amaya at lake

amaya at lake

Tuesday, April 17, 2012

Third follow up

      Today we had our third follow up with Dr. Nelson. Tomorrow is six weeks post surgery, and its hard to believe how much has happened in such a short time.  Josh started state testing with his students today and wasn't able to leave for our appointment, so today I went by myself. We got there a few minutes early and got a snack from the cafeteria. We saw Dr.Nelson and two of the assisting surgeons with him eating lunch. Amaya thinks its cool that they're vegetarians too. When we went by to go potty, Dr.Jaeger smiled and waved at her and she waved back. We're so thankful for such kind, compassionate doctors who care about Amaya. They've made it so much easier for her and us. We had a small glitch with the authorization for Amaya's x-ray and it took over two hours to fix it. It was a bit frustrating at times, but Amaya did fine waiting. Thankfully Marilou at Beaver was able to fax over the forms to prove that we had the authorizations in place. Thankfully it was all sorted out and hopefully we can avoid this at our upcoming appointments.

Here are the highlights from our appointment:
  1. We mentioned the numbness Amaya has been feeling in her toes to Dr. Nelson. He said we'll keep an eye on it. We're still doing the stretches Melissa suggested we do, and they're starting to help. 
  2. He said the hip pain she's been feeling the past couple of days is normal. It could be the result of pressure from the lengthening.
  3. We're going to continue to lock her bar in during the day to help with the stretching of her calf and hamstring muscles.
  4. He said the pin sites are doing good and he's happy that we haven't had any infections or problems. He said to just keep doing what we're doing (showering, cleaning with antibacterial soap and changing the gauze every day). We don't need to use any ointments or creams (many people ask us about that). He said the bottom pins don't need gauze anymore, but the top two sites will continue to leak because the muscles near them get worked so much. I told him we need to order some gauze, and he recommended sterile gauze, which cost a little bit more, but is worth it to help prevent infections. Since we're only putting gauze on the bottom pins for Amaya's sake (she doesn't like looking at them) those don't have to be sterile. 
  5. We asked about using ibuprofen, but Dr. Nelson said no, to just stick to Tylenol. He said the ibuprofen would actually be bad (I forgot the exact details, but he said that it would get in the way of the new bone healing).
  6. Since she's doing so well we're going to continue with four turns a day. But if she loses significant range of motion in her knee or her nerve pain becomes too much then we can drop down to three turns a day. He said he would leave that up to our judgement until we see him next. Four turns a day makes the lengthening time go by faster.
  7. We're halfway done with the lengthening part of our journey! Woohoo! Amaya's x-ray showed that she's gained 35.1mm (3.5 cm or 1.38 inches)! Our goal is three inches and we're just under one and a half inches.
  8. After looking at her x-ray Dr. Nelson said that Amaya's hip is healing well and she can begin to fully weight bear. He said for the next two weeks she can begin walking, but only the length of a room then use the wheelchair to rest. Then after her next appointment she can have free range. At physical therapy she'll begin to fully bear weight as well.
  9. Dr.Nelson said Amaya is doing great and wishes other patients could see her. He also said that we're doing a great job, which means a lot coming from him (sometimes we're not sure what were doing or if we're doing it well). He asked if this was harder than I thought it would be. I said no (reading all those blogs helped prepare me for what was to come), but that I was really dreading the daily pin site cleaning. Thankfully we aren't having to do that. There are tough times, mostly watching Amaya having to endure pain. But it's all been bearable, and worthwhile. 
  10. Now that Amaya can start to bear weight she'll be walking on both legs. And this will be the first time in her life that she'll be able to wear shoes without a lift on them. Prior to the lengthening she had a one and a half inch lift, and since we've gained that much new bone we don't need a lift on her shoes! Wow! Is that amazing or what?! Six and a half years later, it's pretty awesome. Dr.Nelson said that we don't need to worry about getting a lift put on her shoes until after were done lengthening.
  11. Before we left we had them give us a note for school to excuse her from all the school she's missing (coming late and leaving early). Dr.Nelson asked Amaya how her friends reacted to her fixator. She said that she showed it to them and let them touch it and now they're not scared of it. He asked if they gave her special treatment and she said yes. I also asked about the difference between PFFD and CSF (congenital short femur). Dr. Nelson said that they were interchangeable terms for the same condition. 
     I know that's a lot of information to process, so if you have any questions feel free to ask. On the way home Amaya said she was so tired and ready for bed. She said "I just want to be at home sweet home" and "I miss Lidie so much." After dinner I gave her a quick shower. During her shower she asked if she could take the gauze off herself. I said yes, then she did. The middle one stuck a little so I had to help her. But, all in all she did great. I told her she could be my gauze assistant, but she reminded me that she's going to be a doctor like Dr. Nelson instead. While I put Lidie to bed Josh got Amaya ready for bed. Tonight is the first time she wanted to sleep in her own room by herself. She's been falling asleep rather quickly lately (tonight within two minutes) but then wakes up later complaining of numbness and pain. Then it takes about twenty minutes to an hour to calm her down, take her potty, give her more chamomile tea, rub her toes and massage her knee. The whole process takes about an hour and a half, but that's why we start it so early. She's usually asleep by eight or eight thirty. Throughout the night she still moans and groans and sometimes cries. Sometimes it reminds us of when she was a newborn, with the constant waking and lack of sleep.
     Here's some additional information from today. While she worked at physical therapy Kim and Melissa reminded Amaya to keep an eye out for "crazy" ankles. When she's pulling herself on the scooter and walking she turns her ankles inward or outward. While pulling herself up the hill Kim offered Amaya  a way to "cheat." She said that Amaya could use her hand to lift up her leg to bend it. But, Amaya said that she'll do half with her hand and half with her leg. Amaya said, "It hurts a lot, but I can still do it." I love her drive, determination and her ability to work thru the pain. When they started the bends in her knee she only got 91 at first, but then pushed on to 96, then to 101!
    After therapy I took Amaya to school. She missed most of last week due to pain and trouble with her fixator. When she got to class her friends were so happy to see her and kept telling her that they missed her.  She had missed them too, and was happy to be there. She worked on an art project with a friend and I read her a book (Lidie was on a play date so I was able to stay today). During recess she played "wheelchair hop scotch," tag and talked with her friends. When they lined up to go inside her teacher asked the class if they could subtract to find out how many kids were missing today. There were lots of guesses, but Amaya got it right. Her teacher asked her how she figured it out and she said, "I just used my brain before I talked." I thought that was pretty funny and wise at the same time. During class time her teacher set a timer so that every twenty minutes Amaya could stretch her legs, bend and straighten her leg and rub her knee. We think this will help her tolerate her pain better when she's in school. I appreciate Ms.Griessbach's help and thoughtfulness.

This is the newest stretch we'll be doing for homework to help stretch out her hip.

Kim measuring Amaya's bend.

Sorry this one is so blurry. But you can still see that Amaya is working hard to get up that hill.

Amaya doing "wheelchair hop scotch"at school.

Here she is in class during rug time. 

Sleeping on the way to her appointment. She's been propping her leg up in the car to help with leg pain. She's been so tired lately. 

After waiting for over two hours and being in pain and discomfort, she still had a smile! 

Amaya getting her x-rays done.

Here's her x-ray. You can see the new bone in the gap between the pieces of femur bone.

Here's some pictures from the weekend.
This is what we put on our pillows to remind us to do the last turn on Amaya's fixator before bed. 

Amaya looking at some of the art at the skateboard art exhibit at the Museum at CSUSB. Amaya was so excited to go to the exhibit, that even though her tummy was a bit upset she went anyway. This was our first outing on a Saturday since the surgery.

Amaya and uncle Alfie. I can't believe she spotted him out of the crowd even though she hasn't seen him in a couple of years. 

Here's all of us with Alfie. 

Lidie practicing her "skateboard jumps." She can't wait to learn how to skateboard.

Lidie decided to wear the stickers that she and Amaya drew on. 

Amaya was so tired she took two naps in the car.

      Before bed on Sunday night Amaya asked "Do you know how fun it is to have you guys around?" She was crying in pain. So I asked, "Is it fun?" Then she said, "Yeah. I couldn't do it without you guys. If you were gone for a night, I wouldn't be able to sleep or nothing." Obviously, she didn't mean the pain was fun, but having us with her on this journey is. I'm just grateful that I can lighten her load a bit and make things easier for her. 

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