Day 1

Don't worry the post title does not mean I will post every day! Ha ha So we are here! We made it here last night after a kind of scary drive..lots of wind on the freeway is no fun. Sienna slept for a very long time and overall did well for the drive. This morning we went in and got a mini trial treatment. I am claustrophobic and it was kind of hard for me...but I can do anything for her!! She did not like the hood too much but she will get used to it. I did not have time to make video before we left as things were fairly chaotic but I can give a synopsis of things now. My biggest concern is her head size above all else. At this point at last measurement she was in the 5th percentile for her age. Measurements will be taken when we get back and hope for the best! As far as mobility goes, she can crawl, she can stand with some difficulty and mostly on her toes, she is overall very stiff in her lower extremities but also some in her arms. Movements are slower than an average two year old and less precise. She also still has trouble with table foods and does not say any sentences and very few words with no real consistency. Hopefully there will be reduced tightness and other improvements so we will see :-) Studies show that most improvements are seen AFTER the course of treatments so please dont expect me to say "shes walking!" tomorrow or next week because I probably wont. I have not only enormous faith in this path but also patience. She could definitely be worse off and I thank god every day that she is not. I will say that just because her condition is not as visually severe as some, it doesn't mean she doesn't deserve to have a prolonged life and get all the help she can. I miss my family. It was for the best to have them stay home and not endure daily treatments and travel but it is hard on all of us just the same. Luckily I can remain in contact and even see them when I want to. (of course it isn't really the same.) What did people do before the internet, smart phones, and Skype?? lol