Oct 26, 2009

We Have A New Surgery Date!

Yea! After about 24 phone calls to the cranio-facial surgery scheduler over the past 2 months I finally got the call back with a date! JANUARY 7th! The kids will be on winter break until the 4th and that's Ainsley's pre-op appointment date. I think there is a pretty good chance of keeping her well if we are all away from school for 2 weeks prior. And I'll keep her home from school that week. I'm hoping nothing else goes wrong with this date.

I feel a little weird about being so excited when I know she's going to be going through something so awful. But that's life when you have a child with a lot of medical issues. I'm not sure at what point I stopped being heartbroken when she needed a surgery. But this is a better place to be, mentally, since it has to be done.

My hope is that putting in eyebrow prosthetics will raise her eyelids back more in line with where they were at prior to her second cranial reconstruction back in July 2007. Even though the ophthalmologist says she has good acuity (sight) despite the ptosis but I'm pretty sure having your eyes mostly covered for the majority of the hours of the day must have some effect on how much one can see. This surgery may not work but the brows need to be reconstructed before she has the next eye surgery. I'm hoping it will increase her field of vision in addition to the cosmetic changes.

So Ainsley will be sporting a shaved head again come January. Good thing it's hat season don't you think?


  1. wahoo!!! always good to have the date!! we will keep her in our prayers for a healthy uneventful and successful surgery!! sending our love.!!!!!

  2. Yeah! It is much better to go into anything this big with a healthy, happy attitude, for as you said, in the long run it will be well worth it. I will pray for Ainsley Rae, that she remain healthy and strong in preparation for this surgery. I will also pray for your family as they ready themselves to care for her prior to and post surgery. You and your family are so strong. I showed my dad your site when he was over the other day. He was very interested "of course" in her medical conditions. I showed him the beautiful video you made of her after she was born, and as he read through your blog he said you were a "hero". He's right you know...You do something we all wonder if we could ever do? Of course when placed in these situations most people will rise to the occasion, but you do it with a beauty, love, and grace that surpasses many Susan. You are a true blessing to Ainsley Rae and your family, as I imagine she is to you.....take care friend.

  3. Great news!!! I remember feeling much the same leading up to Kate's LTP - I knew she'd be in pain, but I also knew it would be for the better. Best of luck!!!!

  4. Hi! We are now following your blog and cute Ainsley! Please visit us too! We are starting a new social network geared toward parents who have children with special needs.

    Also on twitter @KnowledgeSafari