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

It's been awhile but things are going well

Gesina is now 2 years 8 months 21 days, and yes I did have to use an age calculator to get that right. If you know me in person, you'll recall that I was absolutely convinced I was 38 years old... for TWO YEARS. It was only after miscalculating my cats age that I figured out that I missed being 37 all together :-( A lot has been going on so I'll recap by "system". 

Stomach/feeding - I had to fire her GI this year and get a new one. I'm on my fourth GI but the last one flipped out on me and I just don't have time for that. Gesina was not eating and was vomiting in December right before Christmas, I called GI frantic (I rarely ask for help so if I call a doctor, I am super serious) and they ignored me for a week. Thankfully I had an appointment with the GI after that week and had gotten Gesina through with tube feeding her real baby food and sometimes mixed real food with her formula as best I could. GI flipped out, declared I may have hospitalize her immediately because she may have/get "refeeding syndrome". Hmmm, so after ignoring me you now care and are thinking I starved her? Awesome. To keep her out of the hospital, I ended up having to get her blood tests every other day NEARLY having to cancel Christmas plans. She was fine, I got her to Christmas with the family, and I got a new GI doctor. The new GI only wants to see Gesina once every 6 to 12 months instead of the every 3 months of torture I was going through. He is also able to read the growth chart for a child with quadriplegia cerebral palsy and realizes that Gesina is NOT underweight and forcing her to gain weight will only hurt my back as I carry her around. I love him; therapists and SOME other doctors on Team Gesina are not yet convinced the lag in between appointments are a good idea. My stress level has gone down so I'm good for now.

Neurology/Brain - Gesina is still seizure free, is on 1 seizure medication, and in April we did a repeat EEG to find that there is "20% improvement" in her abnormal EEGs. This is a statement from my very conservative neurologist so he and I are shocked and happy about this. I have added fish oil to Gesina's supplements and not just me but her teachers at daycare have noticed her being more "aware." Her vision is a work in progress but she has a new room decked out in everything bright contrasting colors and reds. Here is cortical visual impairment "friendly" artwork created by her friends in her daycare classroom:



She is getting better at focusing her attention when she is shown items/toys/faces that make noise or talk. She loves clapping and applause so I'm thinking she may be a football fan this fall. She LOVES her classmates at daycare and when I bring Gesina to school, her classmates yell "Gesina's here!" I wish they could stay that excited to see her forever! She babbles a bit still and seems to do so somewhat in response to others. Here's a video when she just woke up, happy and babbling.

Muscles/Body - Gesina is getting stronger in her neck and core muscles. She likes to stand with her AFOs (Ankle-Foot-Orthotics) on leaning onto an exercise ball. I can put her arms in front of her and she flings herself and lifts her head up. It's so adorable when she does this because one, she has a beautiful face (I'm not biased at all) and two, she looks around like she's never seen the world from her current view before. Her upper body is more stiff than her lower body and she gets phenol and botox injections to help with the stiffness.



Next up is a new swallow study to see if we can finally give her liquids, a meeting with the school representatives (she starts school in JANUARY), and STEM CELL THERAPY! Not covered by insurance of course, but has been shown to not hurt kids but instead helps them to varying degrees. I will take any boost I can get so stay tuned on that.

Gesina is 2 years old!

She was predicted to not get this far by at least two doctors... silly doctors. Gesina has been seizure free since February. Don't get me wrong, she has moments of "odd" neurological behaviors, but nothing I or her neurologist would call a seizure. She is no longer on Phenobarbital and is one month away from being free of Clonazepam! This scares me as just saying this all out loud, seems like I'll jinx it but there it is. But she is keeping it together and will be down to only 1 seizure med, gulp.

My poor girl has experienced pain this year. The year has included teething where she has felt EVERY SINGLE TOOTH come in, numerous hospital stays with difficulty breathing as every cold threatens to get stuck in her lungs, plus, weaning off these meds is more difficult than you can imagine because she gets most of the withdrawal symptoms. With all that said, she has been "waking up" as she comes off these sedating seizure meds and she SMILES a lot. She hasn't laughed since her first time last year but if she isn't sick or going through withdrawal, she is smiling and happy. She had strings of good happy days where she babbles, is great with her therapy, and is fun to be around. When things go bad, she won't do therapy and demands to be held at all times. I get hungry stuck to my chair cuddling her, but I'm so thankful that she's here and is a cuddler! Here's her year 2 Birthday montage, enjoy!