Avleigh's Journey

Hope is an optimistic attitude of mind that is based on an expectation of positive outcomes. Hope is what keeps us going but then after so long of our expectations not being met we begin to settle and accept things as they are. This is the same as what we have begun doing with Avleigh. Now, we didn’t give up on her but we realize that the odds are stacked very high against the outcome that we have been praying and “hoping” for. Everyone knows the big decision we had to make about a month ago on whether or not to go with phenol as a treatment for her spasticity and extremely tight hip adductors. It took well over a week to make sure I did my right research, get opinions of her other specialist and come to terms with myself on what I thought was best for our baby girl.

We had an appointment this past week with another orthopedic, for a second opinion, to see if his ideas for Avleigh are the same as her original orthopedic. If you don’t remember, her current doctor wanted to perform surgery on her to give her some relief in her hips. His completely disagreed with botox treatments. He said “treating with botox is just like treating a cold with only Tylenol. It relieves the symptom of the fever but doesn’t get rid of the cold”. Although I understand what he was saying, I didn’t feel comfortable with her having surgery until it was necessary. So, we met with this new doctor and he explained things much better and made me feel more comfortable with the procedure. He explained how due to her inability to use her muscles properly that her hips are still only developed like a new born rather than a 3 year old. With that it’s very possible that her joints are going out of socket and we just don’t know it. The x-rays show them right on the edge, still in place but on edge. He also explained how he would not suggest to treat her symptoms at the nerve but to continue to treat at the muscle. Avleigh has never been able to get a full extension in her legs. Even with phenol in the hips and botox in the hamstrings, he still doesn’t think she will be able to accomplish that full leg extension. So of course he strongly suggested no phenol. Where does this leave us? What does all this mean?

You can imagine my mind is now in overdrive. I heard the entire spill and explanation on the benefits of this new idea and it really did sound very promising. I was beginning to get that “hope” back on the possibility of Avleigh being able to stand (with assistance), weight bare and maybe even take steps in a gait trainer, but it does come at a price. How as a parent, a parent of a child that can’t tell you how or where her pain is, do we make such a big decision when we really don’t know what the true benefits will be until we it’s already done. I had my gut feeling on which direction we should take. I knew I wanted to give her more and felt like if I didn’t go through with the more direct approach that I would rob her of an opportunity to improve. Thankfully all of the doctors that I turn to and have so much respect for all agreed! That was how I knew I was making the right decision. So here’s the new plan…

Her phenol surgery that was scheduled for Monday was cancelled. We are currently trying to coordinate doing her new surgery with her eye surgery and MRI all together so that it’s only one time with anesthesia. Two week prior to surgery day she will receive botox in her hamstrings and calfs. On the day of surgery, the orthopedic will inject a dye in her hip joints to see exactly how the rotation is. He will then perform a muscle lengthening procedure on her hip adductors. This is going to give her more relief in her worse area, the hips, and could last for as long as 3 years. Then he will cast her legs from her ankles to the top of her thighs. The cast will keep her legs at full extension. In addition, there will be a rod between her legs to hold them open to get the best benefit from the muscle lengthening. She will have to keep the cast on for about 3 weeks, then she will get lots of physical therapy.

This procedure will be painful for her, but luckily she does tolerate pain fairly well. We will manage the pain the best we can but it will be a very rough 3 weeks for all of us. She will be very mad at us for a little while, but I just know this will be well worth it in the end. The idea of her having just the slight change at being mobile… that would make her so happy. That is our Hope!