amaya at lake

amaya at lake

Monday, July 9, 2012

First follow-up after lengthening

The girls welcoming their newest cousin, Nixon Parker Jimenez who was born yesterday at a whopping 9 lbs. 13 oz. How my sister-in-law delivered him in such a short time I'll never know. But, we're so excited to welcome him into the family and love him already.
Since we stayed late at the hospital last night waiting for Nixon's arrival we had to postpone showers until this morning. During her shower this morning Amaya's gauze was stuck on all pin sites again. Here's the middle pins; it looks like the gauze is just sitting there, but its stuck on and wasn't coming off. It took about twenty tear filled minutes to get it off. At one point she even said, "oh, man. Why do I have to wear this fixator? This is the worst shower ever." I feel so bad for her; just when we thought showers were handled and under control she has a rough time. The nice thing is, is that once the shower was over so were the tears; she bounced back so quickly. 
Here's the bottom pins. These had never been an issue at all, until the past few days. They have been bothering Amaya, have been draining, and have been sticking to the gauze. 
As I put new gauze on I noticed that those pins were a bit red, swollen and sensitive. I took a picture to show Melissa and Dr. Nelson. Dr. Nelson started Amaya on antibiotics for ten days. He said that it would actually be pretty easy to take the pin out, but that Amaya might not care for that. I agreed. He looked at the x-ray and said that the pin looked okay so it would be okay to leave in. He said that the only reason the bottom pins and hardware are there is so that we can lock the bar at night (to stretch her muscles). He said we still need to lock the bar, because in some cases when they removed it too early the patients had complications with tightens in the muscles. He said it wasn't as critical now for her to wear it every night; so if we skipped a night it wasn't a big deal (we haven't skipped any nights up to this point). 
At therapy Amaya gave Melissa a photo collage of her and Lidie. It was the one we gave out at her love party and she really wanted to give it to her. Melissa appreciated it and gave Amaya a hug. Melissa started by massaging Amaya's knee and stretching the muscles. Melissa handed me a new prescription for continued therapy. We took it with us to our doctor appointment and had Dr. Nelson sign it then we'll return it to Melissa tomorrow. Hopefully this will help speed up the process to get the referral processed and approved. 
Amaya rode the bike today and did the big loop. Towards the end she did so well and had so much momentum and speed. She was very proud of herself and had a big smile on her face. Here's a short video of her zooming by.
Melissa had her step over the balance beam a few times. 
Then she walked on it; I'm always surprised that she doesn't fall off.
Amaya did twenty leg presses on the total gym machine. Melissa puts her hand on Amaya's knee to help keep Amaya's knee and leg straight; she tends to lean at an angle. 
     Next she did some lunges. Melissa had her do a big stretch and Amaya could really feel it. Amaya's knee was at 50 degrees to start but with a few scoots she was at 60, not bad for a Monday. Bends seemed a bit tough today, so I was quite surprised to find out that Amaya was able to get to 100 degrees today! That's very good for a Monday! I guess all our homework paid off.
     The new referral we got is for the same therapy: five times a week for six weeks. Melissa said it was better to have it written that way in case we needed it. She said that if Amaya does okay with missing two days next week and then three the following week she can drop down to three times a week. She said its important to get to 90 everyday; so on the days we're going to miss we need to still do our PT homework. 
    After therapy we had our first appointment with Dr. Nelson since we stopped lengthening five weeks ago. Amaya had new x-rays taken; they took quite a few pictures. And even a full leg view as she stood.  We only had to wait about an hour and a half to see Dr. Nelson today, but like I told the mom in the waiting room, "he's worth the wait." When the nurse took us back she told Amaya that she was the "princess of orthopedics" since she comes so often and they know her around there for being so sweet and working so hard. Amaya smiled. When we got back we first saw Dr. Mandry. She was very excited about Amaya's x-ray. She looked at Amaya's bottom pins and said they looked a bit red, and recommended starting on antibiotics. When Dr. Nelson came in the girls gave him the cards they made him. Lidie scribbled and drew him a "cumulonimbus cloud." Amaya thanked him for his help, making her bone grow and being "super nice." Then he asked her about her summer plans. She told him that she's been swimming and that she'll be going swimming tomorrow and going on vacation soon. I always appreciate when he makes time to talk to her directly. I know it helps her feel more comfortable with him and trust him to do what's best for her. He said that he would be checking out the blog for pictures and videos of all the cool things she does. He told her that "he's been hearing good things about her." 
    When Dr. Nelson looked at her x-ray he seemed pretty happy and said that the new bone looked "super white." We asked how much longer she has to wear the fixator for (we get asked this quite often). He said that when you've gained 8 cm the formula is usually six months after lengthening is complete. He also said that she will probably have it off by then since she's doing so well. He said it could be as early as four months after lengthening (possibly around October). Then he asked how therapy was going. We told him that she's been in the hundreds, had 100 today and that 106 was her highest number yet. Dr.Nelson and Dr. Mandry were both happy with that. He said that we don't need to try to get to 120 or anything, that as long as she's getting 90 everyday she's fine. I told him that she has her own personal goal of getting to at least 110, he said that she might be setting a new record. He said that he thought she was ready to drop down to three days a week of therapy. I mentioned our concern of her tight knee and muscles. But he said that if she's in the 100's she's fine. He said that she won't loose what she's gained or go back; that's nice to know. I asked how long it takes for her muscles to grow and catch up to the bone growth. He said that it takes about a year. He said that most of the growth occurred while she was lengthening, but that it continues to grow and stretch. He said that the muscles will continue to be tight until they fully stretch. He said that its like pulling on a rubber band; once you pull on it and stretch it it still wants to tighten up a bit. So its a gradual process. I asked about the sound that we sometimes hear when Amaya bends her knee, its kind of a crunching sound. It's hard to tell if its the fixator or her knee, Dr. Nelson said its most likely her knee, and that that was normal. I was kind of hoping he'd say it was the fixator. 
 
Here's the top part of the full length x-ray. I didn't get a picture of her whole legs. But it was neat to see. I think I overheard Dr. Nelson say there was only a 5 mm difference between the two legs, but I'm not positive. Lidie thought this x-ray was so funny, "Amaya, I can see your butt." (giggle). 
Here's a close up of the new bone. Dr. Nelson said that the top pins all look really good. 
We have a follow up appointment in five weeks and I'm excited to see how her bone will grow in those five weeks.

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