amaya at lake

amaya at lake

Wednesday, December 11, 2013

Upcoming appointments

     A few weeks ago the girls had their yearly check-ups with their pediatrician. It was a great visit. I'm happy to report that both girls are healthy and thriving. While we were there we got a visit from Marilou. She is the referral coordinator for the clinic where the girls are seen. But through the past few years she's become a friend of ours. It's funny because last year during Amaya's lengthening I would talk to her on a weekly and sometimes daily basis. But now that things have settled down a bit I can go months without talking to her. Occasionally I call just to check in. I do miss talking with her. So we were so happy that we got to visit with her for a few minutes. She was very kind and encouraging to Amaya and Lidie.
    The girls pediatrician was happy with how the girls are growing and how Amaya has recovered. Its nice when others see the growth and development in your children. Especially in Amaya. She's recovered not only from her lengthening but from her rod removal as well. She's recovered so much and is doing so well. The pediatrician gave us follow-up referrals to go see the wound care doctor and Dr. Nelson, Amaya's orthopedic surgeon.
    It took about a week or so for the referrals to come and this morning I just finished scheduling the last appointment. In January we have an appointment to see Dr. Nelson. He'll be taking new x-rays and getting new measurements to see Amaya's projected discrepancy. We also want to mention a few of Amaya's complaints to him. Lately her knee has been popping and hurting her. When it "pops" its because it pops out of place and you can hear it quite loudly. Its disheartening to hear her bones pop, its something I've never quite gotten use to. And its sad that she gets pain from it. We massage her knee, which helps her, but she refuses any pain medication and says she can handle it. She's one tough cookie. We also want to mention that Amaya says she feels "un-level." This is the first time she's complained about this since her lengthening surgery. During her surgery she grew 3.1 inches in  femur and her left leg (her PFFD leg) was slightly longer than the right one. But she's gone through a growth spurt since then and she has a hard time saying which leg feels longer, just that she feels unlevel. She also complained to Josh that she's "the slowest one" at school. Its sad to me, because she's comparing herself to non-PFFD kids. Kids who haven't gone through surgeries and therapy just to get to where she is. I wish I could help her see her strength, courage, and resilience. But, when you're eight, being the slowest isn't fun. I get that. Josh and I notice and think that part of it can be from her walk. At times she reverts to a skip-hop type of walk, especially when she's trying to go fast. She picked up that bad habit while she had her fixator on. It was easier then to hop on her right leg and swing the left one to "run," but now she's continuing it. Josh and I are wondering if maybe some therapy would help her or adaptive PE at school, or a combination of both. She still has some atrophy in her left butt muscles which can be contributing to it as well. We were doing therapy homework exercises to help work on those muscles. I'm going to begin doing them again with her to help strengthen them. Melissa, Amaya's therapist, had said that the atrophy had affected her gait. We stopped the exercise when the rod was pushing out of Amaya's femur and bothering her. But now that its out and she's recovered from that I think its time to start again.
        In January she'll also be seeing the wound care specialist to follow up on her heel. She still has a blister, mushy, type area, about the size of a quarter. We continue to tape the area every day with special tape to give it support and help it heal. We saw the specialist about six months ago and he wanted to see her again to see if the area was continuing to heal and to re-measure it. When I called in this morning the nurse and receptionist remembered us. The receptionist said, "oh, you've got that little gal!" The majority of patients there are seniors and since Amaya is so young she stands out. I'm looking forward to going, to hopefully hear that the area is continuing to heal. Its sad and frustrating knowing that were going on two years now and the area is still there and unhealed. According to the last estimates from the specialist, we've got another 2-4 years for it to fully heal. I can't tell you how incredibly frustrating and hurtful that is for Josh and I. But, all we can do is continue to tape her heel day in and day out, make sure she wears her heel pillow at night and the boot they gave her.
    I'm looking forward to the appointments and to seeing her doctors. We're very fortunate that Amaya receives such quality care from such kind doctors and staff.

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