Well, blog readers, I'm afraid I have to tell you that you have been sadly left out of the loop! Not intentionally, but ever since this particular decision was made, I have been too busy preparing for it to actually tell you all about it properly!! You already know that we had been talking about SDR and/or SPML surgeries for Avery, and that we were probably going to go ahead with the less invasive SPML. Well, that is what's happening. Avery is scheduled to have Selective Percutaneous Myofascial Lengthening done on August 26th in Texas. This will be followed by lots and lots of therapy.
One of the few things that most of our therapeutic and medical professionals agree on is that the physical condition of Avery's ankles is holding her back. With the spasticity and the muscle contractures, she actually has very limited use of her feet and ankles - almost every movement in her feet is initiated in her hips. That was an interesting thing to learn, but if you watch her move, you can really see it - even when she's trying to wiggle her toes, the movement starts in her hips, especially on her left side, which has always been the more affected side. It is why you will never see her sitting and swinging her legs, or kicking with her legs out straight - she doesn't really have control over her lower legs, independent of her hips. SPML will help her by loosening up those contractures, and relieving some of the spasticity. The months of ABM therapy will help her by helping her take control of her own body. We are hopeful that the combination will finally make it possible for Avery to prepare for those first healthy, independent steps.
We are excited about the potential benefits of this course of action, and feel good about our decision. But, after having sat down and estimated all the costs as well as we could, we realised that there was just no way that we would be able to afford it all by ourselves. Which is why, for the past month, I have been spending every spare moment on fundraising. I have spent hours and hours soliciting local businesses to participate in a discount card fundraiser, organised a benefit night at a local restaurant, enlisted family and friends to help, designed fliers, information sheets, hand-out cards, the list goes on. It has been crazy busy, but also a very educational experience for me! I have had to really put myself out there, and learn how to take rejection. I have been up until the early hours of the morning sending out follow-up emails and designing sections of the discount card. I am tired, a little burnt out, but excited. It must also be said that I have been truly amazed and touched by the number of friends and family, and even strangers, who have been willing to help Avery. Your generosity has made me a little bit of an emotional wreck (in a good way), and I thank you so much for supporting and loving my sweet girl. We are still a long way from our target, but it doesn't seem out of reach anymore.