Tuesday, October 5, 2010

Lucey Update

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.


  1. We thought Lydia would be tipsy because of the microtia/aural atresia but the ct scan showed that her inner ear is perfectly intact on her microtic ear. That keeps her balanced very well. She can actually spin on a dime if she wants. Our audiologist is still focusing on speech diction now and not talking with us about BAHA yet. I think it would help her but then she is so sensitive in her "good" ear that she requires a sound machine to sleep! I say stick with a good doctor if you have one. I'm hoping we'll have good care at our next assignment since that will be about the time we have to decide about surgery or not.

  2. We just found out last month that our daughter her also has Microtia/Atresia has a fully functional inner ear. I have an appointment on Nov 5 to go over what kind of surgery is in store for her and at what age. We were told by her plastic surgeon probably around age 5 or 6. I haven't noticed in balance problems with Zoe, but I have to say she hasn't had one ear infection since we've been home and no fluid has ever been seen behind her other ear. Our oldest son had ear infection after ear infection when he was little and had to have three sets of tubes. He was also very unsteady at the time the fluid was built up, in fact that was about the only sign that we had that he had an ear infection because he never ran a fever or felt sick.


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