonderful day and I am grateful for time with the girls and Josh. Its still crazy to me to think that just two weeks ago we were there participating in the CHOC walk in the park (We raised $450 for the children's hospital of Orange County. You can still donate until October 31st on their website www.chocwalk.net.). Two weeks ago Amaya still had her fixator on and we were heading into another surgery.  Life has changed drastically in two weeks. Thankfully for the better.
The girls enjoying the day!
Amaya watching the parade.
Lidie mesmerized by the parade.
My nephew looking not very impressed by the Dumbo ride. But I enjoyed riding with him! 

Saturday, October 27, 2012

Pumpkin & pre-Halloween fun

    Friday Amaya surprised us by walking up the stairs all by herself! As I watched her I was happy, proud, excited, and a bit nervous that she might fall. She was ready to try it and did it! She did pretty well, but was still uneasy. It'll take time and practice for her to get her footing back. She's mentioned to me a few times that she wishes she could run and jump. I let her know that she'll be able to soon enough and that seems to hold her off. Her desire to be active is a driving force that pushes her to try new things, like the stairs. She ended the day by walking down the stairs all by herself. Friday was also the first day since her fixator was removed that Amaya didn't have any pain medication, not even before bed. Today she also didn't take any pain medication. She didn't complain of any pain, except for the occasional bump.
    Today we took the girls to the Trick or Treating event in town. They were excited to dress up and to get candy. Amaya rode in her wheelchair. Lidie walked along and then later sat next to Amaya in the wheelchair when she was tired. We got the usual amount of stares. I was a bit surprised, because I figured without the fixator the stares would lessen, but I could see why we drew some attention. I mostly noticed kids looking at Amaya then smilling. One woman told Amaya something to the effect of, "Oh, I see you got the easy way." I'm sure her intentions were good, but if only she knew. Amaya has by no means had it easy! Riding in a wheelchair isn't easy. Its her only option. I bit my tongue and walked away.
     At some of the stores there were a couple of steps to get in so Josh would carry Amaya over the steps so she could trick or treat. She didn't want to miss out, and was willing to push herself to get up and walk some and have Josh carry her the rest of the way. At one store there were quite a few steps so Josh just carried her the entire way. When we got in a woman looked at Amaya chuckled, then asked her. "What are you suppose to be? A broken doctor?" Then giggled. I was shocked. Speechless. Was this woman serious? I looked at her again, because I couldn't believe my ears or eyes. I checked to see if she was a teenager or a young adult, not that that would make her comment any less rude or inappropriate, but no she was in her thirties (at least). I just stared at her. Josh said, "no. She just had surgery on her leg last week." Then the other women in the room gave out a collective, "awe." I'm not sure if there's another sound that's more pitiful or annoying to me. I don't think they realize how condescending it is. We left there, but that encounter stayed with me. It bothers me, saddens me, irritates me, annoys me, and pushes me to tears. Do you know how incredibly frustrating it is to deal with adults like this?
   After we got home we made the best of the rest of the day. Josh helped the girls carve their pumpkins, the girls ate candy and shared some with us, we ate dinner, Josh cooked the pumpkin seeds, and the girls had a dance party. All in all it was a good day.
    Here's some video of Amaya walking on Friday. She's doing pretty well. We still have to remind her to step with her heel first, and to alternate her feet. It's a hard balance of letting her try it on her own and reminding her how to do it correctly. We don't want to nag or bother her, but I worry that she'll learn to do it incorrectly. She's getting better each day, but its a slow process. She's still a bit timid in her steps but she's gaining confidence each day. This is the first time in her life that she has a stable knee (Dr. Nelson did her super knee in January of 2011), a stable hip (he did a hip osteotomy in March when he put her fixator on), and her left leg is 3.1 inches longer (thanks to her lengthening). It's like working with a completely new leg! So even though I know she knows how to walk, I want to make sure she learns how to walk with her new leg properly instead of then later having to unlearn bad habits. She's 
Amaya our orthopedic surgeon and Lidie our fairy-ballerina.
Lidie showing me some "purple nerds!" She couldn't believe people gave her candy! She's three going on four and this is her first time that she's aware of what's going on.

The back side of Amaya's pumpkin. She wrote, "Boo! I'm a ghost!"
Josh and the girls carving their pumpkins.
Here's Amaya's pumpkin.
Here's Lidie's. 

Thursday, October 25, 2012

A week without a fixator

   Its been a week since Amaya's fixator was removed. It's been a bit of a blur. It's gone by so quickly. I'm still trying to process it all. I'm amazed and overwhelmed by the past seven and a half months. I'm a bit speechless right now, but hopefully I can find the words to share with you soon. A week without a fixator has brought some much needed relief to us all. We're so happy with the progress Amaya has made in such a short amount of time. She's walking (with her walker), gone back to school, is eating more, her wounds are healing nicely and she's doing her stretches regularly. I'm enjoying things like; no gauze changing, peaceful showers, a pain free daughter, and easy restful nights (actually we're all enjoying these). I'm grateful for all of these things and feel a bit spoiled by things that most people take for granted.
   Amaya's pain has lessened even more and she's only asking for pain medication once or twice a day (usually first thing in the morning and before bed). She' still a bit wobbly when she walks, but she's continuing to practice with and without her walker. She still has some stiffness in her knee, but her stretches are helping. Yesterday Melissa, Amaya's physical therapist, called to check in on her. She was happy to hear how well Amaya was doing. I was touched that Melissa took the time to call and check in on Amaya. That just shows you how thoughtful and kind she is. I mentioned to her the stiffness Amaya has been feeling in her knee and how difficult it is to straighten her knee. She said that walking and doing the stretches she recommended will help Amaya's muscles loosen up. She said walking will help the most. I thanked her for her advice, for calling and passed the message onto Amaya. Amaya was surprised and happy that she called.
    Thank you all for your continued love and support. As I have some free time I often think of the hard times that we've been through. Its a lot easier to process them now that we've moved past that phase. To those of you who lessened our load, who sent us your love and support, who cheered us on, who were patient with us we're grateful to you all. This has been such an incredibly challenging year for our family and we've managed to get by. Thank you all.
     Yesterday I took the girls for frozen yogurt to celebrate a week without a fixator. We also celebrated another good report card and conference for Amaya. Even though she missed fifteen days of school and had fourteen days that she missed part of the day to go to physical therapy she still got all E's (excellent) and G's (good) on her report card. Her teacher also said that she's above grade level on all areas. Sorry, for bragging a bit, but I'm very proud of Amaya. She had a lot on her plate these past few months and still managed to work hard and excel at school. 
Lidie's smile, isn't it contagious?

Tuesday, October 23, 2012

Back to school

    Amaya decided she wanted to go back to school yesterday. I was planning on her having the entire week off, but she was ready to go back. Since her pain has been easily managed, and her school is having minimum days all week we figured it was worth a try. I texted her teacher and gave her a heads up on Sunday. She was happy to hear Amaya would be returning to class. I worried and wondered during the day how she did but Josh sent me a message saying that he peeked in on her at lunch time and she was smiling, eating and having fun. Her teacher said she had a great day. She'll go the rest of this week, then go off track for five weeks and get a much deserved break.
   It took Amaya extra time to get ready in the morning because its not easy for her to get her pants on and it takes longer to walk from place to place as she gets ready. I noticed that her leg was stiff and she had a hard time straightening it (her leg is bent most of the day). I had her do some of the stretches Melissa had suggested and it made a big difference. I was proud of her for wanting to go back to school so soon and for putting in the extra time and effort it took her to get ready to go. After she was dressed and ready to head up I asked her if she wanted me to carry her up, but she said no that she would prefer dad doing it. So I went up to get dad. By the time he got ready to get her she had gotten herself up the stairs. She's quite determined and creative (she sat on her butt and scooted up each step). She had done that when she had her cast on after her super hip surgery a couple years ago.
   Amaya said her friends were happy and surprised to see her. She said they all yelled and cheered with excitement. She's been with this class since kindergarten and many of them are very close friends. She got out of her wheelchair to transfer to her seat. Its still very difficult for her to do that, so I suggested she stay in her wheelchair all day and assumed that she would. But she said it didn't hurt and she really wanted to do it. She had to sit out for P.E. and wheeled herself to the cafeteria, etc. She was so happy to be back in class and in school.
   Throughout this whole experience most people are surprised that Amaya goes to school at all. Many assume that she's home-schooled either part time or full time. When we tell them that she isn't they're surprised and sometimes confused. They can't picture her going to school (after a surgery, with a fixator on, with any pain and discomfort she may have, with all her appointments, even though she misses so much school, even though she has to do physical therapy, etc.). For us it made sense for Amaya to attend school; she enjoys it, its a good distraction, and it helps keep her life as normal as possible. She did miss many days because of her surgery, recovery, and pain. She had many days when she attended only part of the day because of a doctor or physical therapy appointment, and sometimes both. But she always looked forward to school, to seeing her friends, to homework, getting a break from home, etc. Her teachers were very kind, helpful and accommodating to her needs. We're so lucky and thankful that she's a part of a loving school community where all the teachers keep an eye on her. And it helps that her dad works at her school too. It wasn't always easy, but I'm glad she continued with school. It was a good outlet, distraction and source of comfort and encouragement.
   Josh also returned to work this week. Even though he's still tired and worn out form the past seven and a half months he has a busy work week ahead of him. He's having to make up all the meetings and testing that he missed last week. Its a bit of a transition for us all.
    All in all we're doing well. Amaya has an increased appetite (eating more now than she did the entire time she had her fixator on), her pain is minimal (she's on little pain medication, only two doses per day), she's able to sleep well, her wounds are healing nicely, she's enjoying her extra free time (not having to go to therapy three times a week) and she's been walking with her walker a bit more each day. Thank you all for your continued help, love, prayers, support and well wishes.
      It's strange that it'll be a week tomorrow since her fixator was removed. Time has flown. But life with a fixator and watching Amaya through all this has taught me to live in the moment. It was a nice survival tool; we couldn't dwell on a painful, difficult moment ,we had to move on and deal with the next moment and whatever it brought. So its hard to remember what happened a day, week, or month ago. It's hard to remember all that we've been through, and when I start to its a bit overwhelming. I'm so glad that I always have this blog to go back to and read for a reminder.
Here's Amaya wearing part of her surgeon's outfit. She wanted to play doctor with Lidie and I. 
Lidie was the nurse and I was the patient. I always have to be the patient.
Here's Amaya doing her stretches before school. You can see her knee is bent pretty well. It's like that on its own. After months of having to work so hard to get to ninety degrees now the bend comes easily (not that its at ninety degrees though).   
Her leg is always the most stiff in the morning but after just ten stretches with the band I noticed an improvement. See how much straighter her leg is now? She's having to work to straighten her leg. If you remember those last few weeks (or was it days?) before her fixator came off she had a lot of tightness in her hamstrings. She's still having some of that, but these stretches are helping. We're having her do them in the morning and at night.
Here's a look at her bottom pins after her shower. Most of the pin sites bled just a tiny bit in the shower.  It took a bit for the tape and gauze to come off, only because the tape stuck to her skin. Since it was a bit difficult (but nothing like they use to be) we decided to put band aids on all the pin sites and the incision in hopes that they would come off easier than the tape. 
Here are her middle pins. These seem to be the biggest scabs.  
Here are her top pins. I'm amazed by how well these are healing. These always gave us so much trouble, so I'm surprised by how well they're healing now. The very top one (the one on the right) is the smallest of all her pin sites. 
Here's her incision. You can see some bruising on her hip (on the bottom of the picture). She says it doesn't hurt, which is good. 
Here she is doing her stretches before bed. She's such a trooper (that's a word that many people use to describe her, so I thought I'd use it too), she didn't complain that I suggested the stretches and did them willingly. She's learned that physical therapy does help and makes things easier for her so she works hard to help her body heal and recuperate. You can see the colorful band aids all over her leg. She had nine in all. 
This is what her middle pins looked like tonight. Only these two (the one on the right and the one on the left) had the scabs come off and bleed a bit. The rest all have scabs and are healing well. Amaya thinks they look like blueberries. The band aids came off pretty well in the shower tonight. She's back to showering in her lawn chair, like she did wehn she first had her fixator put on. It's helped since she's still wobbly and we didn't want her to fall in there.  We decided to put band aids on just those two sites that bled and nothing on all the rest. 
I found these in a drawer today. I can't believe how many we have. I've already recycled many, and we have more down stairs.  
Amaya and I thought this quote is fitting for someone who will be having a lengthening surgery. It pretty much speaks for itself.  

Monday, October 22, 2012

Pumpkin patch

   Yesterday we decided to venture out of the house for the first time since we got home from the hospital last week. We went to the pumpkin patch with friends and family and had a great day. It was nice to breath fresh air, see friends and be out of the house. It was such a nice fall day. We took Amaya's wheelchair because she's only able to walk with her walker right now and the pumpkin patch has very uneven ground with rocks, dirt, and wood chips. Also there would be a lot of walking and we didn't want Amaya to get too tired. She did great and even got up and walked around the field to pick her own pumpkin.
Being able to rub her leg for the first time in months. It was such a strange feeling, I kept trying to touch lightly so I wouldn't hurt her leg, but she let me know that it didn't hurt. I was so use to hurting her when I touched her. She even let me touch her pin sites. She said it felt good. Enjoying these simple things has been so nice.
First time wearing jeans.
The girls with ballon animals.
This little goat tried eating Amaya's wheelchair.
In the petting zoo Amaya decided to try walking. She used her wheelchair as walker to help her. 
Lidie having wheelbarrow fun with her friends.
 Amaya with her pumpkin. She decided she wanted a green pumpkin this year.

Sunday, October 21, 2012

Pants, tights and leggings oh my

    Friday night was another good night for Amaya. She fell asleep easily by eighth thirty. It's so weird to not have to spend hours to help get her to sleep (showering, wound care, stretching, locking her bar, massaging her foot or knee, etc). Its been such a nice treat. Last night she decided to try sleeping in her own bed. She slept well, and only needed pain medication once in the middle of the night. I also massaged her foot for half an hour to help her fall asleep.
   Amaya started the day yesterday by getting herself up out of bed, walking down the hall, and going up a couple of stairs (while Josh spotted her). Over night some of her gauze slipped and she saw her pin sites and said that they "look pretty good."I put new gauze on them, even though they've pretty much scabbed over. But this way her and Lidie don't have to look at them, and the pin sites can be covered so they don't get scratched easily. Amaya is still doing good with the children's Tylenol. I gave her a dose in the morning and she didn't need another until bedtime. I'm pleasantly surprised by her pain level. She has some discomfort, some achiness and is a bit sore at times, but all in all she's handling it very well. Her leg muscles are still tight, mostly when she tries to straighten her leg. I started some of the stretches that Melissa, her therapist, had taught us and recommended to do after the fixator was removed.
Here's a look at the fixator pieces we got to keep. They're heavier than they look. 
Here's Amaya walking up stairs. I was so surprised and proud of her for trying it. She had already done two steps and was trying more so that I could video tape her. Josh was reminding her to alternate her legs, to put all her weight on both legs and to bend her left knee. You can hear her pain and frustration in her voice.
Here's the second part of that video. 
Here's what her pin sites looked like in the morning.  
Here's what her leg looked like after I taped on new gauze. They stayed on better this way than wrapped all around her leg.
I found this quote yesterday on the Mommies of Miracles Facebook page. It was so fitting for Amaya. As I changed her gauze I couldn't help but notice all her scars. She has the nine from her pin sites, the incision from where the rush rod was inserted, the two long ones from her super knee surgery and the one on her hip from her hip osteotomy. Her scars are records off all she's been through, endured and overcome. I've seen her suffer and show her spirit throughout it all. She's amazing. All these scars have helped her become the person she is today, and whom she will become later in life. 
Here's Amaya's outfit for the day. Its the first time in over seven months that she was able to wear tights. She tried on sweats, leggings and pants and finally settled on this outfit. She's grown quite a bit since the last time she was able to wear pants so she was either too tall or skinny for most of her clothes.  Some of them did fit, but were uncomfortable on her hip incision or hard to pull over her hip so she decided on something soft, these tights.  

Saturday, October 20, 2012

First day without a fixator (re-post)

    When I uploaded my last blog post it accidentally erased my post from our first day home after the fixator removal. Even though it was just two days ago I can't remember everything that I wrote. I'll add the pictures I had and try to piece what I had. It's very frustrating! So please bear with me.
  Thursday was a good day. Amaya slept well Wednesday night and only woke up twice in pain. She was able to fall back to sleep pretty easily and quickly. It was strange not having to massage her foot or knee to fall asleep or to go back to sleep. I rubbed her hair to help her stay calm and fall  asleep. I gave her pain medication once during the night then slept through my alarm for her second dose, but she slept thorough the rest of the night with no complaints (about seven hours). It was so nice for all of us that she had a good nights rest. She had minimal pain and we gave her her pain medication every four hours. She was taking Tylenol w/codeine.
    Lidie was a bit emotional in the morning but later calmed down. Occasionally she said "I can't believe Amaya doesn't have a fixator!" She's still amazed and surprised by it all. She was very sweet and helpful. She would bring stuff to Amaya and put things away for her saying "of course, you just had your fixator removed." She was very careful with Amaya's leg but occasionally bumped into it. Ouch! Amaya didn't complain of pain very much, just occasional spasms, when she tried to move, and occasionally every few hours.
   Amaya was hesitant to try walking, and was building her nerve to do so, but she did get up and stand on her leg a couple of times. She said it felt good to stand on it. We spent the day at home resting. I had a to-do list, but left it for the following day. We watched TV, napped, relaxed, played and ate. Amaya's appetite slowly started to come back and she began to eat a bit more.
   My mother in law brought us over some spaghetti for dinner and our friend Sara brought us shells for the next day and some colored pasta for Amaya to make jewelry out of. We received calls, messages and help. We're grateful to you all for being a part of this journey with us. Thank you all for the help, love, and support.
Even though its an ace bandage Amaya decided to call it a "fake cast" and decorate it with markers. She had us all sign it for her too.
Here's what her leg looked like wrapped up. The ace bandage goes fro her upper thigh down to her toes.
Here's a sloe-up of her hip and bottom. It has that extra large bandage on it because of the extra drainage she had in the recovery room. The resident added it to help catch any drainage from her pin sites. We didn't notice any more drainage today.

Overcoming fear

   Thursday night was another good night for Amaya. I can't tell you how wonderful it is to have her sleep peacefully and pain free. I'm getting more sleep at night than I have in almost eight months. I'm slowly recovering my sleep, but midday still get tired and want to nap. Amaya fell asleep quickly and only woke up once in pain. I gave her her next dose of Tylenol w/codeine then she slept the rest of the night. Yesterday she woke up in a bit of pain. We gave her Tylenol and her antibiotic (she'll be on it for 14 days total). We wanted to see how she would do with regular Tylenol instead of Tylenol with codeine. I wanted to wean her off of the codeine soon because it messes with her mind, and mood. She gets very cranky and a bit on edge. She cried and complained of a very itchy back. Josh rubbed some anti-itch cream which seemed to help. After about twenty minutes her pain, and itchiness lessened. She didn't mention itchiness again all day and the Tylenol seemed to take care of her pain. She didn't ask for pain medication all day. I'm very surprised by how minimal her pain is. She aches when she moves, or when someone moves on the couch and sometimes complains of spasm-type pain, but for the most part she doesn't complain of pain. Which is a pleasant surprise.
    Yesterday was about facing and overcoming fears. Amaya had two big things to face; walking and removing her gauze for the first time since her fixator was removed. I have pictures below walking you through the process. I included pictures of her pin sites. I'm not sure if you want to see them or not, but I think its important to document. Not only for us but for others who will be going through this and want an idea of what to expect. They're really not that bad (at least not as bad as I thought). 
   I tried to prepare her all day that we would be removing her gauze later in the day. As evening approached she asked if we could skip it, or postpone it by a day. We could tell she was nervous and tried to calm her nerves by letting her know that its similar to the daily gauze changing we did each day for months. But for her it was a new thing because there was no fixator, no pins, and she was scarred of what her pin sites and leg would look like. As we prepared for it I wished we had Valium; for her and us. She was frazzled, but calmed down once we started to remove the ace bandages. That is until she saw the blood on the gauze. There were three gauze pads on each pin site, then it was covered by a cotton type wrapping. There were many layers and it took a long time to remove it. We did most of it outside of the shower but waited to do the last parts in the shower to help loosen the bandages from the pin sites. Amaya removed the gauze and the cotton type wrapping alone. She struggled with wanting to do it by herself (she had been removing her gauze the last few months with her fixator), but not wanting to see the new pin sites. She was scared, nervous and freaking out. It was one of the worst times ever. The only other time that compares is the first day we changed her gauze when she first had her fixator put on. I was with her for the first forty minutes but then got just as frazzled as her. Josh took over when she was in the shower. Her screaming, crying and yelling had us all on edge. It's hard to accurately describe how crazy and sad it was. My body was flushed, I wanted desperately to spare her anymore pain, remove her fear and just get it over with. Its a balance of pushing through to get it over with, and giving her time. She didn't seem to be in pain which was nice, only afraid, which is just as intense and painful.
  In the shower Josh used some scissors to cut the gauze wrap free from her leg. It took another thirty to forty minutes to remove that, the gauze on the three pin sites plus the bandages on her hip (they were glued onto her skin). It was draining and sad. Even when I wasn't in the room I couldn't help but be bothered by her screams and tears. In the shower the water made the blood drip out of her bandages which only gave her more panic. She tried to help, only let Josh do a little at a time, wanted to look then didn't want to. When I went back in to help I was struck by the smell. Ugh, there was so much iron in the air it was gross. I instantly thought of a war scene or a surgery or something else equally intense. It was such a raw, overpowering, intense smell of blood. It was crazy. I hope this isn't too graphic for you parents who will be going through this. I just hope that it helps prepare you for the possible craziness that lies ahead so you're better prepared. I wish there was a parents guide to life with a fixator. I hope this blog serves as that to other families. That's one of my main motivators in sharing the good, the bad and the ugly of the lengthening journey. 
   After she shower Josh carried Amaya to bed. She still refused to look at her pin sites and didn't let Josh look at them either. I told her I had to document them so I took some pictures before wrapping them up. She was still a bit skittish and nervous as I wrapped her pin sites. As I wrapped I noticed how tight her skin looks; like its being stretched. By the time I finished wrapping she was calm and all smiles. I'm always amazed by her ability to bounce back. Josh and I certainly take a few more minutes to bounce back. Its crazy because in many ways we've had to become desensitized to her cries, screams and blood. I don't think people understand what "normal" is like for us now. I'm looking forward to returning to our old normal. I'm grateful to have Josh on this journey with me. His calmness helps get me through such intense moments.
      I encouraged her all morning to get up, put some weight on her leg and try some steps. I told her that by lunch time I wanted her to walk half way across the house. Although I wanted her to relax I knew that her leg would benefit from walking. This was the sequence of her first steps. She decided to do them without her walker since she was just going from the couch to the coffee table and back. I was a bit scared that she would fall without her walker, but she did great. She said it felt good to be up.
Here's video of her first steps. I'm not sure if you can hear her, but when I ask how does it feel she says "easy. It just hurts a little." I had asked her to walk halfway across the house, but she decided to do the entire house. Later she got herself up, walked to and from the bathroom all by herself. She's getting a bit more comfortable each time.
Here's the second part of that video. You can see how much quicker and smoother her steps got just in a matter of seconds. Its so nice seeing her up and walking.
Removing the ace type bandage (aka her "fake cast"). There were three pieces to unwrap. This part was pretty easy, but hurt a bit when she had to lift her bottom to unwrap it. She said it felt good to have that bandage off her leg especially when she took it off her foot. It let  her leg breathe and relax. Do you notice the good bend in the knee? It's pretty close to ninety degrees all on its own. Her leg is bending a lot more than it is straightening. We're going to begin some light hamstring stretches tomorrow to help with that. Melissa said that walking will help with that too. Its crazy how quickly her leg is adjusting to not having a fixator. 
This is when she started to get nervous and freak out a bit. Seeing the blood, and how much was there bothered her. 
Here are her bottom pins. The very bottom one is almost completely closed. Each pin site looks so small. 
Here are the ones just above her knee. Sorry the picture is blurry, but she kept moving (she was getting anxious about seeing her pin sites and kept covering her face & leg with a towel).
Here are her top pin sites. I was surprised how small these look. I was expecting them to look worse because of how much drainage they had. But you can see that these have long scars from each pin site. I'm guessing from where they pulled.  All of the pin sites looked good and had no signs of infection. They all seem to be healing well and quickly. 
Here's a look at the incision where they put the rush rod in. It is smaller than I thought it would be. Dr. Nelson said it was about an inch, but I still pictured it to be much larger than that in my mind. It doesn't show up very well in this picture but there was some bruising by the incision area. 
Here's what her leg looked like after I wrapped it. I decided not to wrap the entire leg so that it could breathe. The pin sites were so small it didn't make much sense to cover all of her leg for four sites. Although over night her middle and bottom gauze did slide up and down, so maybe one long piece covering both sites would have made more sense. Maybe I'll try that tonight. You can notice the bend in her leg as she lays flat on the bed. It has a bend and a hard time straightening on its own. It looks like she's leaning on the side of the bed, but she wasn't.
Look at that smile. After all she went through, she still had a smile to give. And that's what makes her so special; her bravery, her ability to deal with tough things, her ability to move on and smile. 

Thursday, October 18, 2012

A new beginning

   Wow, it feels so good to be home. Yesterday was a long day, but much better than I thought it would be. First off thank you all for the well wishes, good thoughts, calls, messages, prayers and help. We couldn't have done it without you. 
Here's a rundown of our day yesterday.
3 am   I got up with Lidie and then I couldn't fall back to sleep after that. 
5 am   Josh and I got up and ready for the day.
6 am   Lidie and I left
6:22 am   Josh and Amaya leave home and head to the hospital.
6:30 am   I dropped off Lidie at a friends house for a play date. 
7 am     Josh and Amaya arrive at the hospital. 
7:03 am  I arrive at the hospital.
7:05 am  We walk through dark halls up to the pre-op area. We're led to a bed and start to get Amaya dressed. A nurse told us that there was a hospital wide power outage. She told us there was a possible 
delay because of the power outage (running on generators), but Amaya was first on the schedule so whatever time they start she'd still be first. 
7-8:30 am    We get Amaya dressed, signed in and ready. A Child Life specialist brought Amaya a board game. After we played Amaya watched Willy Wonka and the Chocolate Factory. Amaya played on the computer. The power came on then back off a couple of times. We wondered & worried if we would have to reschedule.
8:30 am   Dr. Nelson's resident went over paper work with us, answered questions, etc. He told us the surgery runs about 1-1 & 1/2 hours. After he left Amaya said she wasn't nervous anymore. A nurse said that non-emergency surgeries were on hold for now. At this point power was on in the area we were in but not throughout the hospital. 
9 am   Waiting for word on surgery. Amaya said, "Can I have my surgery now?" She was ready to get it off. We started seeing some activity; nurses, doctors and anesthesiologists. Someone said that the power was up and running and surgeries would be happening. They had to first check the humidity levels in the operating rooms before they could start. 
9:20 am We got the go ahead to operate.
9-10 am We met with the anesthesiologist, RN who will be helping in the OR. Anesthesiologist prescribed Amaya the pink drink to help calm her nerves. Dr. Nelson came to see Amaya. He said that she'll have a bandage on her leg (keep it on for three days), she'll have a small incision in her hip (where the rush rod will be inserted), the pin holes will close on their own, she'll have a month off from therapy (he said she might not need it at all), the risk of fracture at the pin sites is low, the rush rod mainly protects the new bone growth. 
10:10 am Amaya went back to surgery.
10:20 am After composing ourselves and taking a breath, we went downstairs to set up a pager so we get updates from the OR.
11:15 Still hadn't received an update so I asked at reception. They called OR #12. They said they were so busy they didn't have a chance to call. But that she was almost done. 
11:40 got page that she was done and back in recovery. We quickly went up to meet her. She was crying, shaking, but otherwise well. Dr. Nelson said she did great and. He got her knee to bend to 90 degrees then he pushed it and got her leg to 100 degrees. He asked if she's been getting to 90 at therapy because her leg was stiff. I told him that yes its stiff, but she works hard and then gets to 90. He said she can fully weight bear, that she has her fixator and Halloween costume in a bag. Josh shook his hand and I hugged him. I was at a loss for words and all I could mutter was "I'm so grateful." What else do you say to someone who has forever changed your child's life for the better? 
12-1 In recovery. Amaya was crying and shaking for a few minutes then asked for water (she was very thirsty). She said her pain was at a five so they gave her two doses of pain medication. She was confused and said she didn't have a fixator. Josh showed it to her in a bag and that she still said she never had one. She was calm within thirty minutes then fell asleep for an hour. 
1:15 She woke up with pain. She got more pain medication. The nurse noticed her drainage was bigger she marked it then watched it. Anesthesiologist came to check in on her. They said she did great during the surgery. 
1:50 Nurse called the doctor to look at the drainage.  
1:50-3 She napped intermittently, muttered that this was a bad nightmare, that she could see them putting it on. Her pain was minimal (a 2 or 3 but would pulse to a 5). Josh took prescriptions down to pharmacy (Tylenol w/codeine & antibiotic for 14 days). I was so tired and falling asleep while we waited.
2:40 Amaya was feeling good and coloring. It was nice to see her being herself. A few minutes later Dr. Nelson's resident came over to check her drainage. He agreed it was a lot. It hurt Amaya a lot while he moved the bandage to see where the leakage was coming from and she cried and screamed. He got a bigger bandage and put it over her top pins (the leakage was coming from there not the incision). He didn't want to remove her bandages because they were sterile from the OR. So he added to it. She had to turn on her side a bit so he could reach it well, which hurt her more. A child life specialist brought her a squeeze toy to help with the pain. Once he was done we were cleared to leave. 
4 pm Left the hospital. It was nice to be heading home. Josh took Amaya home and I went to pick up Lidie. 
6 pm We were all home and getting settled.
6-7:30 The girls had soup and pudding for dinner. Amaya rested on the couch. I took Lidie down to bed and we both fell asleep by 7:30 pm.
9 pm After watching a movie Josh and Amaya headed down to bed. 
During the night I woke up (by alarm) and gave Amaya her pain medication. Amaya had a good night and slept through the night pretty well. Today she's done pretty well. Her pain is under control and her drainage is minimal. Luckily she's use to drainage from her pins so she isn't too freaked out by it. But it does seem bloodier than the other drainage we've been seeing.  All in all we're doing good.
When we got back into the pre-op area. This is when Amaya got a bit nervous. 
They got her dressed and ready, but she was still a bit uneasy. 
Thankfully one of the Child Life specialists came and offered Amaya a board game to play with. She chose Candy land and we played that for awhile. That distracted her and got her mind of things.
After her game she decided to watch Willy Wonka. She's smiling "like Lidie does." Luckily Josh brought his laptop and a DVD, because the TVs weren't working in the pre-op area because of the power outage.
I took one last look at her leg with the fixator attached.
Josh and Amaya holding hands before the surgery. 
Dr. Nelson's resident came in and went over information with us then signed off on Amaya's leg. After he left she said, "now I'm not nervous anymore."
The anesthesiologist offered her some pink medicine to help calm her nerves. She really wanted it because she hated how she felt last time when she woke up and hoped this would help. She drank it quickly, but made a face because it tasted gross.
Amaya and Dr. Nelson just before she went back into surgery.
This is always the worst part, watching her get wheeled away. It doesn't ever seem to get easier. 
Fresh out of surgery. Its crazy to see the fixator NOT attached to her leg. We picked it up and it felt so heavy!
After surgery she was crying and shaking, which is always sad to see. After some pain medication and some TLC she calmed down in a few minutes then started to feel better.
Resting in recovery. If you notice she's wearing her heart ring. Once she had calmed down she asked Josh if she could have it back. She slept for about an hour.
The nurse asked to check her drainage and then we got a good look at her leg. She thought it was a cast, but its only an ACE bandage wrapped around gauze. The nurse was concerned that there was a lot of drainage so she asked the doctor to come check it out. Later she asked where the handle was to move her leg with (like the "handle" on the fixator). We explained that she doesn't need that anymore, she can use her leg muscles to move her leg.
After some more pain medication she kept saying silly things so I decided to try to videotape some. She doesn't say much in the video, but before and after she kept saying "this is the best pudding, I'm never going to stop eating it, I want breakfast and dinner, Look at this mom, the pudding has two cups, well I think so. I couldn't help smile and her. She kept bumping her face with the spoon and spilling. 
Amaya started to feel better and acting more like herself within a couple of hours. She drew on a wooden doll we brought. This help kill time while we waited for the doctor to check out her leg.
Transferring to the wheelchair was painful for her. But once in she did fine.
All smiles ready to go home.
A big thumbs up on her way out. She started to get nervous about transferring to the car, but she did fine. The owl she's holding is a little something she picked up in the gift shop on her way out. It's for her friend Rory who will be heading into her first surgery next week. Good luck Rory!
Once she got home she got home she got to see the goodies Dr. Nelson gave her. Her own real surgeons outfit to wear for Halloween. She's so excited! I have a feeling she'll be wearing this many times. Is he awesome or what?!
At home enjoying some some soup and pudding. She was happy to be home. She went potty (dad had to carry her in) ate, and watched TV.