The NICU clinic was very interested in the stem cells. I thought we would graduate and be done with them but they have encouraged me to make an appointment with their follow-up clinic. They would like to continue to follow-up on Gesina (and the effect of stem cells?) but I'm not sold on this idea. I really want to avoid more appointments now that she is in school AND I've found more resources and treatment options on my own than any doctor or therapist has found. Unless a new doctor/clinic is going to add to my knowledge, I'm just not that interested. Nearly all recommendations the NICU clinic has made for contraptions and tools were a bust. They did support me in some of my early decisions on therapists, etc. but I'm past the point of being afraid to fire a doctor or therapist. So, I think I'll pass on this suggestion.
My pediatrician is interested in the stem cells and even wanted more information to share with a friend. The physiatrist (CP rehab doctor) wasn't interested. So, mixed reactions on stem cells from my Team Gesina doctors but again, no one is getting in my way so I'm happy with that.
In addition to the higher fish oil dose (neuro said that is fine but I may want to stay at the prior level. I trust my research and that all guidelines are for typically functioning folks, not those with brain damage and thus in more need of brain food), I have also added blended salmon, spinach and blueberries to Gesina's g-tube feedings. If she is going to have to have g-tube feedings, then they are going to be amazing superfoods, not just chemical formula diets. Again, so glad I don't have a nutritionist telling me what to do about her diet. Gesina's GI is happy with her weight and doesn't need to see her for a whole year! Ah, I love supportive doctors.
So, what about the day-to-day members of Team Gesina? Any differences noticed? Yes! First, I have to report the most unbiased source. On Fridays, Gesina is in the pool for water therapy with her PT. While in the pool, a group of senior citizens do water aerobics. They have seen Gesina every week for at least a year and Gesina loves to hear their voices and often chatters to them during her sessions. I get to sit in the hall and watch through the windows. On Friday, one of the woman asked me if Gesina is my daughter. I proudly confirm she is and the woman went on to tell me how much progress Gesina has made. That she is now so much more interactive and having a great time. That when she started she was so stiff and uncomfortable but that she has really started to attend to her surroundings. I would have hugged her if she weren't dripping wet in her swimsuit :-)
At school and daycare Gesina is still having strings of good days. She is very sassy with an appropriately timed sideways look at her female teachers, huge smiles when me and her teachers are talking about her, and she continues to break the hearts of her male teachers with smiles. She has a new male target each week! I can pretty much only get smiles from her when I use fun voices when I read books to her OR when I talk about her with her teachers. I'm pretty sure she can hear the fake exasperation in my voice and senses the love. She has continued to chatter and find joy in that. She also has continued to rest her hands on top of each other. She is in need of her muscle relaxer shots so I can tell she's been tightening up lately and was hoping she needs fewer shots/lower dose. We will see. PT/water therapy is going really well with every other week she does something new.
Gesina does still cry in the car though. We had to drive to Muskegon to go to my grandma's funeral and Gesina cried half the way there (a 5 hour drive) and the whole way back. She was a great cuddle therapist though and lightened the mood when needed. I put her to bed in a mattress on the floor and woke up to find her in the exact opposite position on the floor in the morning. No idea how she did it, but I was entertained.
So far, I think the stem cells are helping a lot. Gesina wasn't making the larger strides she is now. She wasn't changing much at all before the stem cells. It's nice to finally see some forward movement instead of the seemingly stagnant stage she was in for so long. The stem cells give me hope (and the fish oil). The only problem is now I want to do it again! I'm already wondering how much I get back from my taxes and how soon we should go again. I wish stem cells were a priority in health and research. So much supportive data but because of the political system and policies in place, this research is going so slow! Everyone should have access to this and research and knowledge gained should be moving and accumulating more quickly. But as a researcher myself, I understand many of the issues and realize they are BS. I will not let my daughter fall through the cracks while the BS gets sorted out. So, we will do it again. Once I get a handle on finances and timing, we will go again. Go Gesina go!
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