Nov 4, 2010

A Day To Truly Celebrate

When you have a child with medical issues you get a LOT of mail from your insurance company. I hate to bump my Halloween post with such mundane topics as Medical Insurance but I must.

Often you get to a point where you just ignore the EOB's, which is dangerous, or anything else that comes from the insurance company. Sometimes, but not often, what they send is important and GOOD. Yeah, that's what I meant to say, GOOD.

This is what I found in the mail today. Some people will say that the happiest day of their life was the day they were married, or the day their first child was born. Not for a mom with a medically intense kiddo who is steadily climbing their way to their life-time maximum benefit of 2 million dollars.  Today is the happiest day of my life! I no longer have to worry that my child will not get the medical care or therapy she needs. While it's true Ainsley receives Medicaid for secondary coverage due to her intense medical needs (ie. the trach and g-tube) that would stop if she gets her trach out. And then what? What a relief! We were getting a little too close to that 2 million dollar mark for comfort.

Sometimes I feel conflicted about the massive cost of Ainsley's life. But what people may not realize is that the doctors don't give you an estimate when they offer a life-saving surgery like a tracheostomy or a craniectomy. I had no idea. And besides it was never really our choice. The unthinkable option of ending her life at birth was never really brought up. Bio-ethics was not consulted. I am grateful that it is not my choice whether my child's life is worth 2 or more million dollars. I am grateful for medical insurance. And I am grateful for my health. And oddly, I am grateful for Ainsley's health. Despite her birth defects (I hate that term) she is actually very healthy and happy.

In addition I received a letter from insurance stating that they needed photos of her eyes to consider approval for Ainsley's eyelid surgery (duh). But when I called the eye surgeon's office they said that was already done and they just got the approval yesterday! So I left a message with the orthopedic surgeon to call me back so we can look at our schedules and coordinate with the eye surgeon. Tomorrow I happen to have an appointment with the orthopedic surgeon so perhaps we'll know then. Then we'll cross our fingers that nobody gets sick. We just finished passing around a cold and I'm still not feeling like myself. Hopefully it won't be like her other surgeries last year that were postponed multiple times due to illness. Whenever it happens, at this surgery they will:
  • remove part of the upper eyelid, place that piece in the lower lid and lift the lower corners of her lids (canthopexis)
  • remove the plates from her legs from the April hip surgery
  • a CT scan of her cerebellum (just to see, now that she's bigger the second looked different from her first and so it would be nice to know for sure what the cerebellum malformation truly is)
It's a bit to coordinate and if you can believe it the eye surgery is normally OUTPATIENT, but the plate removal requires an overnight stay. Who would think removing some plates would be more serious than cutting apart the eyes. Doing the surgeries at the same time will save an anesthesia. Same with the brain scan. Going in once instead of 3 times sure would be nice.

I am scared. And hopeful. It's been 3 long years since her second cranial reconstruction.  Sometimes I have to look back at these pictures a professional photographer friend took the day before that surgery in 2007. If I didn't have these pictures I don't know if I could remember how different her eyes looked before, or believe it. There are hundreds of photos so there is just no denying the change.


Did I say I'm nervous? I'm no longer naive enough to assume a surgery is going to have a positive cosmetic result. The eyes are delicate, and important. We've agonized over the decision but believe it's the right thing to do. My hope is that this surgery might restore her eyes to the level of ptosis she had prior to that surgery. And I hope that she can SEE (not that she can't, but you know it's a little more difficult for her) My fear is....well you can imagine. I'm excited too, in a sick to my stomach way.  I just wish Steve was home to celebrate. He's back to crazy work hours to meet his game deadlines. Busy times ahead.


  1. First of all, congratulations! That is awesome news about Ainsley's health insurance! I remember distinctly the days after Harlie was born - when it started to sink in what was happening and who was going to pay for it! We were so grateful to learn that Harlie didn't have a lifetime cap.

    Secondly, love the way you're doing your photos! I can't even get mine uploaded from the camera - much less all nicely displayed!

    Love Ainsley's baby pictures. I know exactly how you feel about those. And for what it's worth - I'm right with you on your decision. You have my support!

    Much love,

  2. Love the baby Ainsley pictures! What a relief about her health insurance. Tommy had medicaid and SSI, so I never worried about a cap, just whether or not certain things were "allowed" such as one trach a month or one G tube every 3 months.

    I hope everyone can coordinate their schedules for you and she only makes one trip to the OR. It will be nice to recover just once instead of over and over too!

  3. WOOHOO!!! Great news about the insurance. Don't you love when you call about something only to find it is already approved?!

  4. Oh Susan!
    Would you just look at that image of Evie lovingly looking into Ainsley's eyes.
    Rightfully so that needs to be enlarged and put on a canvas, how perfect that you caught such a beautiful moment in time to last you for eternity!

    Just fabulous news!!
    I so wish I could be there for you when surgery time came.

    Hugs and all the love in the universe from me to you.