amaya at lake

amaya at lake

Saturday, March 31, 2012

Two centimeters

     I almost skipped posting tonight, to go to bed early and catch up on sleep, but realized that today is our twentieth day of turning the rod on Amaya's fixator and I couldn't skip such big news! That's exciting, because it means that Amaya has gained about two centimeters of length in her femur! We'll know for sure once we get x-rays done on Monday and see Dr.Nelson, but it's exciting nonetheless. Our goal during this lengthening is to gain eight centimeters (a little over three inches), so we're a fourth of the way down!
     My day started very early, when it was still dark, about five a.m. Lidie was crying in her sleep so I went into her room to check on her. I was so cold and decided to just climb under the covers with her. As I started to fall asleep, Josh came in and let me know Amaya was calling for me. So I walked down the hall to our room. She wanted me to rub her knee, she had some pain. Josh said, "she really loves you" he tried rubbing her knee, but she said, "don't touch me, I want my mom." Very sweet, but by the time I got in there she was asleep. She did mumble something in her sleep that I thought was funny and sweet, "I have love in my heart, sending it your way." She's so funny. I wish I knew what she was dreaming about.
     Today I had my book club and was looking forward to meeting with my friends to discuss the book, share good food, and watch the movie. We read Extremely Loud and Incredibly Close by Jonathan Safran Foer. It was a moving story that talks about a nine year old, Oskar (a somewhat quirky, maybe autistic child) and how he deals with his father's death. His father died on 9/11. I was very excited to read the book, but didn't get too far, since I didn't have a lot of time to read this past month. I did enjoy the movie a lot. It was such a touching, sad, moving story that brought all of us to tears. It was sad seeing this nine year old trying to make sense of things that even adults are struggling to make sense of. It made me think of Amaya and the many things that she's trying to sort out and make sense of. She's having a lot to deal with, process, and try to understand at a very young age; six. Even though she's very smart and mature for her age, she's still only six and some of her cognitive abilities aren't able to make sense of some things. The best we can do, is to help her as best we can to navigate through her thoughts, fears, emotions, and doubts.
    After I left I made a quick stop to the grocery store. It's so much quicker to go alone than to have the girls and a wheelchair to maneuver. We've been making decisions on whether something "needs" doing while we have the girls with us. Is it really worth the time, effort, and energy just to run in and grab something? Most of the time the answer is no. If I really need something I ask Josh to stop by on his way home from work. By the time I got home it was almost five o'clock. I missed the girls, and it was nice to see that even though they missed me, they had fun with dad. Lidie did say to me "I thought you were never coming back. I was just starting to love you." I'm not sure what that last part means, but it made me smile.
    I fed the girls, gave Lidie a bath then did physical therapy with Amaya. She did great with her therapy, even though it caused her some pain. After her therapy I gave her a shower, which she really didn't want to happen. She asked (several times) if we could skip the shower tonight and just do it tomorrow. In the shower she did fine. She asked if I could do it quick since she was cold and wanted it to be over soon, so I did. When I removed the gauze from the top pin sites, the gauze was stuck to her skin and pulled at it pretty badly. I could tell it hurt, and she cried quite a bit. I felt so bad, but even thought I did everything I could to minimize the pain, it still hurt her. When we got her down to bed she was still crying. We got her ready for bed pretty quickly. I stretched her calf and hamstring muscles before I screwed the bar in place, which seemed to help. She didn't cry as much and calmed down pretty quickly. However, it still took her an hour and fifteen minutes to fall asleep. Before she fell asleep, she cried a bit, asked if she could take the bar out, if she could take the fixator off over night, and said "I wish I could just walk up the stairs by myself." I tried to calm and reassure her as best as possible. Josh came in and between the two of us, we got her to sleep. It's nice to have his support and love.
    Thank you all for being a part of this journey with us.

Friday, March 30, 2012

Visiting school

     Last night when I went to bed Amaya started crying. She said her knee was really hurting and her feet felt numb (that feeling always scares her a bit). I gave her, her next dose of pain meds, rubbed her knee and feet and tried to calm her down. We're noticing that when it comes to night time it's part pain, part emotions. If we can get her calm and relaxed then she's able to deal with the pain better. She fell asleep after a few minutes and stayed out all night. But when she woke up this morning she complained of more pain. Today we stayed home for the morning and I was able to catch up on my chores. 
     Today was a teacher prep day for Amaya's teachers, they go back on track on Monday. We thought today would be a good time for her to go down and see them and prepare for returning to school. I made sure we did our physical therapy session before we left. Her hamstring muscle is still tight and causing her some pain. She did minimal complaining today, which was nice. Before we left she gave me a scare. I was loading the car up and when I came back in I saw her standing by Lidie all by herself. No walker, no wheelchair, nothing! Sheesh! I let her know that, that wasn't safe, she could easily lose her balance and fall. Standing with a walker is very different than standing alone. She finally agreed, "okay, mom, I won't do it." 
     When we got to the school so many people stopped to say hello, and talk with Amaya and Lidie. The girls loved the attention and kind words. Several people told Amaya that they were proud of her, and had been rooting for her. And they told Lidie that she was a great sister for helping Amaya so much. Amaya got to see her teachers, Mrs.Griessbach (her kindergarten teacher) and Ms.Gillespie (her first grade teacher. Amaya goes to first grade for several hours each day). They were both so kind and warm with the girls. Amaya's face light up when she saw them. They were impressed with how well she looked and how well she could maneuver in her wheelchair. We went into both classrooms to see if the wheelchair would fit at tables, and let Amaya practice moving about the classrooms. All the rooms are wheelchair accessible, so it was easy for her to wheel in and out of the rooms. She also practiced transferring out of her wheelchair and into a classroom chair. Amaya can either stay in her wheelchair or transfer out. I loved and appreciated how both teachers interacted with the girls, their willingness to help, and make accommodations for Amaya. Great teachers make things like this so much more easier to handle. Ms.Gillespie asked if I could come with Amaya on Monday and talk with her class about PFFD, the surgery Amaya had, the fixator and how they can help. They both wanted to make sure I talked with the class about safety, how to give Amaya space, how to help, to be careful not to bump her fixator, etc. I of course said yes to all those things. I'll be going wiht Amaya for the first few days. I'm glad they're both putting so much thought and planning into how to make this a smooth transition for their class and Amaya. We also practiced going to the bathroom. Even though their is a wheelchair accessible bathroom in the kids bathroom, since Amaya needs a "spotter" she'll be going into the nurses office to use the restroom. At least until she can start to bear weight on her left leg. Once she's able to do that then she can go in by herself. Before we left Amaya said "I want to come back tomorrow." I think going each day (she won't be going the entire day, because she'll have to leave for physical therapy each day) will be a good distraction, provide her brain some stimulation, and be a good social outlet.
    Once we left we took the girls to Chuck E. Cheese. Amaya spotted a mini gumball machine before her surgery and has been wanting to go and earn more tickets to buy it. While we were there it was nice to see the girls deciding to play games together. Amaya played in her wheelchair several games, and transferred out into several others. At one point a little girl (maybe three or four years old) was starring at Amaya. Very obviously, and following her and gawking at her. I kept trying to find the mother (she was busy playing a game with her son). Amaya got kind of bothered and hurt by the girl's stares. She said "she's just looking at me cause I'm weird." We explained its just because she's young and interested. But, Amaya doesn't like much attention so she wasn't too happy, either way. 
   Amaya's prescription was ready to be picked up today so we went over after Chuck E.Cheese.  When we pulled up Lidie yelled out "I wanna go to Children's hospital!" Of course she does, she didn't have to. I quickly ran in to the hospital (that's where the prescription was filled). As I entered I had an eerie feeling, almost like deja vu. My fast pace, reminded me of the many times I quickly walked in to go up and see Amaya after a long night apart from her. Seeing the families sitting in the waiting room reminded me of all the waiting Josh and I did, and how long those hours seemed. I was relieved, that we were no longer in the hospital, thankful that both girls are healthy, saddened by just how much she's been thru (we all have). I had that feeling; where you feel so many things at once that you can't decide which feeling or what to name it, well I felt that and remembered just how many times I had felt that in the past few weeks. 
     Once I picked up the prescription the lady told me that they don't put any flavoring in the medicines there at that pharmacy. I thought it was strange, but she did tell me that you can take a prescription into any chain pharmacy and that they would add it for a minimal cost. We stopped at a Rite Aid that was down the street. The pharmacy tech there added strawberry and watermelon flavor for $2.99. Three dollars is a pretty low price to pay for a child's comfort. Isn't that what Mary Poppin's sang about, "a spoonful of sugar, helps the medicine go down..." Anything to help alleviate Amaya's discomforts. 
    Oh, and remember that post we got from the fifteen year old on our blog? Well we found out its a girl. She lives in New York (which Amaya thinks is so cool!) and is Amaya's new "fixator friend." She's actually 18 (a typo that she was 15) and sent us a very nice email today. I'm excited to continue to correspond with her. Maybe she can be a pen pal for Amaya. I appreciate her willingness to help Amaya on her journey. She even sent Amaya a picture of herself with her fixators (she wore two at a time!). Amaya loved seeing the picture and putting a face to the words. Thanks again Alison, for reaching out to us, you don't know how much we appreciate it. 
     On the ride home, both girls fell asleep. Which reminded us that we have to make sure to be home early (even though it was only seven thirty) to make sure we have enough time to get Amaya ready for bed. We skipped her bath, but did do gauze changing (her top pins had a little blood and the middle ones had a reddish discharge). I miss those times when we could just carry her in to her bed and she'd stay asleep. She took about forty five minutes to go back to sleep. She cried, and said she couldn't handle the knee pain or the bar tonight. But I got her calm with massages, and singing. She doesn't know how strong she is or how much she can handle, how much she already has. But, I know.

During our physical therapy at home. Amaya sometimes uses her right leg to push on her left leg to get the bends we need. 

Here's Amaya with her kindergarten teacher, Mrs. Griessbach. Can't believe I got her with her eyes closed. But, you can see just how big of a smile she puts on Amaya's face.

Here's Amaya with her First grade teacher, Ms. Gillespie. It's hard to see in the picture, but Amaya has her arm wrapped around Ms.Gillespie's shoulder. It's very sweet!

I love Lidie's smile in this picture. She's riding a horse at Chuck E. Cheese.

Amaya was playing the Mario Kart game. She was able to transfer out of her wheelchair and onto the seat by herself. 

I love how intense she looks! She just might have her mother's competitive edge. 

Thursday, March 29, 2012

Cancelations and phone calls (this is our 100th blog post!) yay!

     Yesterday we had two messages on our phone. One was from Marylou. She wanted to know if we had a home health nurse coming to see Amaya to help care for her wounds. She said they needed to know so they could process the request for the gauze. Apparently their fighting it. Either way, I appreciate all her help. The second one was from the physical therapy department calling to cancel our appointment for today. I called first thing this morning to see if someone else could see Amaya today. I spent twenty minutes on the phone, most of that time was spent being on hold. My new routine is to put the phone on speaker, set it on the counter and clean until someone gets on the line to help me. They were all booked for today, so unfortunately Amaya wouldn't be having physical therapy today. I did ask for them to add a session at the end of our appointments so that we don't loose a day even if we lost it today. Since we weren't going, I knew that meant we would have to have a session here at home. Which I don't mind, even though Amaya does whine way more for me than she does for the therapists.
     Amaya was complaining of a lot of knee pain this today so I gave her the morning off and planned our physical therapy for after lunch. I gave her her pain meds but noticed that she was almost out. I called the doctors office to get a new prescription ordered. But was referred back to the pharmacy. Twenty minutes later I had a request in. Since we have to wait for the order to be faxed over to Dr.Nelson's office, approved, then faxed back to the pharmacy, it'll probably be a day or so before its ready to pick up. She should have enough to last us a couple of days. She kept complaining of hip and knee pain today. We tried a warm compress on her hip which helped her a lot. She kept it on most of the day. For the foot pain I gave her lots of foot rubs. Lidie's allergies seemed to be bothering her a lot today so I started her on homeopathic allergy medicine and Tylenol. Maybe that's why she was so cranky yesterday. She's been snugly and a bit clingy today too.
   Today Amaya asked me if she would still be in her wheelchair during Halloween. I said that I wasn't sure. She would still have her fixator, but might be walking around on her own by then. She said "Well if I am still in my wheelchair for Halloween I'll be a devil with a broken leg." I'm glad that she can still make plans and not let things get her down. She got to look at her incision a bit more today and seemed to be okay with it. She started comparing scars with me, and looking at her other ones too. It's crazy how many scars those sweet little legs have. While Amaya was on the couch Lidie leaned over and cuddled Amaya's leg and kissed her foot. It was so sweet.
     When we did physical therapy Amaya asked if she could sit in a regular chair because "it makes me feel like I don't have a fixator." I agreed, because it wouldn't affect our stretches. I set the timer for thirty minutes so we had a visual guide to keep us on track. I did a mix of the exercises they give us for homework plus some of the stretches that she does at physical therapy with her therapists. I wish we had that goniometer to measure her knee, its hard to guess how far we're bending her knee. But I could tell it was at least past ninety degrees, so I was happy with that. Since she's been having a hard time with the pain under her knee (her hamstring) I decided to work on those a while too. Those stretches were especially painful for her and she was in tears. I felt so bad, but just had to keep on going. We also practiced walking with her walker around the house (Cassie had her trying to work on walking with her leg straight. Amaya tends to turn her left leg in).
   After her therapy she painted some Easter eggs and then decided she wanted to draw a map of our house. I asked her what made her want to do that and she said that her teacher Ms. Gillespie did it in class one day and she's been wanting to try it for quite some time now. I got another call from the physical therapy department canceling our appointment for tomorrow. I was a bit frustrated, but I can't let the small stuff get me down. We'll deal with it. Josh was encouraging and said "you got it covered!" I'm glad he's confident in my abilities. So for the next three days she'll be doing her therapy with me. Before Josh came home he let me know not to prepare any dinner. His co-worker Yvette made us rice, beans and cheese enchiladas. I was relieved and happy (cheese enchiladas are my favorite). It's been so nice and helpful when we receive meals. It saves us from one more thing to do (or think about). Thank you Yvette, dinner was delicious!
      Shower time went pretty well tonight. Just the "normal" amount of pain and crying. It's sad but, some things just hurt. There's no getting away from it. But, Amaya is learning, and so are we, how to deal with it. She had a hard time transitioning out of the shower and down to bed. She said she was scared Josh would drop her. It was such a far fetched fear. We just gave her a few minutes to gather herself and calm down. Once Josh brought her down she did good. We tried using the blow dryer tonight and she said she did like that. So now it's plugged in next to my nightstand. My nightstand is nighttime central, where we get her ready for bed. On my nightstand there's the bar we lock into her fixator at night, the Allen wrench to turn the fixator, the Velcro strap thing that we put on her toes to keep the toes pointed up, gauze, tape, bandages, scissors, a cup of water, a bottle of hand sanitizer, lotion and oil to rub on her feet, baby wipes and tissues. It's quite a set up.
     I stretched her leg again before bed, focusing on the hamstring muscles (the one under the leg). She said it hurt and I could tell it was tight. But, locking the bar in place was pretty easy. I spread a hot pad across her knee, leg and hip. She said it felt good. It took her almost an hour and a half to go to sleep. This is also becoming a new "normal" for bedtime. Its sad, because she's in pain, has some discomfort, is tired, frustrated and agitated. She said "this is the hardest part about having a fixator. Trying to have it straight." I reminded her that a few weeks ago, bending it was. I have a feeling it'll go back and forth for awhile. When she's close to falling asleep, the pain gets her rilled up again. She'll say "I'm almost asleep, but it just hurts." Then gets upset that she's not asleep, that it hurts, etc. I rub her knee and hamstring muscles as best as I can with a fixator in my way. Josh reminded her to do the breathing that Amy Wheeler taught her to do and that helped calm her down. Singing to her helps calm and distract her too. Thankfully once she's asleep the pain is bearable (she sleeps thru the night, with minimal groans and tossing and turning).  It's such a process to get her to sleep. By the end I'm sleepy, my hands are tired and my body is sore from whatever position I'm in to massage her. But just before she fell asleep she uttered, "mom, you're doing a good job. You're helping me fall asleep." And that makes it all worth while.

I started noticing these funny marks on our toilet seat last week. Then I figured out what their from, the fixator. When Amaya goes potty the fixator scratches the seat. So now the middle and left side are all scratched up.

Amaya sitting in a "regular" chair to paint eggs at the table. 

Here's one of the eggs she painted. She used a toothbrush to give it a "speckled" look. And if you're wondering where we got the eggs from (since we don't eat any), Gandma Lilli hollowed out a dozen for us to paint. 

Here's Amaya sitting in her shower chair. Dad's trying to get her out, but she was having a "moment." I tried getting a picture of her smiling, but that just wasn't how she was feeling tonight. Just trying to show a realistic picture of our day; the good, the bad and the ugly. It's harder for me to see her upset like this than to see "yucky" pin sites, or incisions. 

Wednesday, March 28, 2012

Sweet & sassy Lidie

I'm a bit tired tonight and still have dishes to do so I think I'll try doing bullets instead of long paragraphs.

  • Early this morning Amaya thought she saw blood on her incision on her hip. I told her that no, they were just scratches from her nails. She turned to Lidie and asked "Lidie, does it look gross?" Lidie looked then said, "nope." Amaya is still adjusting to looking at that scar, she thinks it looks weird.

  • Lidie said she wanted to go to a park soon. We agreed that would be fun. Then she added, "a wheelchair park where you can play Amaya." What a sweet & thoughtful sister. I wish such a thing existed!

  • Physical therapy; today Amaya got to 107 degrees! That's her highest number yet! She said it hurt, but did it anyway. She also was able to hold her leg up four times for a count to ten each time. That's a huge improvement in muscle strength since last week!

  • In the parking lot Lidie threw a major fit, way worse than last week. It's kinda funny, she was mad because a lady was using the potty she wanted to use. But, it stopped being funny when she started screaming, yelling and throwing shoes. And the stares didn't help much either. 

  • We went to Grandma Lilli's house; watched Monsters Inc. (still one of Amaya's favorites, but I'm not sure why we don't own that yet), baked cupcakes, fed birds, and drank sparkling apple cider. While we were there Amaya told me "mom, you're the best mom I could ever have." Totally made my day. 

  • As we were leaving Lidie threw another fit, not as bad, but just as draining. 

  • At home we ate dinner (thankfully Grandma Lilli had prepared a delicious meal for us. All we had to do was heat it up). 

  • Amaya got herself off the couch into her walker and into the bathroom all by herslef. She even had to walk sideways in the walker the last few steps to fit into our bathroom. It was pretty impressive. 

  • Josh and Amaya opened a package from our dear friend Coleen in Chicago. She made the girls blankets! Thank you so much Coleen for the sweet gifts, and card.

  • As I gave Lidie a bath Amaya wanted to try walking to her in her walker. But on her way she fell. Not fully onto the ground, but more like a baby deer, with her legs spread apart. So sad! It scared her (and us) and hurt her legs a bit. We decided to just take her down to bed after that and skipped her bath.

  • While I changed Amaya's gauze Lidie watched. She said "awe, let me kiss your booboo's." Amaya told her "don't look at them Lidie they're gross."But Lidie didn't' care. She's not fazed by any of this. 

  • Today was our last day of antibiotics. Hooray! One less medication!

  • Another highlight of the day; we got a message on our blog (yesterday's post) from a fifteen year old (not sure if it's a boy or girl) giving encouragement, advice, ideas of things to try, and empathy. Thank you so much! What a sweet, kind message. We appreciate you reaching out. Amaya loves that you "actually know what she's feeling."

  • Bed time is getting tough. Amaya can't just lay down and go to sleep. We have to lock the bar in place, which basically is locking her leg in a straigh, stretching position. The stretch isn't comfortable and hurts her. Each night it's getting harder and harder for her to adjust to it, to calm down, to deal with the pain and then fall asleep. Tonight it was over an hour.

  • Amaya holding her leg up for a count of ten.

    That's the walker that Amaya has been using at physical therapy (the one at home looks just like it). Today she used that carpet balance thing to work on balance and strenght. The blue table is where she does her stretches.

    Amaya posing with her sparkling cider. Lidie was too busy drinking to pose.

    We've been taping up the cards we get from people. Coleen, yours will be going up next. We all love looking at them for extra encouragement. Thank you all!

    Amaya cuddling her blanket from Colleen. "It's so soft! I love the green!"Lidie loved that they both got one!

    Tuesday, March 27, 2012

    Good service vs. bad service

          Today on the way to physical therapy I got a text from our friend Lisa who recently went to the Science Center in Irvine. She said they have a Star Wars display and it talked about how Darth Vader needed prosthetics to help him live. Also she said the exhibit focused on how medicine and technology work together. She sent me some pictures from their trip. One was of a fixator on a skeleton. I was excited to see it and share it with Amaya. She loved looking at the picture and wasn't freaked out by it at all. She thought it was pretty neat. Thanks Lisa for thinking of us!  We just might be having to take a trip out there soon.
         At physical therapy Amaya was able to get her knee bent to 106 degrees quite easily. I was so happy! I took a picture of the goniometer (that's the ruler that they use to measure the degrees in Amaya's knee) to show you what it looks like. It's hard describing to people what it looks like and how it works. I asked Cassie what it was called and if she knew where we could get one. She told me what it was called and then said that she thought she had one at home that we could have. She said she sometimes gets them at conferences. It would be so nice to have one to use at the house when we do our stretches with Amaya so we can see just how much we're bending and how much more we need to push it.
         After physical therapy we were on a mission to get some gauze for Amaya. We change it everyday(we go thru quite a bit). We have a prescription for it but we haven't needed it since they gave us some at our last appointment before we left. We still have some left, but I didn't want to wait until we ran out. We tried before our physical therapy appointment to get it filled at Rite Aid, but they said they don't do that there and that we need to go to a medical supply store. We went to one down the street, but it was closed. Then we headed to San Bernardino to another store that I knew of. The staff were somewhat helpful, they did have what we needed but didn't accept insurance for it. I asked how much the gauze was and they said a box of 50 would be almost nine dollars.I asked if they could help direct me somewhere else, they sent me down the block to another store. This store was on a busy street, so you had to park in the back. There were no disabled parking spots (which I thought was weird for a medical supply store), but we did fine. We entered the store and realized that we were in the back of the store, but needed to be in the front of the store. I tried to go up front but found several steps in my way. So frustrating! So I left Amaya at the top of the stairs (with her brakes on and her sister keeping her company). A lady came over to "help" me. When I showed her our prescription she said they don't take that kind of insurance. But said they do carry what I need if I wanted to check them out. I said sure, that I'd like to compare prices from the last store. She showed me two types of 4x4 gauze that they had. One was the kind we are using now and one was "sponge like" she said. I said I'd probably stick to what were using now. She said the other kind was cheaper and that I should just use that. I asked if it worked the same way (does it open up so that I can wrap it around the pins). But, she cut me off and said that "they don't open, they're squares, 4x4 squares." That lady ticked me off! She was rude, condescending and mean. I politely replied, that "they do open, everyday when I use them." She kept insisting that "no, they don't." Another woman yelled over "to help" by telling me that I need to just buy them because insurances wont pay for gauze, its not covered. She said that's what she does all day, so she knows. Silly me, I believed her. Even though I was mad at the rude lady I decided to buy two boxes to make sure we had some for Amaya until I could find out if for sure our insurance wouldn't cover them and then another place to buy them from.
       After we left there we headed home, worn out. When I got home I got the girls settled (fed, med.s, massaged Amaya's foot, etc). Then made some calls. First I called our insurance to find out if gauze was covered and where to buy it from and then second about getting Amaya in to see a counselor. The people I talked to were helpful. I got the referral set up for Amaya to see a counselor (just need to make an appointment) and found out that gauze should be covered, but to double check with our clinic where to get it from. I called Marylou (I needed to return her call from yesterday).   She said that all x-rays are in place for Amaya when she goes to see Dr.Nelson from now on. I asked her about the gauze and she said she wasn't sure if it was approved, but that we'd submit the request and then go from there. She was a breath of fresh air. After dealing with okay, mediocre and bad service it was so nice to have exceptional service. Three hours later Marylou called me back to tell me that yes the gauze would be covered. Not only that, but she was submitting the request now so that it would be delivered to our house. She made sure to find out exactly what we needed and how many and to order enough to last us the nine months. I was surprised and happy and relieved. It really makes a difference when people are helpful, it really does.

    This is the picture of the fixator at the science center. This is a different type of fixator, but it's neat to see it in the bone.

    Before physical therapy Amaya gave Lidie part of her "Best Friends" necklace. Lidie loves it! What a sweet gift.

    This is what a goniometer looks like. I had it positioned to a 106 degrees so you can have a visual for how far Amaya has been bending her knee.

    Here's Amaya sliding down the ramp in the play room after climbing up it. 

    I had Amaya work on her homework today. This was a writing assignment she had and this is what she wrote. Not the best way to spend a vacation. 

    While I was making dinner Amaya called me over to "look at something cool!" She (for the first time) put her knee down (her fixator is what's touching the couch, not her actual knee) on the couch. She said it didn't hurt at all. Guess this means where getting into the faze where the fixator doesn't bother her so much. Hopefully.  
        While we were watching a movie we felt a shake, earthquake was my first though. My second thought was, how am I suppose to get Amaya to duck and cover. Guess I better start brainstorming that, especially since we do live in southern California. There were two small earthquakes about fifteen miles away. Nothing big, just enough to get you to plan and prepare for a big one. 
          On another note, shower and gauze changing were great tonight (well until the very end). She tried laughing instead of screaming and that seemed to work great. It lightened her mood and helped me concentrate. Downstairs when I was changing her gauze I noticed that her bandage over her hip incision was wet inside and needed to be changed. This is when it got a bit rough. She asked us to leave it on, but I explained that it wasn't a good idea. She started to peel it off, then I just pulled it off. Ouch! The incision looks good, sorta. It's not infected or anything, its just big and looks painful (or that it was painful, not necessarily now) and kind of pink (mostly where the actual bandage was). We told her we were going to leave it without a bandage, she wasn't too happy about that, but agreed. Hopefully the pink goes away and the area will continue to heal and look good. She fell asleep quickly tonight. Rubbing the bottom of her knee is very helpful now. She wants us rubbing her feet during the day and knee at night.  
        Thanks again for reading and sorry for the ramblings. 

    Monday, March 26, 2012

    Some rest for mom

         Today I woke up feeling so tired and a bit sick to my stomach. Lidie had a tummy bug yesterday so I hope I didn't get it too. Thankfully Josh decided to stay home (he has some sick days stored up and non-work days that he has some flexibility in using as well, which is really nice). I was able to sleep in for an extra hour and a half, and it felt great. When I woke up the girls were upstairs and had already eaten. Amaya was watching TV and Lidie was playing dolls. When I came up I gave Amaya her medicine then got her ready for her physical therapy appointment. Josh started shoveling the driveway, thankfully we didn't get a lot of snow last night. I still felt tired so I asked Josh if he would take Amaya to physical therapy and I would stay home with Lidie. This is the first session I've missed since she started, and it felt weird not going.
         It felt so good to stay home and catch up on my reading. My book club meets this weekend and I haven't finished my book yet. I'm sure they'll "let me off the hook" since I've been a tad busy. But, I really enjoy the book and would love to finish it before then.
         After physical therapy Josh and Amaya went to Target to replenish her gum supply (her new favorite thing). It was nice having some one on one time with Lidie. I haven't had any quality time with her since the surgery, and she needs it too, just as much as Amaya. We played dolls, ate soup, watched a show cuddled on the couch, and ate vegan jello. She's a really funny kid and it's nice to see her growing up. These past few weeks have demanded a lot from her. She's had to be patient, kind, gentle, mature, and adjust to a new schedule and routine. She's also had to wait and learn to keep busy while I take care of Amaya. For a little sister, she's been having to act like a big sister. It's funny because she's the same age that Amaya was when Lidie was born. Amaya became a big sister and had to do some of the same things that are now required of Lidie. Especially when Lidie had to be admitted into the NICU for three days (when she was a week old). It's nice to see both girls be able to step up to the new expectations, responsibilities and be able to adapt so well. They're amazing girls! It's easy to forget that they're only six and three years old. They sure do make me proud.
         After Josh brought Amaya home he had to go in to work for an IEP after school. What a dedicated teacher he is! I'm so thankful to be on this journey with him, he's an amazing person, husband, father and teacher. Josh and Amaya reported that she did great at physical therapy and was able to get her knee bent to 105 degrees. I was a bit worried since her knee was so stiff yesterday. I guess all that bending yesterday paid off.
         Josh and Amaya made a goal of having a "five star day" where she cooperates during her therapies, medications, turns, shower and gauze changing. I could tell a huge difference today because she was very helpful and cooperative. Today would have been a five star day except for the screaming during her shower. But she came close and is making it her goal to have one tomorrow. Another goal she set for herself was to reach 111 degrees on her knee bends. I'm not sure that's possible since 106 is the highest we've had since we left the hospital, but its "always good to have high goals" says dad. She did have 120 degrees the day after surgery, so maybe it's possible. We'll see.   
         Today she said two interesting things to me. One, she asked if her fixator was real or if it was a dream. I told her that it was real, all of it. It's funny because she has been saying that and wondering about that ever since her surgery. It's sad to think that some of this doesn't make sense to her. Josh and I think maybe we should have her talk with a counselor. She responds well with outside help so maybe that would be a good option for her. I'll make some calls tomorrow and see if we can schedule an appointment for her. The second thing was when she asked me if you could see all the way into her body to her bones and guts thru the pin holes. I told her that no you can't. I told her that they weren't holes, like normal holes. I told her they were pin sites, not pin holes. I described what they looked like and offered her to see the pictures I took. She decided against seeing the pictures, but did seem calmer and understood the pin sites a bit better. Poor kid, no wonder they freak her out so much, she thinks you can see inside her body. That would bother me too.  But, her willingness to talk about it gives me hope that she's dealing with and starting to process it all. Once again, she's only six. Some things just don't make sense.
       We realized that next Monday she goes back on track at school. It's crazy to think that we're three weeks out of surgery and by then it'll be four. As of now we're planning for her to go. She won't be there all day since she has physical therapy appointments each day, so hopefully she won't be too tired at the end of the day. She really enjoys school and we think going would be a positive thing for her. On another note, I got a call from Marylou today letting me know that she's processed the forms necessary for Amaya to get her x-rays at her upcoming appointments with Dr. Nelson. That's great! Not only did Marylou take care of this upcoming Monday's appointment but the next six appointments as well (see what I mean when I say she's great?!). One less thing to worry about, thank you Marylou!

    Our latest friend to get a fixator. I have a feeling many toys will get them around here.

    Sunday, March 25, 2012

    Sunday, Sunday

         Today we just stayed home and relaxed. We asked Amaya if she wanted to go anywhere, but she said she'd prefer to stay home and relax (secretly we did too). And so that's what we did. We rested, slept in to 8:30, ate, watched movies, colored, and played games. Even though the plan is to relax, we know that that doesn't exclude us form all our fixator related tasks; turn the bar, give med.'s, get Amaya some time in the wheelchair, shower and change the gauze and physical therapy. So as we relaxed, we had a looming to do list. We incorporated our time in the wheelchair with games, drawing and eating dinner. We alternated being up doing things, then laying on the couch watching a movie. Even when Amaya is on the couch resting we still keep her knee bent as much as possible and her heel off the couch. Her heel is almost healed, but looks like a bloody blister.
         After lunch (she still has a very small appetite) and her next dose of medication I did a half hour physical therapy session with her. I could tell her knee muscles were working, but tight as well. I pushed her hard (holding bends to the count of twenty and forty and pushing the knee in more and more). She cried quite a bit, and finally was getting so loud and whiny that I told her that I should record her so that I could show her therapists. She quickly pulled it together and stopped. It's so funny how kids will be so cooperative with others but then give their parents a hard time. That's not to say that it isn't painful for her, its just that she would never yell or whine at her physical therapists.
         She did some whining before her bath too. She even tried claiming her tummy hurt so that she could skip the shower. I told her "no" we have to take care of her and this is how we do it. I tried turning the chair so that it would face the other way and so that her fixator would be closer to me but the chair didn't fit. Oh well, at least I tried. The top pins were once again the hardest to get to. The middle ones had some gunk and extra skin stuck on the pins that I tried to remove. I got some of it, but its so hard to do. The pin sites are so close together that its hard to get in between them to clean them. And she was feeling it and I didn't want to cause her too much pain. I did get a better picture of that pin site today and its down below. I think we're starting to get a rhythm down. That plus I work quickly (I try to get it over with as quick as possible for her). After her shower Josh carries her down stairs and puts her on our bed. I have her lay on her side so that I can have easy access to the pins so that I can wrap new gauze on the pins.
         At bedtime she had a hard time falling asleep (each night seems to be getting tougher for her). She feels uncomfortable and in pain. She begs to let us bend her knee and to remove the bar (that locks the bottom of her fixator to her top part). The reason she has to do that is that with the bar in it forces her leg to be straight and stretching all the muscles under her leg. As the lengthening continues this will get harder. As of today we've been lengthening for fourteen days, which means we've gained about fourteen millimeters (one centimeter and four millimeters). Our goal is to reach eight centimeters.          
          Wish us luck, keep the good thoughts and prayers coming because it's only going to get tougher from here on out. Oh, I almost forgot to mention my highlight of the day; being able to hold Amaya on my lap for the first time since her surgery (way back on March 6th). She asked if I could cuddle her and I offered to try having her sit on my lap and she jumped at the chance. It was wonderful holding her and hugging her. Definitely not the same as sitting next to her or cuddling beside her. I could feel her fixator pushing in on me and was a bit timid to bump it or hurt her.

    This was during my PT with her today. She was able to hold her leg up for the count of ten several times. I can feel that leg getting stronger! 

    Here's a better picture of the middle set of pins (the ones right above her knee). See how close they are, compared to the other two sets of pins? You can see some of that "gunk" on the pins. 

    Saturday, March 24, 2012

    Baby shower blues

         Today I went to an old friends baby shower. This was one of the first times I had been away from the girls since we've been home from the hospital (two weeks ago). On my way I felt kind of weird being away from the girls; one part relaxed, one part nervous. Similar to when you leave your baby for the first time. It's strange as I drove I got a bit teary eyed, for no particular reason. It hit me that when I'm with the girls, especially Amaya I try to "keep it together" so they don't feed off of my energy, but now that I was alone I could and had to deal with all the thoughts, emotions and stress from the last few days and weeks. It felt good to just release. I remembered a compliment an old boss of mine gave me a long time ago. She said that I was like a duck. Sitting on the water they look so calm and relaxed, but below water they're paddling like crazy. She said that's how I was when I worked with kids, and that when things were hectic I still looked so calm. I always remember that compliment because it meant so much to me. And I feel that it applies to me now. No matter how nuts things are with Amaya or how much I'm paddling like crazy, I try to look calm, for their sake. Trust me, this isn't always true, Josh can tell you of many times when I loose my cool.
        After that I felt good, even happy and proud. As I arrived at the baby shower I realized that I was lost. I drove around for an hour, which I really didn't even mind that much. I tried to just enjoy the "break." But then I started to text people for help and when a friend let me know that I was in the wrong city, I started crying and sobbing. I felt so overwhelmed and defeated. I texted Josh "Oh my gawd! I'm gonna lose it." At that moment getting lost was just too much too bear. I  caught myself thinking, "Why is this bothering me? I don't let everything else that's going on bother me like this. Why this?" All the other things right now, I can handle, I have too. But, anything extra feels like just too much. I'm spending all my energy and focus and time on the things required each day (taking care of the girls) that I don't have energy or time for any other drama (even something small like getting lost). Thankfully Josh called me and calmed me, comforted me and reassured me. After talking with him, I felt fine. Then went to the shower and had a wonderful time, seeing old friends, and meeting new ones. It was great, I love baby showers.
       When I got back home everyone was doing good and did great without me. It's nice to know that dad can hold down the fort while I'm gone. The house was a bit measier than I would have had it, but other than that, things were great. And Josh and Amaya surprised me with a creation; a fixator for one of Amaya's Barbies. It looks so good. Here's a couple pictures.

    Here's her Barbie with the fixator. They made it out of the packaging materials that came with Amaya's journey girls doll. We've been saving them since her love party for such an occasion.

    Here's a close up. I'm amazed by the detail! They made sure to have three "pin site" areas, gauze and the bandage on her hip. It's pretty cool.
         Later my sister in law and her two kids came over to visit. This is the first time they've seen Amaya since she's been home. She loved the company, and so did Lidie. They played and had fun for hours. Amaya got to hold her baby cousin Kailei, which she loved. It certainly put a smile on her face! Amaya showed Myhkiah her fixator, and explained what it was for and how it worked. Later he tried sitting in her wheelchair and riding around. Amaya walked in her walker for a bit and impresssed her aunt Lacy and grandma. Both of them were very encouraing and supportive of us. It's always nice to hear words of praise and encouragement.
        After they left Lidie fell asleep quickly, withing five minutes. She was worn out from all the fun playing! After I put Lidie down I changed Amaya's gauze and did her nightime routine to prep for bed. Gauze changing wasn't too bad. I did take some pictures and I'm posting them below. If you don't want to see them then don't look down (some of you might not want to see them and that's okay). They're not too bad, in fact the pin sites all look the best they have. Hopefully showing them will allow you to see and understand what her pin sites look like, why they bother her and what we're dealing with. Thanks again for reading.
    Here's Amaya with cousin Kailei. 

    Here's Amaya's shin. She offered to help remove the gauze tonight, but then decided not to.

    These are the pin sites in her shin. This is pretty much how these pins have looked since we came home. The doctor said they look good and that she doesn't need gauze on them, but she insists on it so that she doesn't have to see them. Out of sight, out of mind. She thinks the dark parts (the scabs) are holes into her leg (I guess they kind of are, but she thinks they're open holes).

    These are the middle pins. They're right above her knee. There's three pins here as well, but they're hard to see because the picture is kind of blurry (sorry) and the angle that I took it from. Also, these pins are very close together, unlike the other two pin sites. These are a little red and have a little "gunk" on them, but not too bad. When she first had her fixator attached, these are the pins that had the most bleeding and drainage. 

    This is the set of pins highest on her thigh. This is the first time that we see any type of scab on the highest pin (the one on the left). Maybe its healing? These are the pins that bother her the most (when she moves, in the shower, when we change the gauze, etc.) and she really doesn't like looking at these.

    This is the same area once I apply new gauze. I add several layers so that it's all covered and she doesn't get any peaks at the pin sites. 

    Fun, frantic Friday

        Well today we had many fun and some frantic moments. I'm starting to think that both are going to be a part of our days from now on; our new "normal." We got up a little later than planned and had to quickly get ready for our 8:45 physical therapy appointment. Getting ready in a short time is usually hectic enough, but add in all the extra details that a fixator requires (turn the rod on the fixator, pack rod, give medications, bring medication for day, unscrew bar from night) plus all the normal stuff takes longer because Amaya moves so much slower. Once we were on the road I realized we would make it just a few minutes late to our appointment. Except that when we got there both girls had to go potty. Ten minutes later we checked in and then went back for Amaya's physical therapy session.
         Today Amaya hit her highest number on her knee since we left the hospital; 106! At the hospital Amaya was able to bend her knee to 120 degrees but this is the most we've gotten since then. Its funny because when Melissa begins to measure her knee Amaya always "cheats" by lifting her bottom off the table. But, she's like her mama, an honest cheat and always confesses. "oops, my bum, bum isn't down."Another great thing Amaya was able to do today, for the first time, was hold her left leg up without any help. I posted a picture of it below, but I'm not sure it does it justice. You could really see her muscles working.
         After our session we went shopping at Clark's for some vegan jello mix and then to Target for a baby shower gift. Each time we parked I was so thankful for the extra space that a disabled parking spot gives us. It's hard wrangling a wheelchair, Amaya and a busy three year old Lidie in a parking lot full of crazy people (and even thought they see us coming in a wheelchair, they don't move aside). After our shopping we met tia Amanda at the two dollar movie theater in Moreno Valley to watch The Chipmunks Chipwrecked. The girls had been wanting to see it for quite some time. So for two dollars it was a nice treat after a hectic day and week. This was our first movie since Amaya's been home form the hospital and it went well. Before we got there she asked if she could still sit in the regular seats, but I said we'd have to wait and see if we could transfer with no problems. We walked into the theater after the movie started and just kept Amaya in her wheelchair and we sat in the back in the disabled section. It worked out great. But as we left Lidie decided to keep me on my toes and remind me that I have a three year old on my hands and threw a pretty big fit. Full of yelling, crying, screaming and not getting into her car seat. Oh, it was great. But, considering everything she's been dealing with and how much we've been requiring and expecting of her, I guess a fit is allowed every once in a while. Thankfully she pulled it together quickly. The ride home was nice; we drove thru Reche Canyon and saw donkeys, goats, horses, and chickens. It was fun, but made us want to go to the zoo soon! Our girls love the zoo! We've had passes to the San Diego Zoo several years, but didn't this year. Amaya said that she thinks the zoo would be a great place to go with a fixator, hopefully we can take the girls in the near future.  On the ride home Amaya got a little scared because she said it felt like her legs were going numb. She started to cry saying "I can't feel my legs. What's wrong with my legs?" This has been happening often. It seems like car rides bring it on the most. We have her pump her toes up and down, but what helps the most is me rubbing her foot. So I've been doing a lot of one handed driving and one handed foot massaging. Today we added a blanket under her left knee to straighten the leg out a bit and that seemed to help as well. Lately I've been doing a lot of foot rubbing. Each night before bed I rub Amaya's left foot until she falls asleep.
        Once we got home the girls relaxed. They watched Zookeeper, played Barbies, had dinner and then I gave Amaya a shower while Dad and Lidie played dolls in the play room.  Amaya's shower and gauze changing were so much easier today. Mostly because of the lawn chair we bought. It puts her up at a better level for me to work with. It was so much easier to get the gauze off of the pin sites. The bottom three pins look great; just minor scabs around the pins. The three above her knee are still having some drainage throughout the day so when I remove the gauze it pulls on her skin a bit. I did notice some skin that was stuck on the pins. I tried to remove it as best I could without hurting Amaya too much. The top three are in the worst shape. All three look kind of pink (not quite red) and have some amount of puss on them. The highest one still looks like a hole and is the size of a dime. While I remove the gauze I'm hosing the area with our shower head and that seems to help loosen the gauze, distract Amaya from the pain, and helps any loose skin come off. From start to finish it took us about thirty minutes and I'm beginning to feel more comfortable with the whole process. She did stall for about ten minutes prior and did scream throughout the process. It's funny because when she isn't crying out in pain she yells out "I'm not in pain, just scared" or "that didn't really hurt, I'm okay." She still has quite a bit of fear and anxiety about the whole process, especially seeing the pins in her leg. But considering it's only our first week doing it, I'd say she's handling it all quite well, especially for a six year old.

    Can you see that Amaya is holding her own leg up (using her own muscles)! Melissa was very impressed with Amaya's strength.

    This is the scooter (I think it may be one of the first scooters ever made) that Lidie rides at physical therapy. It's hard to get a picture of her because she's constantly zooming by and trying to do flips off of it. The bus in the background is also a favorite of hers.

    Here's Amaya's shower chair. I wasn't too crazy about the color, but it was her choice. It fits perfectly in the tub and was only ten dollars!

         I want to thank all of you who have been calling, sending cards, writing letters and messages to us all as individuals and as a family. This is definitely a tough journey, but we're grateful for all the love we keep receiving. And please don't take it personally if it takes us awhile to get back to you, we're just kind of busy and living in survival mode. Some moments were surviving and others were thriving, but at the end of the day we are all exhausted. Thankfully the girls go to bed early so Josh and I can have some down time before we go to bed. Thanks again for reading and being a part of our journey, its nice knowing we're not alone. 

    Thursday, March 22, 2012

    Another good day

         When we got to physical therapy today Amaya said she noticed a girl in pink starring at her fixator. I asked if it was a girl or a woman and she said a girl, but that she doesn't like people starring at it. I tried to explain that kids have never seen one and don't know what to think of them. I said sometimes kids are concerned and want to know that your okay.  She said, "but mom, grown ups stare at me more than kids do." I wasn't sure how to respond to that. Amaya hates being stared at, and I don't blame her. I notice when adults gawk, stare, whisper and do double takes at her. I wish they didn't, but we can't control other people.
         Once we got back with Lisa she said that we had to do some "dirty work" aka bending. She said Melissa wasn't happy with the numbers she got yesterday (97degrees). So today we had to focus on bending the knee more. Instead of holding Amaya's knee bent for a count of ten she held them for a count of forty. When she measured the knee it was at 104 degrees, yay! I love that when Lisa mentioned the tough work to Amaya, Amaya responded with an "okay." Yesterday she told Melissa "I like physical therapy because it helps me." Lisa said we needed to make sure to bend the knee later on in the day and often at home to make sure we keep the flexibility. She also suggested we make a board (like a furniture mover) for Amaya to use around the house to practice bending her knee on. It's a great way to build strength in the knee.
         After our session we went to Walmart to look for a beach chair for Amaya to use when she takes a bath. It's funny when I got the girls out and started to head into the store I realized I couldn't grab a shopping cart and put Lidie in it. I went back to the car and got a reusable shopping bag. As we shopped we put our stuff in the bag. It worked great! Amaya asked, "mom, are you sure no one is going to think we're stealing this stuff?" As we shopped we were pleasantly surprised to see Marylou in one of the isles. She was on her lunch break. I was so happy to see her. The girls and I had just been talking about her earlier and making plans to deliver a thank you card to her soon. Amaya showed her her fixator and we thanked her again for all her help in making sure Amaya gets the treatment she needs (she's the referral coordinator at the clinic where Amaya's pediatrician is). I told her that we often remind Amaya that she may be the one with the fixator but she has many people on her "team" working hard to make this all happen. Marylou is one of those key people. We are so grateful for her help and kindness. It made my day to see her and be able to hug her and thank her. Her smile and helpfulness always encourage me. After we said goodbye to her we went and "tried on" some chairs for Amaya. Amaya sat in a couple and decided which was the most comfortable one for her. Leaving the store I was holding Lidie's hand, carrying a beach chair, pushing Amaya's wheelchair and balancing my purse and our bag of purchases on the back of the wheelchair. I'm sure we looked pretty silly, at least I did.
         Later we spent some time at Tia Amanda's house. Amaya decided she wanted to use her walker there. She did great, but had a scare, when the wheels got caught on the floor and she almost fell. Thankfully, I was right behind her and caught her. Next we went to visit and play with the girls' cousins. The girls had such a good time being kids; they played Polly pockets, cars, a little on the Wii, ate a yummy snack, played London bridge and ring around the Rosie and watched the cat play with a lizard. When we first go there Lily and Bobby didn't even seem to notice Amaya's fixator, only that she was in a wheelchair. Later Amaya showed it to them and they gently touched it. It's neat to see kids instinctively know that they need to be gentle. Lily was so sweet and helpful to Amaya and helped push her around the house. At one point I overheard Lily tell Amaya "now I know that if you yell, it's serious, cause you could be really hurt, so I'll help you." It was very cute. As the kids were watching the cat play with a lizard (strange I know) the youngest cousin Daniel (who's only one and a half) bumped into Amaya's fixator. It wasn't rough, but Amaya asked him to be gentle because of the fixator. We reminded her that he's young and doesn't understand (he was napping while Lily and Bobby saw the fixator earlier). Amaya lifted her dress to show it to him and his reaction was sweet, and curious. He looked at her leg in shock and tried to get our attention to show it to us. He tried so hard in his toddler talk to explain what he felt and saw. I wished I could have read his mind at that moment, but you could almost see the thoughts in his mind "wait, what is going on, what is that?! Do you guys see that!? Is she okay?! Is that an owie?!" Amaya's tia Lore gave Amaya a big hug and let her know that she's been keeping up with the blog and is proud of  her; its always nice to hear.   I enjoyed relaxing, talking with my cousins (being able to be honest with our struggles and share laughs)  and  hearing the kids play.
         By the time we got home it was time to get ready for bed. Before I changed Amaya's gauze (we skipped the shower because she was so tired) dad talked with her and reminded her that yelling was not okay. He told her that she could express her fears, pain and dislike in words. She agreed and as I began I could tell a huge improvement from the last two days. She did yell and cry a bit, but only as the gauze pulled at her skin. For the most part she played her DS and listened to me sing "I'm almost done, here I go, almost done." She was laying on her side again and that gave me such good access to the pins and gauze. We were done so quickly she could hardly believe it.
         The day went by quickly and was full of good times. Thanks again Lore and Amanda for hanging out with us today, we had a great time.

    The girls playing Polly pockets with cousin Lily.

    The kids all watching the cat play with the lizard.

    Outside of Walmart we got to see some race cars. The girls were impressed. Then a man in a wheelchair came up to Amaya and asked her if she wanted to race. She said no thank you. Later she asked me, "do you think if we would have raced lots of people would have come to watch?" She's a funny kid.

    Wednesday, March 21, 2012

    A proud momma

          Tonight I'm so tired, but just can't go to sleep without reporting on our day. I was tired when I woke up this morning, and even more so now. So I apologize in advance for any typos or grammar mistakes, because I'm so tired and will probably miss some.
          I'll stick to the highlights of the day. At physical therapy Amaya got to use the red scooter that she used last year. She sits on her bottom and uses her knees to push herself forward. This was a lot of hard work, but she pushed herself. She asked Melissa if she could go up the hill in the hall ( I love that she always challenges herself). And sure enough she did it! She did some bending of her knee on the table. Getting over 95 degrees was tough today. Melissa held Amaya's knee bent to help stretch the knee a bit more. Amaya was in pain and cried thru it. I love seeing her push thru the pain, enduring it and then as soon as its done smiling a big smile. I wish you could all be there to see her push herself and then smile and be her sweet self. I was so proud of her as I watched her. The way she handles the challenges that she deals with day in and day out, it's pretty amazing.
         After physical therapy we had a play date with some close family friends. It was so nice to let the girls "just be kids." The other kids were two and four years old and were so sweet, gentle and kind with Amaya. It's neat to see how sweet and accepting kids can be. They touched her fixator, asked what it was called, and then a minute later moved on the business of being kids; playing. The girls got to play, laugh, share snacks and make snow ice cream with Abby, Alex, Seraphine, Grandpa Dave and Grammy Diane. I'm so thankful for good friends and family that distract us from the craziness that comes with life with a fixator. The kids made plans to meet up again for some "fort building."
         After we got home we had to start preparing for bed. Lidie got her bath first while Amaya ate dinner then Josh took Lidie down to read, get Jammie's on and wrestle while I gave Amaya her shower. There were more tears with tonight's shower, but not as many as yesterday. I only allowed Amaya ten minutes to whine, stall, and transition into the shower. I've been counting to ten (telling her that at the count of ten its time to take medicine, or go potty, or get in the tub,etc.) and that seems to help keep her focused and cut our time down. She kept telling me that I didn't understand how much she didn't like seeing her pins or showering. I told her that I believed her. But just like she has a job to do (physical therapy) , so do I (to take care of her). The shower went quick but taking the gauze gave her some panic and pain. The gauze tugs at her scabs a bit and that seems to send her into a panic. Also her bandage over her incision on her hip was almost off and she could feel it pulling at her skin (and that freaked her out a bit too). Most of the bandage came off in the shower (she didn't even notice) and the rest I took off while I put the new gauze on. There was some definite screaming, but once it was done she calmed down rather quickly. It's so hard to stay focused on my job while she's screaming in my face. Even though I know she's okay, I know that there is some level of pain, discomfort and fear. I have to separate my emotions from that moment so that I can finish what I'm doing. Later I'll vent or release the stress. Tonight we tried applying new gauze while she layed on her side and that worked great! It was so much easier to weave the gauze between her leg and the fixator. Once the bandage was off from her hip's incision she asked me to apply a new bandage because seeing it bothered her. Once again "out of sight our of mind" really works with Amaya. I knew she didn't need it on there, but figured it wouldn't hurt to have a new one on. I've learned to pick my battles. The incision looked bigger that it had before, it's about four to five inches long. Seeing it hurt me, it's hard to explain. But, I think at that moment seeing how big it was and knowing just how much work was done to her hip saddened me. I hate that my sweet little Amaya has had to endure so much physical pain. One of the things she's said over the last few days is "I didn't ask for this. I didn't want a short leg. I didn't want this surgery." At that moment I felt all that pain too. I love her just the way she is, short leg and all. And I wouldn't want to change her one bit, but seeing her have to put up with so much grief is hard. I took a deep breath and kept on going. I sang (in the "just keep swimming" way that Dory from Nemo did) "I'm almost done." It seemed to help her calm down a bit. As soon as I was done she said, "thank you mom, I'm so sorry I freaked out on you." What a sweet kid. Josh and I switched again. He finished getting her ready for bed while I put Lidie down. After Lidie was asleep I shed some tears; it feels so good to let them out and release all that stress.
         Josh said he talked with her about staying calm and not screaming. He couldn't believe how she acted. He reminded her that it's okay to be nervous or scared, but that screaming like that was not okay. It was a bit better than yesterday, so we'll see what tomorrow brings.

    This was Amaya's bed sore on her heel last week.

    This is it today. It's getting better, but still bothering her a bit.

    Amaya using the scooter down the hall. You can see her knee "working" hard to pull herself forward.

    Amaya working her way up the "hill."

    What comes up, must come down. I love seeing the joy that makes up our therapy sessions.

    Laying on the table getting her knee measured. Is that a smile on her face?

    Melissa's trying to get the knee bent as much as possible and get a good measurement. You can tell by Amaya's face that its hurting her.

    It's great to see her knee bend so much, but sad to see her in pain.

    At the home Amaya asked if she could practice walking in her walker while Lidie took a bath. I love her motivation and drive; she is resilient!

    Tuesday, March 20, 2012

    First bath

         Today I woke up and knew what I had to do; give Amaya her first bath. After yesterday's tough gauze changing and pin site cleaning I knew I had to be prepared (mentally and emotionally). I knew we had a busy day and would have to do her bath before physical therapy (at two today). I gave Amaya some space to eat breakfast, watch a movie and play. I used this time to sweep, mop, do laundry, clean and disinfect the tub then prepared my tools for the bath (gauze, towels, antibacterial soap, and new clothes). One thing we've learned these past few weeks is that you can't just do something; there has to be a plan and preparation for a successful transition.  I began by talking with her; I explained what I was going to do, how I would do it and reminded her why we had to do it ( to prevent infection). She began crying. She said she was very scared and nervous. She kept crying and stalling (asking questions, telling me she didn't want to do this, asking if we could postpone it, asking if a sponge bath would do, saying she didn't like her fixator). Each time I tried to touch her she started to freak out. After thirty five minutes I knew I just had to do it. I told her I loved her, what I would do and said I would be starting at the count of ten. I reminded her that I needed her to cooperate so that we didn't have any accidents getting in and out of the tub. She began crying more and as I offered some last comfort I began removing the gauze on the bottom pin sites. It came off easily. She was pleasantly surprised how quick it went; this calmed her a bit and allowed her to cooperate a bit more for the second set of pins. I unwrapped those then tried to do the last three. The highest pins had lots of drainage overnight so the gauze was stuck to her leg. As I started to remove the gauze I knew it would hurt her too much to just pull it off like that. She was in tears and yelling out in pain. I told her that I wouldn't do anything until we soaked it in the tub (I remembered reading in another PFFD blog that this helped them remove gauze). Since she can't stand yet I had her sit on the floor of the tub while I cleaned her off. She was very nervous to see the pin sites, and was holding a washcloth over the sites so that she wouldn't have to see them. The shower went by quickly, after she was cleaned I washed the fixator and pin sites (put antibacterial soap on the sites then used the water to wash the areas; using a removable shower head was so helpful) then I tried to remove that gauze again. It was a lot easier now that it had soaked, but because of the position she was in the tub, and how close the fixator is to her thigh it was hard to unwrap that last piece of gauze. It was painful for her and very nerve racking for me. She started crying and asking for her dad and wishing he was here with her ( I did too). As soon as it was off I lifted her up and sat her in her wheelchair (there was a towel layed out there to keep it dry). I wrapped a second towel around her then took her to the living room. I dried her off then began to dress her. Then she asked if she could play her DS while I put the gauze on. What a great idea! I agreed because it was such a good distraction. As I wrapped the gauze on the lower pins she began to relax more. I did the one above her knee next then started on the upper thigh. The yucky pin site was still very yucky. This site was the hardest to wrap; because of how sensitive the area was, and how close the fixator is to her thigh. I asked her to lift her thigh up a bit so that I could squeeze the gauze between the thigh and fixator. Her lifting helped a lot. As soon as I finished I could see her body relax. I was flushed, stressed and worn out. Then in her sweet voice she said, "Mom, you did such a good job, you're better than that lady was. You were so gentle. You should be a nurse." I just smiled and felt so filled with love. I said "are you sure? Because you were freaking out so much I thought I was doing a terrible job." She smiled and said "no, you're good." She spent thirty five minutes stalling and it only took forty minutes to change the gauze, bathe her and dress her. We talked and I reminded her that it would get easier each day. After that she had time to recuperate, eat lunch and watch a show before we left.
        Today we started her on her antibiotics and are continuing her tylenol with codeine. She's been asking for the pain medication pretty regularly. I wonder if the pin sites are bothering her, it's hard to say. She points to her hip area but, I can't tell  if it's the irritated pin site, the incision on her hip, or the actual hip that's causing her pain.
         Today was the first time we used our disabled parking placard. It came in handy and made getting out of the car so much easier! I'm so glad we got one. Even Amaya noticed the difference; she asked how we got to park in such a big space. I explained what disabled parking spots were and she thought they were a great idea, I agree. Today at physical therapy Amaya did great! She worked with Lisa (the therapist we saw last Thursday) again. Lisa was impressed with Amaya. She said she could feel the hamstring muscles working as she would lift and lower her leg. Amaya was able, for the first time, to hold her left leg up off the table. We were so impressed. She wasn't able to hold it long enough for me to take a picture, but I was so happy to see it. I clarified with Lisa that Amaya can't fully bear weight yet. She had Amaya practice using the walker. Amaya would put her left leg down without putting her weight on it. It served mostly to help give her balance. Lisa was also impressed with how well Amaya is transferring in and out of her wheelchair. Lisa also got Amaya to lay on her right side and move her left hip. I suggested that we try laying her in that position when we need to change the gauze(we have easy access to the pins and the fixator doesn't push up against her skin), Amaya said she'd be willing to try it.
         Thank you for all your love and support. Today we came home to some cards and flowers on our doorstep, picked up meals from my aunt's house, had several messages on our phone as well as on Facebook. It is so nice knowing that we have so many people rooting for us. Although we have some tough times ahead, I'm realizing that they are only moments. They pass and then we move on. Our days are filled up with many good, calm, loving, normal moments as well, and for those we are so grateful.

    Lidie sneaking in a ride in the wheelchair while Amaya's resting on the couch.

    Lidie at physical therapy; she's doing great!

    Amaya walking with the walker. 

    My tia's (aunts) cooking some meals for us. We're so grateful for their tasty food.

    My uncle's "testing" the food.