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I never shared how Lucey's post-op appointment went. It went well. Her plastic surgeon took her bandages off so he could see for himself how she was healing. This was important since he has accepted an offer at a bigger hospital and moved shortly after our appointment. We have to decide if we will follow him to his new location which is much further away. We love him so we may do just that. He needs new pictures of Lucey and her recovery.
The scar on Lucey's face continues to smooth out and fade. It's about 1 1/2 inches long. I think it has changed her look dramatically. We have no regrets. The scar for the macrostomia repair looks very nice too. It feels a little thick but it doesn't seem to bother Lucey. We apply a special cream to both areas with the hope that it will help with the scarring.
Last week I had to cancel her audiology appointment because I was sick so we have rescheduled. She had a hearing test in May but it was difficult to mask Lucey's good side. We need to see if the non-ear side has a nerve that works. We are looking into a bone conduction hearing aide for her.
Lucey has a neurology appointment in November. Lucey can be unstable on her feet at times. I think it's due to an inner ear issue. Several of you who read my blog have a child with HFM. I'll ask you this: have you noticed this in your kiddo? Would you mind sharing information with me?
After talking to Lucey's plastic surgeon in July, it looks like Lucey will be between the ages of 6-9 before jaw reconstruction will be considered. We are not in a hurry. That surgery will be a big one.
We are thinking that at age 5, Lucey will be ready for a prosthetic ear. Lucey talks about not having an ear quite a bit. She talks about wanting a big ear. Each and every time she talks about it we give her our undivided attention. We talk about it until she is satisfied. The other day she wanted me to take her to the mirror so she could look at her scar. We talk about ears a lot. ;-)
Lucey is in speech therapy and doing very well. If I can't understand what she is telling me she will talk very, very slow and enunciates....it's so cute. Most of the time I can understand her. She has a lot to say.
xoxoxo,
Beth