Visit to urgent care for her hip

    This morning Amaya and I took a trip to urgent care to see if we could get some answers about her hip pain. Thankfully urgent care wasn't busy and we didn't have a long wait. When we went back in to see the doctor he had never heard of PFFD, which I kind of expected. He was surprised and a bit shocked that Amaya had had a lengthening surgery. Then asked if "she was fixed now." Ugh. He was also amazed to hear that she would be having another lengthening and that it would be with an internal fixator. He asked me how that would work and seemed kind of impressed by it all. At this point I wished we were at Dr. Nelson's. Clearly not all doctors can help with such a specialized condition. When he reviewed the x-rays with us he said that he didn't see any breaks in the hip or femur. He also said that the top of the femur is in place and wasn't dislocated right now. He said the rod was "in place." I asked if it could be loose and if that's what could be causing her pain, but he said "I don't know. I'd have to go in there and see if I could move it to tell you that." His advice was to "follow up with ortho." He didn't look at her hip at all, or touch the area. Even though I told him that she cringes in pain when you touch the area where the top of the rush rod is. 

   So, we got some info: there are no visible breaks or anything. But that's about it. No advice on what to do for pain or discomfort or anything. Just a helpful "follow up with ortho." Wow. I'm clearly frustrated. And sad to know that Amaya's pain and discomfort will continue. As soon as we got home I got on the phone with Dr. Nelson's office and with the referral department. I've been trying to schedule our next follow up with Dr. Nelson for over a month now. They still do not have a referral for Amaya and will not schedule an appointment without one. Ugh. Marilou (our referral coordinator) has been helping us for the past month trying to get one processed and sent over. I finally spoke to a very helpful woman at Loma Linda who gave me her personal email. She said that if I can email her the referral today she will enter it today. She said that they are a week behind processing the faxed referrals and that they received over a thousand on Monday (the most recent day that Amaya's referral was faxed over). I try to be patient and understanding that they have a lot of work to do. But, I'm trying to help my child. And now with her pain there's a bit more urgency to get this appointment scheduled. 

   The good thing is that Amaya's pain isn't debilitating. She's able to deal with it. But part of me wishes she didn't have to just grin and bear it. A big part of me! And who wouldn't? I want that for anyone in pain. I want some help, some resolution. Obviously something is bothering her, something isn't "quite right." I just wish we knew what and how to treat it. 

   Thank you all for your care and concern. The messages and concern mean a lot to us. Thank you. We are also very grateful to our friend Juli who took Lidie with her to her sons tumbling class and let her play with them this morning so that I could focus on Amaya. We're so fortunate to have friends with us on this sometimes difficult journey. 

Amaya waiting for her x-rays to develop.

Cheesy grin.

The doctor was so impressed by Amaya's x-rays and her rod. He said, "Wow, that thing is huge! Have you seen that?" I just smiled and bit my tongue. He printed out three pictures for us to "put in our scrapbook." Here's the front view of today's x-ray. The zipper is from her shorts. They made her lower her pants to her knees.

Here's another angle. With her left knee bent and her leg turned. She said it hurts her hip when she bends her knee.

Here's another look from the side.

This is her x-ray from November. This was the first x-ray we saw after her fixator was removed. Is it just me or does it look like the rod is turned in a different direction. See how the hook part is turned in another direction. Look at today's x-ray front view, the one from November and the one from January. Do you see it too? In todays it also looks like the rod is out of the femur more than before. Well at least that's what it looks like to me. I don't know. After looking at and comparing so many x-rays I get confused. Clearly I'm no Dr. Nelson. 

This is her x-ray from January. The front view on the left and a side view on the right. One thing I noticed for sure was that in the x-rays from today I couldn't see the pin holes in the femur at all. And it was hard to tell where the new bone was. It just looked like a solid bone. You can see the difference when you compare the x-rays. Its crazy to see how much its healed in five months.