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!  

Turning 3 years old

So with all the election drama and unexpected work drama, I'm a little behind on my updates. We've been busy getting Gesina in school and smoothing out the transition for the new members of Team Gesina. With her going to school, she now has 2 physical therapists, 2 occupational therapists, 3 speech therapists, one new vision teacher, and two new school teachers. Let's also not forget an additional set of classmates! That makes Team Gesina 19 strong and counting; and that's not counting her classmates or family members. I often say I'm the quarterback on her team and I now have more players on the team than are allowed on the field during a football game. So far things are running smoothly and that is in no small part due to Gesina's string of good moods and all-around happy personality. She has been taking her new schedule like a champ. The school is amazed at her tolerance for the new environment and she's been carrying that good cheer to daycare as well. My brave little warrior gets up and to daycare at 8:30 am, gets medicated and fed and is on the bus to school around 11:30. She gets back to daycare by 3:30 and I pick her up at 6pm. This is a big change for her and me. This is a Monday through Thursday schedule with swim therapy on Friday mornings then all day daycare. I have time to work now but I miss her. I'm sure we'll both adjust but I'm used to seeing her during the week a lot more. Here is a pic from Gesina's first day of school getting a lift from the bus. 

As for her stem cells, the changes I saw in the beginning have stuck around. She is even allowing her hands to TOUCH EACH OTHER at rest! Before stem cells her hands were tightly fisted and never even near each other. Now, she still tucks her thumb (there are ways I'll be investing in to counter this issue), but her hands are moving and tend to cross each others path every now and then. She's been playing with her hand toys with more vigor and does a "roll swing" with her body where she puts all she's got into winding up and smacking her toys with her hands. They go flying and get locked up in her hands and she smiles away. I do believe my little girl is starting to understand cause and effect :-) She's still doing tummy time and using her arms to lift her self up briefly. She's getting longer and harder to "steer" on her exercise ball but won't do tummy time on the floor. She will do tummy time draped across my abdomen though. So I spend a lot of time on the weekends lying on the floor looking at this beautiful face. I hate that my 42 year old back hurts a bit too quickly and that my eyes struggle to see that beauty up close, but I'm a lucky woman either way!

She is still vocalizing but nothing new beyond a few longer vocalizations. I had read that one side effect of her one remaining seizure med (zonisamide) is speech problems. I see her neurologist on Thursday so we'll see what happens there. He has been hinting at weaning but I have been dodging that decision so far. He doesn't know about the stem cells so I'm interested in what he says and wants to do. Her zonisamide has helped her EEGs to be less abnormal. So part of me thinks let's keep it going to get these EEGs as close to normal as possible. This would be in the hopes that normal EEGs would equal less likely to have seizures. BUT, I don't know if EEGs really work like that. It may be that normal EEGs are not a useful goal and that it may just be better for her to wean off the med sooner rather than later. The scientist in me wants another EEG to see if it's improved even more since the last one in April. But what would that tell me? Is it from the zonisamide, the stem cells, or because I've upped her fish oil dosage (2200 mg a day). Either way, I'm interested in what transpires on Thursday.

And last but not least, Gesina did well with her Go Baby Go car! She accelerates with a switch (big red button) using her head. She goes into extension a lot (stiffening her body) so her team decided to use that to their advantage. She has the car in her room and she's used it once at home. Her room is big because she has the master bedroom, but it's still not big enough to get a racetrack going for very long. I'll just have to wait for spring. Here she is, figuring it out!

https://youtu.be/gwNDA3CNiso

I'll give updates on the Neuro appointment, graduation from the NICU clinic, and Christmas in Michigan soon! I also have to start thinking of getting her out of the crib. She's getting a little long and she's a bit of a wild sleeper. And what about a pillow? Can kids with spastic quad cerebral palsy, who have minimal use of her hands and arms, use a pillow safely? Always something new to research!

She loves to fly and it shows!

The m&ms were a hit but we didn't even need them; Gesina was amazing on the plane. No crying, no fussing, nothing but looking around and smiling the whole time both there and back. Here she is after we landed home and were taxiing to the airport.

She did cry in the car half the time but that was a given. She was so good at the doctors office for her stem cells that the doctor was a bit in shock. She had no problem with the nasal spray and smiled during her liposuction!! Who does that? My Gesina warrior princess does :-)

So it's been a week since 275 million of these little lovelies were both taken from Gesina's fat cells and reinjected (via nose spray and injected using a slow release material). The nose spray works immediately and is supposed to lay some of the ground work or infrastructure for the later slow release stem cells. We should see results anywhere between now and 6 months from now. Anything we see, she will retain for years to come. She was also given some supplement compounds and I've looked up all the ingredients to be sure they are brain relevant and safe, and they are. I've also had such good results with her fish oil that I've doubled her dose with those as well. So, now we wait...

Before we even left for Arizona, Gesina was starting to look at people that talked to her. Her focus was getting better and she was more vocal by using mainly one sound but using that sound in more of a reaction to others voices. On Friday, about a week after stem cells Gesina went swimming (which she loves) and after was all chatty but using more than one sound and drawing out the sound for a long time. She was doing this again last night so it may not be a fluke. I had always said I'll stop swearing once Gesina starts talking, I wonder if that time is coming :-) Now I'll have to grow up and use my big girl words to describe my emotions, hee hee.

Gesina is also bringing her arms to "midline" when playing with her toys which is new. Usually she looks like this:

And plays with the toys that happen to hang near her hands. Lately she is not only swatting her toys around but grabbing in one hand and swatting and grabbing with her other hand across her body. It's not consistent yet but I'm hoping this behavior sticks around.

Up next: Gesina has been in a streak of good moods. We have a stretch of doctor's appointments coming up all in anticipation of her first day of school on December 5th, her 3rd birthday. This week Gesina is getting her Go Baby Go car customized to accommodate her. I have no idea how or if she could drive a toy car (can she see well enough to drive? can they customize a way for her to make the car go?) but I'll let her tell me if she can't. I won't be the one telling her no before she even tries. Hopefully you'll see pictures of her careening around corners in the perfect car for her. Either way, we can say we tried!

Preparing for School... gulp!

So the meetings with the school district have already begun. I've met with the preliminary assessment team. Now I meet with the school nurse on Thursday and we gather information for all Gesina's doctors and therapists. In mid-October we review Gesina's assessments and in November, we have her official Individualized Educational Plan (IEP). I do find it amusing when they say on the phone "we'll meet and talk about her IEP in November IF SHE QUALIFIES." Um, yeah, she qualifies. I think my biggest fight will be to ensure she gets a one-on-one assistant like she has at daycare. She is 100% dependent on others and my biggest fear is she's going to be thrown in a corner and forgotten about. This hasn't happened at her daycare (and if I even get a hint of her not being included, I start to rumble) so I'm hoping it won't happen in school. I'm prepared to intervene but currently, with her being nonverbal and not mobile, I don't know how I would know. Can I just randomly drop by her school? Because I'll do that! This is the only reason I know at daycare. I drop by and they send pictures of the classroom and I'll notice if Gesina is not in them or if all Gesina's pics are of her on her own. I'll have to add that to my list of questions for her IEP meeting.

We have $5,550 raised for Gesina's stem cells! So close to our goal of $7,700. I've booked the tickets and hotel and twisted my mom and Aunt Barb's arms to get them to go with me. If you'd like to help us get to our goal, we'd be happy to take your donation! Here's our fundraising page on YouCaring:

https://www.youcaring.com/gesina-marie-deuling-633717

I'm trying to come up with a clever way to ease my fellow airline passenger's pain if Gesina loses it on the flight. I'm thinking of typing up a little of her backstory and attaching it to some bags of M&Ms to pass out. Maybe I can create a wall of "support" and goodwill to help get us all through the flight versus the "DIE DIE DIE" looks I'd get without the bribe. Any other ideas are greatly appreciated! If I'm going to keep our immune systems strong, I'll need to build that wall of support on the plane so I don't have the added anxiety of others' wrath.

Up next, on Monday Gesina has to be put under to get her phenol and botox injections. These injections help loosen the spasticity of her muscles so she can use her body in new ways. She is low on these drugs now and it shows. She is in pain and her body is very stiff and tight. I'm looking forward to her getting these shots but it is a bit scary to have your daughter put under every 4 months. I'm looking into hippotherapy (riding horses) and there is new and very encouraging research on whole body vibration therapy. Gesina is loving her new stander and I'm thinking if I can get that sense of vibration under her feet in her stander, her body can adjust to those movements, using muscles she hardly uses, and this could help later on with walking (so says the research). I'm annoyed no doctor or therapists present me with these options but I'm glad I found them and will make them happen nonetheless. Here she is trying out her new stander and discovering the beauty of shaving cream at daycare!

Fundraising

I have set-up a fundraising page for Gesina's stem cell treatment! Please feel free to share and check back here for updates. If you have any tips on traveling with a special needs 2 year old, I'm all ears!

Help Gesina Warrior Princess get Stem Cells