Our first Movement Lesson
The background...
About a month ago I received a message through Facebook from the grandmother of a little boy named Hudson. Hudson has the same special brain that Santino has and was diagnosed with BPP as an infant. His grandmother read Santino's website and was surprised that I was told there were only 40 cases of BPP. She said that there are more than 40 people with this diagnosis and that she and her daughter have done a lot of research and reading about it. She sent me the link to a blog about Hudson. He recently began a special therapy called ABM and is making great gains. I, of course, asked to get in touch with her daughter after reading her blog and seeing the progress Hudson is beginning to make. Her daughter gave me the website and also told us about a doctor in Seattle who specializes in Polymicrogyria. I immediately began searching the website, ordered the book, and found that they have trained practitioners all over. After posting in the Arizona support group in search of a practitioner here, I received a message from a mother who goes to Micheller Turner. Michelle is in Peoria, which is a lot closer than flying to California for this therapy. I called her and knew it was a perfect fit that day. She called me back on a Friday night and spent some time on the phone with me explaining her philosophy and a bit about herself. I have been anxiously awaiting today’s lesson all month!
This morning I decided to record Santino before his movement lesson. I thought it would be a good comparison to look back to after he has several lessons with Michelle! Here is the video I posted on FB this morning!
Back to the lesson... As Michelle worked with Santino you could see his eyes lighting up. He was so proud of what he was doing. In the pictures below, he looked at me to be sure I was watching, looked at his nurse, and finally to Michelle as if to say, “I am amazing aren’t I?” By the end of the lesson, Santino was rolling with very little support from Michelle. He was also breathing better and so happy all day! I am so excited for our next lesson. I scheduled a back to back lesson for August 2nd at 10am and 2pm. Here are a few pictures she sent me. She will be sending a video soon!
Vacation
The Transformation
Pulmonologist Update
The bad news... Santino continues to have many desaturations throughout the night which is interruption his sleep and mine. His apnea monitor is also going off more often now, so the oxygen concentrator is not really doing the trick. It fooled me the first two nights, but things are back to how they have been. I am pretty sure I get up 15 to 20 times a night to check on him for suctioning, pulse ox machine beeping due to desats, or apnea monitor going off. I spoke with the pulmonologist and we decided that it would be best for him to be on a vent at night. The vent will give him 6-8 breaths per minute depending on the setting we choose. This means he breaths normally, but ever 6-10 seconds. If set correctly, he should not have desaturations throughout the night. Better sleep for him and me! The doctor ordered the vent and it should be in within 2 weeks. We will then have to stay in the hospital for 24 hours to learn to use it.