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!

The invisible elephant in the room

I've begun to notice that when I'm out and about with Gesina, people are starting to realize she's different. Often I get the "awww, she must be sleepy" comments when people try to engage Gesina in conversation and it seems as if she is ignoring them. Or when people see me carrying Gesina who is obviously not "helping" by latching her legs around my waist and has her face buried in my shoulder. Gesina has water therapy every week at the Y on Friday mornings. She loves water therapy! While she's in the pool there is a water aerobics class for those with the aches and pains that come with age. Gesina loves to listen to them chatter and they tend to enjoy seeing her as well. Last week one of the ladies came to me out in the hall (the viewing area so I can see Gesina's progress) and she said watching Gesina just breaks her heart. She asked what was her diagnosis so I filled her in. She was so sad for us! I let her know that it's okay, mom's like me are fine. We think our kids are perfect just the way they are and really couldn't love them more than we already do. She seemed dubious but somewhat comforted by that but it made me think.

When Gesina and I go about our business, those who see us see the "big elephant" in the room. Gesina is different. She defies what they anticipate from a child her age. She isn't following the script or norms society has laid out for her. This is unsettling so people tend to seek a reason (sleepy? and as she get's older, just what is wrong with this kid?) as to why this child is different. When they realize they don't have enough information, they may ask, make assumptions, or worse, panic and quickly look away. Gesina's differences is the elephant in the room for them. The thing is, her difference isn't an elephant in the room for me (or Gesina so far). We go through our day modifying how we do things, taking pleasure and joy out of what we can and living in the moment with no thought to what the future holds. So when we cross-paths with someone new, our mind is on regular everyday minutia when their mind may be obsessing about making sense of Gesina's differences.

So what does all this mean? Well, my pre-Gesina self was overwhelmed with anxiety when I came across an individual with a disability. What do I do, what do I say, where do I LOOK, how do I make sense of the elephant in the room!! Now, on the other side of that experience or at least as a mom pushing the wheelchair, I can finally give some insight. We don't see the elephant. We've accepted the diagnosis, the treatment, the outcomes, the prognosis. We've moved on and are just trying to enjoy the day. So there is no need to address the elephant in the room, it's invisible to us. Instead, react as you would to anyone that doesn't have a huge elephant sitting in front of them. Comment on the weather, a smile, a neat shirt; heck, a cool wheelchair. You are not belittling an individual with a disability by looking past their disability. Gesina and I are bombarded with information on her condition at every doctor's appointment (every three months we revisit 3 specialist doctors and her pediatrician) and every therapy session (4 sessions a week with 3 or 4 different therapists). Any given stranger isn't going to tell us anything we don't already know by addressing the elephant. Also, while I am an educator and am happy to raise awareness, I'm also just a mom who want to be sure her daughter is having a good time. So when we are just out and about, feel free to connect with us by ignoring the elephant. It's okay to look Gesina in the eye and smile. She may not react the way you expect but at least by treating her like a nearly 2 year old, she'll have ample opportunity to learn how to react like a 2 year old. I once heard a doctor say that if you treat your child like she's blind, she'll be blind. So I intend to treat Gesina like she is a 2 year old, so she can just be a 2 year old. And with that, I leave you with her Halloween outfit. This silly girl LIKES tutus!

No more Pheno (barbital, that is)

So I just requested and got permission to stop giving Gesina phenobarbital! With her dose at 1/2 pill at night, she was not taking enough to be at a therapeutic level and it's been nearly 2 months since her last decrease. No seizures but of course, a few moments that make you go "hmmm". When she's sleepy she does this odd eye open/close thing every now and then. I've only seen it about 3 times and it corrects itself as she either goes to sleep or wakes up. But either way, I don't see them as seizure activity and in a month I see her neurologist and I'll let him know. I'm hoping he'll want to repeat her EEG so we can see if they have changed at all. Her zonisimide is supposed to "normalize" her abnormal EEGs so I'm curious to see if that has happened. She started that med nearly a year ago so I sure hope so! Here she is as she stops to smell the wildflowers at daycare.

Gesina is also loving her water therapy. She is starting to kick the side of the pool with her feet and me or her therapist (whoever is with her in the pool at the time) exaggerate the effect that has on her body. Her PT says Gesina is very talkative in the water and loves to hear the chatter of the ladies doing water aerobics with her in the pool. Unfortunately for me, the recplex pool I take her to is not as warm as the therapy pool at the YMCA. This means within about 10 minutes in the water she is shivering and her little lips are blue! The other unfortunate thing is the recplex pool is child-oriented with slides and all kinds of waterpark features. For us this means that after being in the pool about 20 minutes, inevitably someone's little bundle of joy will $h!+ in the pool. I'm not saying that will not be Gesina some day, but note to self, swim diapers are always a good idea! Here's Gesina after the pool when she won't stop smiling; not even for me to clean and dress her!

More good news about the water therapy is that I've finally gotten one-on-one time with her PT. In the past we never crossed paths but now I can finally talk to her about what Gesina can do. Gesina is most active at night and has been known to, for months now, stand with my assistance. She stands by resting her arms and head on my shoulder. PT sees Gesina in the morning when she's knocked out from her Clonazapam and isn't capable of nearly as much. Well I've been able to talk to PT and show her some of the things I do with her. I've even gotten her to see Gesina needs a stander! Here she is in her new stander.

Just look at that head control! She's been so strong lately and good at keeping her head up more. I'm hoping she continues this string of successes because it is so FUN to watch! She's amazing, and I love her!