Avery Grace

Avery Grace

Tuesday, August 4, 2009

Fingers Crossed

Most of the time I am able to add to this website when Kaylin is sleeping in the afternoons, or when Avery is at school, or when the kids and Bryan have long been snoozing, but lately, we haven't had a whole lot of down time. Avery is in school less for the summer, and when Kaylin naps, Avery and I have been able to share some quality time together. Additionally, we have begun a new treatment for Avery that takes up about 2 more hours a day... on top of ABA, RDI, Speech, PT, Neurofeedback, biomedical supplements and medications. I have been hesitant to even write about it, but now that we are 14 sessions in... I want to share with you some of the "why's" and "what's."

At the urging of our immunologist, and following countless hours of research, we rented a Mild Hyperbaric Oxygen Chamber for the month. Shortened as HBOT, we decided to try it given the latest double blind studies published earlier this year regarding it's effectiveness in treating some of the symptoms of autoimmune diseases and Autism. Here is the idea: (specific to Avery). When your body has an autoimmune disease, one of the unpleasant side effects of this is brain inflammation. For Avery, her body produces too many mast cells, cells responsible for producing histamine in allergic reactions, hives, and inflammation in your organs, namely, the skin, GI system, bone marrow and brain. Inflammation of the brain results in a lack of oxygen reaching various parts of the brain, impacting connectivity and all functions of the brain from physical, emotional, language, immunity ect. What HBOT does is put the body in a position (through pressure similar to being 12 feet underwater) to which it can soak up the oxygen being pumped into the chamber, thereby improving blood-flow and cellular function. HBOT is often used in hospital settings following surgical procedures and injuries to speed healing and reduce inflammation. Lately, it has been used for many children with Autism, yielding promising results... even from government funded studies.

So, Avery has done 14 "dives" so far, mostly with me, a few times with Bryan and we are already seeing some really fantastic changes. Initially, she was a little more "stimmy." She was walking WAY up on her tip-toes and mouthing everything in sight. Right away she was making more noise. Her eye contact is improved, and for the first time in her short life, she is able to run. To really run. Her motor skills have been so shaky, and her apraxia so severe, I was beginning to question whether she would ever have the balance and coordination ready to master this skill. I attribute this jump in progress to HBOT. Additionally, Avery's receptive skills are noticeable improved, and today she said FIVE, yes, count em, FIVE words! Also today, I asked her to "get Diego" and she brought me not one, but TWO diego dolls that were on the other side of the room. For those of you who know Avery... you know this is HUGE for her.

So, as you can see I am really pumped up about this. I wasn't born yesterday, and I am not expecting miracles, but already I would say this treatment has been worth every penny. Everyday I read more testimonials, and today I was reading scientific animal studies showing HBOT reducing mast cells in mice and rabbits. If we continue to see the rate of progress we have seen so far we will do whatever we have to to to actually purchase one of these machines. I don't care if we have to take a second mortgage out on our home. This really could be THE thing that helps Avery be all she can be. I am so elated to be with her on this journey, and to witness with patience and perseverance her coming back to us.... little at a time.

1 comment:

jenn barbee said...

:)yea Avery! Jenny, I'm excited to hear she are trialing this. I just admitted a patient last week w/ our home health agency who also does HBOT. According to Mom her daughter is "a different person" since starting. That's just anectdotal but wanted to encourage you all to keep up the good work. How much does 1 cost to own? Any way to have a non-profit fund raiser for it in the future???

praying for it all,
-jenn barbee