Fall Updates

Long time no post! It's been so long that I don't know what you know and what you do not know. We are still seizure free and now off of ALL seizure medications! Gesina's neurologist was pretty much speechless about this. He admitted that he never would have expected this based on her start in the world.

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!

Summer "break" is coming up

Gesina is coming to the end of her first "year" in school. It was really a half year but close enough. She has done really well! She handles the sounds and chaos of kids at school and daycare like a champ. She doesn't really startle as much as she used to and she smiles at the kids voices. I think she likes school. Right now, the other kids seem to love her and some even take the role of helper or even friend. As you may expect with 3 year olds, her best friends rotate in and out every few weeks but absolutely no one has been negative towards her. I love that! I wish they would stay that way forever.

We are weaning Gesina off of her last seizure medication, zonisamide. It is going to take 3 months because I want to take it slow but so far, she's been very sleepy, a little grouchy, and nauseated. She's not eating as much and vomits a little. She seems to be getting better after the first few weeks of the weaning process but it could be a long 3 months if this continues. Much like me and my mom, Gesina seems to be "receptive" to medication. It doesn't take much to have a reaction but every time we wean her of a drug, she has withdrawal symptoms. I'm nervous, but hopeful. I don't want to dream of how nice it would be to not have to wake her for her life saving meds every day and night at 9 o'clock since she was born.

Gesina is also getting a new bed. I am having someone make her one because I don't want to spend a few thousand dollars on an ugly metal, medical bed. They look horrible (imagine a jail cell) and she is a kid and should have a good kids bed! The first design would have cost $3900 just for the bed... the second design is under a $1000. I'll post pics when its done :-) I think I'm pretty cool because it's going to have shiplap on it... like I'm Joanna from Fixer Upper!

Team Gesina may grow by 1 as I meet with a functional neurologist next week. He does more chiropractic, out of the box therapy. I got the recommendation from a CP moms group on Facebook. I'm cautiously optimistic because this will cost money BUT I have to try. If it doesn't help her in any noticeable way, we can discontinue and say we tried. If it helps, then yay! In the meantime, I'm going to schedule her next stem cell treatment for August. I will probably have to do some fundraising on that again :-( I hate fundraising. I waited to have a child when I was financially stable. The theory was no matter what, I would be able to support my baby. But I didn't count on Gesina. I need to find a way to make more money to support my "Team Gesina" habit :-p until then, I'm glad I have my village to support us. A big THANK YOU to everyone who supported us last year!

4 months since stem cells

It's been 4 months since stem cells so I thought I would write an update. I'll start with the doctors and appointments. Regarding her neurologist and his reaction to stem cells, he seemed disinterested :-( I guess it is his job to be a skeptic but at least he hasn't gotten in my way. In April we plan to get a blood test to see if the levels of zonisamide are even at a therapeutic level and if a new EEG looks even better than the last. She will likely have abnormal EEGs forever due to the brain damage but if the EEGs haven't gotten worse, we will wean off of her last seizure medication! There is always the chance that the seizures will come back, but we would deal with that if it happens. Also, that would be one less medication and doctors appointment to juggle!

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!