Rounding Second Base

As of today we are officially done with one third of the treatments planned for this round. Sienna has definitely begun to show signs that the treatment is doing what is intended. Soon I will create a page listing some of the studies about this treatment and others we will be trying. We are also going to start a therapy where she will get to ride on a horse in a special saddle which will maintain her foot position and help her with balance. This is a special program which Susan managed to get her in to at a Non-Profit ranch here in California! Should be able to get started next week and I am looking forward to it. I will post pics of that as well. :-)

Ways to Donate

So it was brought to my attention that of course not everyone likes to give credit card information online. So there is a new page with the address for those who would like to send checks or money orders. You can also use Pay Pal or the link on the right. Thank You all for the continued support and prayers!

http://www.kvoa.com/news/kristi-s-kids-sienna-needs-your-help/

http://www.kvoa.com/news/kristi-s-kids-sienna-needs-your-help/

Day 5

I have learned a lot here, in just this short week. One thing I learned and want to share is that no matter what anyone says to you about your child or loved one...there is always more. There is always another way. More options than just drugs, surgery, stasis, or death. Believe it. Ask questions, do research, and NEVER GIVE UP ON YOUR KIDS! YOU are their only advocates as parents and YOU can push past a person who tells you there is no hope and prove them wrong. Ok now that that is off my chest...we are doing well and Susan is just an amazing woman. I am so blessed to have found her and this center for Sienna. She is getting into everything and being quite charming as usual. :-) More updates to come! Here is a picture of her asleep in the chamber with me.

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

Car Show!

There is going to be a Car Show and Raffle for Miss Sienna In Tucson this Friday! Here is the article my wonderful friends had posted in the paper. http://azstarnet.com/news/local/car-show-to-benefit-ailing-tucson-toddler/article_23122b7e-b0bf-11e1-9131-0019bb2963f4.html