amaya at lake

amaya at lake

Thursday, November 17, 2011

Appointment with Dr. Nelson

     Well I was fine all day until about lunch time, that's when the butterflies in my stomach started acting up. I tried hard to stay calm so the girls wouldn't pick up on my nervous energy. We got ready and left to drop of Lidie at her aunt Hilary's house. It was nice not having to worry about keeping Lidie entertained during the appointment (thanks again Hilary).
     On the drive over to the orthopedic office Amaya told me that she was nervous about the appointment. She was worried that she would need another surgery on her knee (since it has been popping and hurting her). I calmed her by reminding her that it made no sense to worry about things we didn't know about or have control over (advice I need to follow) and that if in fact she did need another surgery, that we would handle it and she would be okay.
     When we got there and checked in I noticed a new sign that said that wait times varied by doctor and are unavoidable but, to please be patient ( I wondered if that meant we would have a long wait). Waiting is just part of the deal. After checking in we were sent over to radiology to register and get Amaya's x-ray taken. While we were there Josh made it in and met us in the waiting room. I was glad to see him (he always brings a calm energy to these appointments). While I was registering the receptionist had a hard time finding the referral for Amaya's x-ray in the system. Thankfully I remembered my copies (I always bring them as a back up) because they didn't have the codes in the computer and weren't able to allow her to have x-ray taken without them. I showed the receptionist my copies and then they were able to enter the codes and get Amaya registered. Then we moved into a hallway to wait to be taken back in for the actual x-ray. Amaya and Josh played bejeweled on the iPad, which helped pass the time, since there is a lot of waiting involved with these appointments. I asked Amaya who she wanted to go back with her when it was time to take the x-ray. She picked dad, as I suspected, and to be honest I was a little relieved.
     When they came back we went back into the orthopedic office, let them know we were back from radiology and waited to be called back. A few minutes later a nurse led us into an exam room. We waited in the room for Dr. Nelson to come in but, were first greeted by one of the fellows that works with Dr. Nelson (there were three there today). He pulled up the x-ray, asked how Amaya was doing and why we were here. He checked her knees and compared the right one to the left one. He pushed and pulled on her left knee (this part always makes me kind of queasy. It's so strange to see someone pulling on your child's knee trying to see if it'll dislocate). After he left we waited (more waiting) for about fifteen minutes until Dr. Nelson and the team of fellows came in. While we waited we looked at Amaya's x-ray on the screen. It was really cool to see her bones up there and she loved seeing them and asked why her clothes didn't show up on the x-ray. We explained why and then went back to looking at the x-ray. She hasn't had x-rays taken in several years and I was so excited to see how much she's grown. I noticed that she was standing on plastic blocks totaling 7 cm.(2.8 inches), so that her hip would be level in the x-ray.
     When Dr. Nelson came in with his team they greeted us all then began to review the x-rays, take measurements of her femurs, the angles of her hips, her left knee and made calculations. Dr. Nelson told us that right now the difference between Amaya's two femurs is 6 cm, but the projected difference is 8 cm (3.1 inches). So when she's done growing the difference between her femurs is going to be 8 cm. He watched her walk (said she looked great and did good with her lift). Then he looked at her knee; moved it, had her bend and straighten it, pushed and pulled on it and said it looked great. I mentioned the popping and pain but, he said that even though he didn't have an explanation for the popping, the knee was in good shape and the pain was within normal range. He said that the left knee will never be like her right one, but that his goal is to make it the best possible so that the lengthening will be successful. He said that the goal of the lengthening is to gain the full 8 cm that she will need (usually when they perform lengthenings they gain between 4-8 cm. 8 cm is the maximum). Hopefully there won't be any complications and she'll be able to achieve the full 8 cm. That would be ideal, because it would give her all the length that she needs. He said if the full 8 cm isn't reached he would later perform another surgery on the right leg to stunt the growth to let the left leg "catch up."
     During the surgery in March Dr.Nelson will not only attach the fixator, but he will also make minor adjustments to the ligaments in her hip as well as straightening the curve above her knee(you can see it in her x-ray below). She will wear the fixator for about ten months, so about this time next year she'll be having her fixator removed (hopefully, if all goes well). The lengthening process is divided into two phases, the first is the distraction phase (this is when the lengthening occurs, and lasts about three to four months) the second is the consolidation phase (this is where the new bone hardens, and lasts between four to six months). He also reminded us that Amaya will need daily physical therapy (hour long sessions) as well as bi-weekly appointments and x-rays to monitor her lengthening. Dr. Nelson seemed optimistic about the outcome of the surgery for Amaya and said that Amaya was a prime candidate for the lengthening procedure because the surgery would be greatly beneficial to her and provide good results. He also said that she was in good condition and would do great. It will be a pretty intense procedure, but well worth it in the end. Josh reminded me, that at least it's not her brain, heart, lungs, etc. that we're dealing with. It's just a leg, it could be much worse, way worse. We have much to be thankful for.
     All in all it was a great appointment. We confirmed our surgery date for March 6th. And will be returning in late February for our pre-op appointment. Thank you all for the well wishes, calm thoughts, calls, letters and prayers. A strong support system is invaluable, thank you all.

This is Amaya sporting her new binoculars, waiting to leave for the appointment.

This is Amaya's x-ray. 

Amaya and her dad enjoying some veggie food from the Loma Linda Children's Hospital cafeteria.

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