amaya at lake

amaya at lake

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. 


  1. You are one amazing momma, and Amaya is one brave little girl! Thank you for sharing these experiences it truly touches my heart and makes me grateful every day for my blessings. I pray you will continue to have strength to care for her and your family through such a difficult time. I know my heart breaks anytime my children feel sick or YUCKY and I can't take their pain away I can only imagine how you feel watching her go through this time in her life. Thank heavens for modern medicine but it is quite the journey.

  2. Kristine, thank you for your love and empathy.