Last minute stress

It’s days like this that I realize all over again that my baby girl has arthrogryposis, type amyoplasia, that she did nothing to deserve, and what that means for her life–a life that is a total blessing to me.

We are leaving in three days to fly all day to Philadelphia. Then on Tuesday, November 16th at around 6:30 AM, Laelia will have her most major surgery yet.

The surgery is five words long: bilateral (both sides) proximal (nearer to the body) femoral (thigh bone) reorientation (change position) osteotomies (bone cuts).

What they do is cut all the way through the bones extremely close to the hips, removing them and then clamping and pinning those bones in a slightly different location facing downward. Since Lali has joint contractures (which is when the joints harden and don’t move) in her hips, and doing surgery on the joints themselves will cause her to be immobile, we are hoping to move her bones around her contractures so she can one day stand. We don’t yet know if she has the muscle strength to stand or walk (because of the muscle weakness of amyoplasia), but she will never be able to even have the chance without this surgery. Right now her legs are externally rotated so that her knees turn out and she can’t bring her legs together. With this surgery the thigh bones will still be facing outwards, leaving her legs externally rotated, but the bone will be positioned downward so she will, for the first time in her life, bring both her legs together.

Think of a ballerina doing first position. We also call this surgery the sitting-like-a-lady surgery since right now she sits with legs wide apart.

The surgery will take many hours and require weeks of recovery as well as six weeks in a lower body cast connected by a bar at her feet.

A year from now they will do another surgery (in Philadelphia) to remove the pins and clamps that will be inserted internally into her body and at that time they will be doing another major surgery on her knees and left foot as well.

I’m having a bit of stress today as we are still trying to get a rental car worked out, we don’t know if Ronald McDonald house will take us (we don’t find out until the day of) and we’re not packed. Also if any troubles come up during surgery and we’re unable to fly back on time then that becomes another expense and headache to work out. And sickness is going around town, Charley is on antibiotics, and we can’t risk Laelia getting sick right now.

Some wonderful friends are dropping by Sunday to help me clean so we can bring Little Miss Post Op home to a clean environment. We’re looking at some hard weeks ahead. We’d appreciate everyone’s positive thoughts and prayers for success as we proceed. Thanks.

4 Responses to “Last minute stress”

  1. Laura says:

    I’ll be praying for you! And God is always with you!

  2. Anonymous says:

    all of you will be in my thoughts and prayers.

  3. Robin Clark says:

    Today I will ask for prayers for Laelia and all of you as you prepare for her surgery. God Bless!!

  4. Abigail says:

    I’m praying for Laelia and you her parents today.

Leave a Reply