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

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!

Summer!

Another long time no post but we have been thoroughly enjoying summer! I think the more stable Gesina's situation and my ability to function as her mother is, the less I blog. It's when things become really crazy and dramatic that I need the blog to "get it out". So the less you see from me, the better ;-) But for those out there following along, Gesina has taken the next step on weaning off of phenobarb and this time, no withdrawal symptoms! She only takes a half pill at night and we already know that she is now below the "therapeutic level". No more pheno fog and it shows! Gesina smiles in response to her environment!!! And she smiles a lot which so warms my heart. I was known as a smiley kid so to see Gesina repeat that is amazing... I have a smiley kid!!! Sorry for the exclamation points but to see her smile in response to Adrian, me or her many friends from Team Gesina just takes my breath away. I will admit that as I watched her in water therapy this morning cracking her smirky little smile at her physical therapist when she pushed with her feet off from the side of the pool I GOT MISTY EYED! I think I used to feel this amount of love for my first cat Yoshi once or twice but with Gesina, it's a million times stronger, comes out of nowhere and can take your breath away. For reference, this is Yoshi and yes, she was a cuddler:

You would think I had a pic of Gesina smiling but... ah... I'm too busy getting misty eyed to grab my phone. I'll work on getting one but in the mean time, here is Gesina getting ready to go outside at daycare. She is the coolest kid I know!

We are still pretty much seizure free (one minor episode when she was going to sleep one night but Neuro and I are not convinced it was a seizure so we are "keeping an eye out" in case it happens again). Gesina's wheelchair is taking forever but we are working on it. Next up is getting her in a stander because she has strong legs and does like to stand if I hold her head up. She loves going to the pool so I do that as much as I can. And vision-wise, she is making strides. Adrian ALMOST got her to laugh last night by swatting her light up balloon which startled her and then amused her. She also responded to him tickling her! She has ignored all tickling previously but is now starting to notice it. It's a fun time as she starts to notice and respond to her environment more. Here she is LOOKING at her toy.

I'll work on getting some more smiles in the photos for next time. Yay summer!

Pneumonia

It's been a long time with no new posts but lots have been going on, including another hospitalization, still seizure free, and now, pneumonia.

The good - We are slowly weaning her off of phenobarbital which is one of her 3 seizure meds. It also makes her really sleepy so I'm hoping to see her more alert as those levels in her blood go down. So far, she hasn't had any seizures as a result of this and it's been 4 weeks at the reduced dose (33% less med than before). She had a fever spike and a few odd looking up moments during that spike, but not enough for me to call it an all out seizure AND if it were a seizure, it would be a febrile seizure and not likely caused by phenobarb. She did have a few withdrawal symptoms at first (moody, muscle twitching, and the crying, OMG, the crying!) but we worked through it. I'm pretty hopeful that we can ditch this med and move on with our lives. I don't want to jinx it, but we are 5 months seizure free!!! Here's Gesina at her papa's softball game.

The bad - Gesina had the breathing issues again which put us back into the hospital for a few days. She now has to have breathing treatments (5 a day and she doesn't like it) for the remainder of the spring "asthma" season. You have to be 2 years old to be considered asthmatic but Gesina is well on her way to that diagnosis. I'm not sure how to interpret that as she has spastic quad cerebral palsy, she won't be a terribly active kid. So how would asthma be triggered? But I'm sure some doctor will explain it all to me when we get there. She also got a cold (with a fever that spiked to 104 F in 10 minutes) that turned into pneumonia and she is currently fighting that. She is on 8 medications and alternating acetaminophen/Midol for fever or teething pain. Traditionally, I've always been a minimalist with medicine. I don't take it unless I have to and I get off of it as soon as possible. But with Gesina, well that's not a philosophy I can afford to take. When Gesina is sick, she demands to be held 24/7. I know people THINK they know what that means, but you really have no idea. If I set her down to get her meds, she screams. I can't get food for me (I eat ensure to avoid putting her down), she eats pediasure via tube because she is too uncomfortable to eat solids right now. I LOVE the cuddles, but also not-so-much love it... I had to buy a baby carrier so I can walk and use my arms because it has been a really long 2 weeks. She is getting better but these sick days come out of nowhere and pretty much demolish any plans I may have for the day/days ahead. Here she is, exhausted after a day of crying:

The "ugly" - I was so excited to have Gesina try chocolate chip cookies, here she is with her first bite!

She didn't like it... I'm left shaking my head wondering how, exactly, she could be my child. More cookies for me I guess. And here she is recovering from pneumonia. She would cry and cry and not go to sleep... until I went to feed her. Suddenly, she "fell" asleep. She is so sneaky!

Love this girl to pieces!!

Holidays at Children's of Wisconsin Hospital

So we've spent our 6th holiday in the hospital and our second Easter. To be fair, I'm pretty sure she was released from the hospital on her first Easter but regardless, Gesina will grow up thinking holidays mean IV's, nurses, and various other medical procedures if we keep this up!

A month ago Gesina was admitted to the hospital for shallow, rapid breathing. After all the breathing treatments, she just "got better" overnight. On Saturday, she started the shallow breathing again. Because she wasn't magically getting better and in fact, seemed to be getting worse, I had to bring her in. I haven't seen the ER act so quickly at my small time hospital! Of course, we got transferred to Children's of Wisconsin (CW) via ambulance but Gesina was in good spirits. Here she is with, as Joe Mazzola said, the cutest ventilator ever!

She is getting enough oxygen now, her heartbeat has gone back down to near normal, but her breathing is still a bit rapid for her. She is going home today (Tuesday) but we get to bring home a baby inhaler. She is now considered at risk for asthma because of her strong reactions to respiratory viruses. I'm hoping she can dodge another diagnosis but as a child with quad CP, I don't THINK I'll need to worry about her overexerting herself physically... but I could be wrong. That is a question for her Physiatrist.

We've also been trying out a wheelchair/stroller combo. It's got bells and whistles but needs to be to support her head and trunk. Here she is demonstrating how no one controls babies head, not even the "best" wheelchairs!

Of course, this exact wheelchair costs $9,000... yeah, as much as a decent used car :-( We are not at all confident that her private and/or Medicaid insurance will cover it. We are going to work the argument that this particular chair will last her up to 7 years (!!!) which is much better than the expected 2-3 years other wheelchairs last but I'm not confident. If only she could gain head and neck control she wouldn't need such an involved design. Insurance companies tend to argue that at her age, why can't she just use a regular stroller? Uh... because her little body literally collapses. Her trunk forms a 'C' and her head rests on her chest. This happens in her new car seat as well so I'm trying to get her a special needs one of those too. Sadly, this is just the beginning of my long future of fighting with insurance companies to get my baby the tools and products she needs to live a life that approaches "normal". Blah.

Other than these challenges, Gesina has been doing so well! Seizure free for 3 months!!! She sees the neurologist at the end of the month and if she makes it seizure free by then, we will discuss slowly weaning her off of the Phenobarbital (one of her 3 seizure meds). The Pheno makes her sleepy and having her more alert during the day would hopefully be a benefit for her development. She has also been using her hands more. Her upper body, compared to her legs, was more effected by her brain injury. So it's a huge deal that she has "found" her hands in the sense that she now can more accurately get them into her mouth. I'm optimistic that this means she may be able to walk if her legs aren't as affected. We'll see and in the meantime, here's hoping! Here's the most recent pic of her before the hospital trip. She awesome, inside and out!

Secret of a special needs mom

Now that Gesina is getting older and babies her age are gaining more skills, the gap between Gesina and her peers is widening. This means people now look at me a little differently when I'm out and about with my girl. This is going to get much worse as she no longer fits in her infant car seat. Why does that matter? Because now when we go to the grocery store or Target, she has no where to sit. She doesn't have the head or trunk control to sit in the cart. You know what the only solution is? I get to bring Gesina into the store in her wheelchair/stroller combo. Picture me coming at you down the aisle while I push my 15 month old in a wheelchair/stroller and pull a cart. Good thing we both have a flair for the dramatic because we are going to get lots of attention.

But you know what my secret is? That I love my child more than most moms love their child. Gesina is my inspiration, my hero, my survivor and if I end up demonstrating half the strength she has in the last year, then I will have lived a full life. When people find out about Gesina, one reaction is they apologize to me and offer pity about the circumstances of her birth. What they don't realize is that I don't need their pity. I'm the luckiest mom out there because I gave birth to my hero. I pity those who haven't had to fight for their child as much as I have in her 15 months of life. All this fighting for her, all the hazing of 37 doctors appointments in one year, has left me loving this child more than anything or anyone on earth. When Gesina farts and startles herself, I couldn't laugh harder. When she opens her mouth with enthusiasm because she loves banana oatmeal I couldn't be more proud. And when she sends one of her slow smiles towards her papa just because she finds his voice funny, my heart couldn't explode with love any more than it just has. Gesina doesn't have to run faster than other kids or use more words than kids her age for me to be proud of her or love her more. I love her just for her spunk and her audacity to be alive when many have told me should wouldn't make it. Anything she does from here on out is just icing on the cake.

So when you see a mom with a special needs kid, don't assume she is wallowing in self-pity. Look at the moms eyes and you may see that she is just like me. She may have already realized that she too has a secret, that her child is the coolest person she knows and that she wouldn't change a thing about him/her. Gesina may have a laundry list of health conditions that place her in the disabled category, but she is so much more than that. For those of you lucky enough to have met her, she is extremely dramatic, sends many sarcastic messages with her eyes, loves getting hugs and has continuously chapped cheeks from getting them kissed, likes to play "baby fingers" on her iPad with Rufus the cat, and thinks her daddy is the funniest man alive. Just imagine how much more personality she is going to share with us as she gets older!

Long time, no post!

Gesina's one year anniversary from being discharged from the NICU has come and gone (January 27th). To mark the day we did exactly what I said I wouldn't do after her nightmarish Halloween... She had doctors appointments all day. The day started with her vomiting her whole feeding in her carseat. After frantically hosing her and the car seat down, off we went to Milwaukee to see her Physiatrist (Cerebral Palsy doctor). Her CP doctor and therapists have decided it's time to start giving Gesina botox injections... yep, you read that correctly. She had botox injected into both biceps and her hamstrings. The theory behind it is here. I helped hold her down but the needle was pretty thin so she didn't completely lose it. Next, I whisked her off to get her PEG tube switched to a g-tube "button". I had read that this was a rather quick procedure so I wasn't too worried that Gesina hadn't eaten yet and I didn't want to feed her and THEN have the hole in her stomach leak while we changed the button. But alas, the training session lasted about an hour and a half. I kept jumping ahead of the nurse doing the training and she kept slowing me down. After the training, when she found out I was a professor, she finally realized why I kept jumping ahead. She had a script and a set pace and she was going to keep to it! Finally after the training, it was time to get Gesina's PEG tube out... they essentially "rip" it out! Imagine pulling a grape with a tube attached through a whole in your stomach the width of a straw.  Boy did she scream! She was essentially inconsolable for about an hour afterwards. We went to radiology to ensure the placement is correct and headed home.

At home I rushed to give her acetaminophen, tube feed her and attempted to get her to nap... then she vomited up her formula. By the end of the day, she had vomited up four formula feedings. We are currently on a solids only diet as she can't keep liquids down but she has been a champ with eating by spoon. Regardless of the pain and suffering she experienced on her anniversary day, she was still smiley and in a pretty good mood.

Since then, Gesina is doing well. She had an ear infection and a cough that won't go away. The cough is what makes her vomit liquids so we really have kept to an all solids diet. She is doing so well that I'm just going with it. Even now, nearly a week later, I'll try to give her a slow overnight feeding and she'll vomit it half the time. Guess we only need her tube right now for medicine!

Regarding the botox, Gesina seems to have more head and neck control. I didn't expect this but it is nice! It's not like she's ready to sit in a cart at the grocery store or anything, but it is an improvement. She also tolerated tummy time last night for 45 minutes! I've tried to "show her" how to crawl by helping her coordinate her movements and taking some of the weight for her and I think that motivated her for a while. She even smiled once while on her tummy! The effects of the botox last about 3 months then they inject her again. I'm not sure what she can accomplish while on the botox but it has to be better than what she would accomplish without it.

Her next appointment is with Neurology. We haven't seen seizure activity in over a month so I'm hoping we can continue our lucky streak. Gesina has been babbling a little more and I THINK she may be starting to babble in response to a person talking to her. I may be fooling myself but I'm hopeful. So in all, I still cope best when I expect the worst and hope for the best. This way, I have the opportunity to be pleasantly surprised every now and then :-)

The Holidays!

We've had such a relaxing and wonderful holiday that I haven't had the time to blog :-) Christmas morning was very emotional for me and my mom and dad got to laugh at me as I couldn't stop crying tears of joy/relief/pure happiness. Having Gesina home on that morning surrounded by family who loved her... was just too much awesomeness for me to contain! She was in an amazing mood as well. Gesina smiled, laughed, and enjoyed snuggles all day long. All the horrible Christmas's I've had in the past were erased by the awesome Christmas of 2014.

Gesina got a toy rattle that has really made a difference for her. Her $20 rattle is the first toy she will hold onto for a significant period of time. All other rattles or toys she would immediately drop after I put them in her hand. This rattle lights up with minimal stimulation and she continually tries to put the rattle in her mouth (she never did this before) and has also realized that she can rattle it on purpose! This toy provides more evidence that she is able to think and is understanding that she can impact her environment. She has a variety of other sound/light toys that I put near her and she can slap at. Sometimes she successfully hits the right buttons, etc. and I cheer her on. I'm never 100% certain she knows cause and effect but I cheer her on anyway as she'll figure it out on her own schedule. Her vision is either on or off, which is common with cortical visual impairment, and lately it has been off. This usually means she is experiencing a change in a different "system". I'm not sure what that system is (maybe cognitive?) but her vision is just not working lately.

I've taken her to a speech pathologist to work on her eating solids. It was a frustrating experience. I wanted to assess Gesina's ability to eat more textures. Unfortunately for me, that is not what happened. Instead I was introduced to the philosophy of the speech pathologist, which is to go slow with using a spoon so Gesina can learn to enjoy eating. Well, that's nice and all but (1) she's American, she will find a way to enjoy eating soon enough, (2) she vomits when she gets too much formula so less feeding by spoon is not really an option, and (3) she is really good with a spoon. Why would I use the spoon LESS when she's good with it? Sure, she may learn a "better" technique but in the process may learn to just eat less in general. So, screw it. The speech folks have a philosophy I don't buy into so I'm going rogue. I'll feed her the way I think is best which is more textures, flavors, variety and less formula. Just because she has a g-tube doesn't mean that formula is all I'm going to use to feed her. She needs more calories and experiences so I'll give her that... not more formula! She's 13 months for goodness sake, why would she need MORE formula. Blah.

Next up, every single doctor all over again :-( Seems that my price for getting the holidays off from doctors appointments are more doctors appointments in January. So we will soon get an audiology test to ensure that yes, she CAN hear (the mechanics are in working order), but DOES she hear. Then GI, Physiatrist, her g-tube button put in, Neurologist, NICU developmental clinic, etc. I'm supposed to follow up with the speech pathologist in 6 weeks but I'm thinking that is not a good use of our time right now. There is no magic pill or doctor who is going to make Gesina's life dramatically better so if there is no true contribution, you're off Team Gesina... until further notice. Maybe when Gesina starts talking we'll go back but until then, my speech therapist every other week is fine with me. 

Gesina's 1st Birthday!!

For her first birthday, I've created the modern version of a scrapbook, a video montage! It's been a long year and this whole journey started when I decided one day that I wanted a baby. So I had one, and she is perfect :-)

https://www.youtube.com/watch?v=Um5qG6SP6NQ&t=2s

I'll post pics from her and my "Survivor" themed birthday party soon :-)

Laughs, giggles, and reflecting on year 1

So the good news is after 11 months, Gesina laughed and giggled! And I got it on tape!

She is a daddy's girl and finds him to be the coolest person she knows. She also smiles at new voices. I'm not taking it personal that when I talk, she cries louder or when I pick her up, she fusses. I know I'm the one giving her meds and trying to get her to eat so I'll take the "hit" for now but I will turn her into a momma's girl eventually!

In an effort to add more fun to life, we went shopping. Dr. Aunt Amy decided to jazz up Gesina's look and she wears it well...

So things for Gesina are going well. She is having more good days than bad lately and you'd think I'd be ecstatic. But as it gets colder, the memories of the NICU are sneaking up on me. Seeing Gesina ready for her g-tube surgery, with all the needles and tubes, I had a moment where the NICU emotions washed over me like a tsunami. Of course, that was quickly put into perspective with the "she's going to die soon" crap. But I anticipate these emotions are going to come and go as we move into the winter months.

As we get closer to Gesina's birthday, I've been reflecting on all that we have survived in the last year. What we've gone through is truly mind boggling. Just when you think it can't get worse, another doctor tells you your baby's going to die. I now look at all the products marketed to new moms and their babies, with their constantly present disclaimers that "if left unattended, your baby could die" messages that used to terrify me, and I get mad. No mother should be made to live with the constant fear that something horrifying is going to happen to their baby. Cut new moms some slack. I was just reading recently that if I put a jacket on Gesina in her car seat, I could INTERNALLY DECAPITATE her. Seriously? That's the messages you bombard new moms with? Let the mom's with medically complex kids worry about their babies dying, because it might happen to us. Leave the mom's with babies born healthy alone to enjoy motherhood. It takes some serious soul searching and gumption to survive being continually told that bad things will happen to your child and that milestones may never be reached. To pull yourself out the depths of despair that you feel as you initially here these things, and come around to finding the silver lining every time is emotionally draining and exhausting. I'm sure at some point I'll smugly announce that this experience taught me "how strong I am" or "how to be a good mom" but I'd rather have not been tested this way. I'd rather not have to live with the knowledge that my beautiful, perfect baby girl may leave me early. No matter how much I love her, protect her, and provide her with the best care available. That this is NOT a just world, where only good things happen to good people; that I can't WILL her to good health. So those mothers out there with perfectly healthy babies, kiss them, enjoy those milestones and do NOT obsess about all those negative messages trying to scare you. As for me, I will continue to reflect on how we survived the last year and be a bit melancholy until December 4th. But come December 5th, we will begin Gesina's next year of life with a fierce focus on not just surviving our lot in life, but THRIVING. More adventure, more experiences, and more giggles. I can't keep waiting for things to "settle down" before we embrace all that life has to offer us, because settling down may never happen. Instead, we are going to thrive. We won't put off for tomorrow the fun we could have today. Gesina and I will run a 5K together, even IF I have to push her along in a jogging stroller (and a blanket over her face because she hates the wind :-)). Year 2 is going to be awesome and I can hardly wait.

Hope Floats

My neurologist, Dr. Shah called and we now have a little hope. Essentially, it all comes down to a judgement call. Clinically, Gesina fits the description of Ohtahara Syndrome (OS). So if you were to describe her seizure experiences, the timeline of her seizures, and the difficulty in controlling them with meds so far, she fits OS. However, if you look at her EEGs, she does not fit. She has not shown the suppression-bursts described with OS when you read her EEGs. Thus, some neurologists would conclude that she has OS, however Dr. Shah is not one of them. To make such a damning (my word) diagnosis, Gesina would have to be textbook OS for Dr. Shah to call it. Why? Because the label does not help her and it carries the weight of a miserable prognosis. It doesn't change her treatment plan of seeking the best meds to control her seizures as stopping the seizures is paramount to protecting her from further brain damage. Thankfully, she does not seem to be having seizures that we can't see clinically, meaning she isn't just seizing all the time.

So, what now? A few weeks ago we tried a new drug with the possible side effect of a "deadly rash"... well my sensitive little monkey started getting a rash so we had to stop that immediately. We have her started on a new drug now that is supposed to help "normalize" the EEG according to what I've read. The Children's hospital added another so she is on 4 seizure meds at the moment... we are weening her off one of them but it looks like we are super serious about getting these seizures in check. At this time, we can't say she doesn't have OS but we are not convinced she does. I'm okay with that because it really does give me some hope... maybe she won't die in a year?

As for the g-tube... get a g-tube they said, it'll make your life easier, they said... after 4 days of constant irritation, crying, vomit, and tylenol I went back the GI doc this morning. They've determined her pain isn't g-tube related (for medically complex kids, I think the "not my problem/domain" response is common). The gj-tube was suggested but thankfully she has finally stopped crying and I'm more slowly introducing food through the tube. I'm physically and emotionally exhausted at this point. But unlike everyone else I know, I haven't been as sad. The reason why? I get to look at this beautiful face everyday and she thinks that today is no different than last week... and that's the way I like it!