Gesina's stem cell doctor (Dr. Proefrock) really wanted to see her MRI and CAT scans but I did not have them last year. I ordered them so I could show him her scans this year when we got stem cells. I struggled about whether or not I wanted to see these scans because I didn't want to change my perceptions of her abilities. I imagined the worst case scenario. In the end and with the support of friends and family, I decided that knowledge was power. I and Gesina's doctors could make better decisions for her if we knew the truth. So I looked AND I showed Dr. Proefrock.
The good news is there is more brain than not! My worst fears were NOT confirmed. Dr. Proefrock explained this scan to me though and I have a better understanding why every doctor is a big Debbie Downer of Gesina's prognosis. The white spots are fluid in Gesina's brain (and damage). Not only does Gesina have the basic brain damage in the middle, but because of the pressure from the fluid in her brain, the structures/neurons/etc. are being pressurized and made more dense. This density can cause cell death and more damage. At the end of the day, the Gesina we see is more functional than the brain scan would predict. Our Gesina is a miracle in the sense that the scan and the child do not match and she's only 3 years old! Who knows where she will go from here :-)
So Gesina got stem cells this Friday (Sept. 27, 2017)! Dr. Proefrock was very excited about the quality and quantity (275-280 million stem cells) and tweaked his approach based on her scans. I also showed him Gesina's functional vision report and he got very geeky/excited about reading that report. He can learn a lot about the functionality of Gesina's brain from that report so that informed his approach with Gesina as well. Now, we wait. The doctor was excited about Gesina's new therapies (Gyrostim, bone conduction headphones, increased fish oil, her healthy brain food tube feedings and my plan to add hippotherapy). He also strongly recommended at 4 weeks we start hyperbaric oxygen therapy. This is usually about 40 "dives" a month and helps feed the brain cells more oxygen. November is going to be a busy month! Here she is after a long day of travel:
Gesina was amazing on the plane and while we were in Arizona. She loves hanging with her posse of mom, grandma, and great aunt Barb. She was all smiles and loved all the attention and interaction. I have no idea how I got so lucky to land this brave, amazing, and miraculous soul to be my daughter!
