Friday, January 16, 2009
On the Mend
Well, one week later, the hives are down, and Avery is coming around again. For a few days there we were really concerned that she lost several skills... and though they are not all back yet, today at least she said a few words when pushed, and waved once. She continues to have days where she is more "off" than others, and the roller coaster ride called Autism continues to throw us for a loop. She will stay on all four mast cell stabilizers to help prevent further outbreaks.... and we continue to search for answers. We are looking into the possibility of an adult stem cell transplant, as well as other biomedical treatments both natural and pharmaceutical for her seemingly extreme case of Mastocytosis. It is all exhausting.
Personally, I feel like I have had my own regression of sorts as we move forward. When I was a naive therapist with no kids of my own, I once asked a family who I was pretty close to if they were "out of crisis mode yet?" The mom told me at the time that, with Autism, life is always taking you in and out of that mode... and boy was she right. Time will heal us, and acceptance of our lot in life will once again come to show, but when your kids are sick, money is tight and you can't sleep at night for a teething baby and a toddler with Autism whose central nervous system are all out of whack... sometimes it's hard to maintain that positive outlook. I will keep trying though. I am frustrated and angry at the lack of progress, but I am so incredibly grateful for the happy, easy, and gentle spirit in my daughters soul. She continues to be my greatest teacher, I am just so hopeful for some sort of break for her. Some answers to how to help her. An inkling of proof that she will start to get better. THIS is the ultimate lesson in patience and accepting the unknown. I just wish I could have learned it some other way.
I took some pictures this week of my sweet girls that I will attach to this post. Kaylee is 8 months old. She is babbling all the time, waving, imitating and almost crawling. Though she is a bit more feisty than her big sister was at this age, it is hard to believe that Avery was reaching all of her milestones on time at this point as well... in fact, she was already crawling by 8 months. Now she can't look up without falling down, still can't run, and has a major over all disability with motor planning, in addition to the autism and masto. Talk about brain damage. But both girls bring me and Bryan so much happiness, love and inspiration. Avery is BOUND to make some progress, but you know what... if she doesn't, if she forever is who she is right at this moment... I will still be so grateful for her and to her for all that she brings to my life.
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What sweet pictures of the girls. They are both beautiful!
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