amaya at lake

amaya at lake

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. 


  1. Just passing by to offer my support and encouragement to Amaya and her family. I recently finished my limb lengthening journey at age 15.

    It definitely gets harder before it gets easier, but I hope you can take comfort in the fact that Amaya will eventually reach the point when she really and truly doesn't even feel the fixator or the pins - as hard as that is to believe!

    Even at my age, the hardest part of the day (aside from physical therapy) was the showers; it can really sting the pin sites when you take the gauze off. Perhaps keeping Amaya focused on singing a song will keep her distracted?

    Are you able to get access to a therapy pool or program? Sometimes hospitals and rehab centers will let you use their pool, even if they don't offer programs for kids. Being able to weight-bear a bit in the water was wonderful and the most pain-free part of my days. Be sure to check with your doctor about this of course (my surgeon Dr. Paley has many of his pediatric patients take part in pool therapy). This is also good for preventing infections of the pin sites.

    After showers, let her/help her use a hair dryer (not too hot!) over her pin sites before you wrap them in gauze - it feels so nice!

    Keep going...the end result is so worth it!

    1. Thank you so much for reaching out to us. We really appreciate your advice, compassion and encouragement. Thank you for being honest, realistic and reminding us that in the end it will all be worth it. Please feel free to email me ( so that we could get to know you better. Thanks again!

      Amaya says, "thanks, I think I'm gonna try to do some of that, that you told me to do for support. Thank you for telling me that, I'm gonna try doing the blow dryer on the fixator, it sounds fun."