Wednesday, December 30, 2020

A Year in Review


I realize it’s been awhile since I wrote anything (my last update was literally a year ago). And I appreciate all of you who have reached out to us throughout the year to check that we were okay. We are definitely okay and have a lot to be grateful for. 

I didn’t write during the first half of this year because I just didn’t really have much to say. I was even offered an opportunity to be a guest writer in another special need mom friend's blog, and I couldn't come up with anything to write about. I like each of these posts to have some kind of emotional narrative that captures what it’s like to live this life. For the first six months of the year being isolated and quarantined at home meant we settled into a quiet slow routine. Social distancing protected Cyrus not just from Covid, but from getting sick in general, and he didn’t get sick once in 8 months! It was unusual and amazing for Cyrus, but it was also relatively boring and not fodder for a story. And during the second half of the year, we've just been insanely busy without a moment to spare. But I want to share our experiences this past year with you just the same!


I implemented emergency distance learning last spring semester, and because I was recording my lessons instead of delivering them to five different classes five different times, and because I had been directed to keep the workload light for families that were struggling in a multitude of different ways, it didn’t take as much time to prepare. It was less rewarding for certain (though I had three students that adopted me and made a point of coming to all my live office hour sessions, which made them far less monotonous), but it was also far less emotionally draining. 


And I found myself more present with my own family and that was nice. I ate lunches with my husband, and those lunches were composed of actual cooked meals rather than whatever snacks I had managed squirrel away in my desk drawers that month. I played with my children, pet my cat, went for walks, and just sang and danced a lot with children. 


For Cyrus, well, he didn’t get a whole lot out of emergency distance learning. He only had two half hour live sessions per week, plus virtual therapy sessions. He wasn’t practicing his skills, and he definitely lost some progress, but he definitely recognized his teachers and therapists on screen and enjoyed getting to see them! (Which honestly, is the part I care about more, and why I send him to school!) 


Virtual SDC class!

Graduated Pre-school!


In June, an off hand comment led me to looking up real estate listings. And between a few very very lucky stars lining up (one of which was getting a settlement from my car accident last January. Blessings in disguise!), it felt possible to maybe buy a house. Like maybe. Even during a pandemic, we were on the absolute bottom of this crazy housing market. But the husband and I agreed to try, knowing it could take dozens of offers and months and months of time before anyone might accept a low ball offer from us. 


And in the first list our realtor sent to us, the likelihood of success felt even more stark. In the entire county, there were eight houses in our price range. Eight. Of those eight, only two of them didn’t have a flight of stairs leading to the front door, and were therefore somewhat close to being almost wheelchair accessible. (They each had a step or two in on the way to the front door). 


Of those two, one sold the very next day! 


So in our initial outing, we only got to look at one house. And it was legitimately a really nice house! It had an open living area where the living room, dining room, and kitchen are really all just one large room! Which is fantastic when you have to be moving a wheelchair around from one area to the next. There were three bedrooms! Most of the houses in our range only had two, and this was so nice because it meant Eliana could have her own room without having to share with Cyrus whose breathing machines might keep her up all night. And of the three bedrooms, there was one with an adjoined bathroom that had a full tub without any doors in between the bedroom and the bathroom. That meant we could potentially install a hoist track in the ceiling to go from Cyrus’s bed to the tub. And it had a backyard with this giant beautiful tree! We really liked the house (it is even closer to the children's hospital!) and thought about making an offer on the spot. But I thought it prudent to actually see what else was out there. (Kyle may have disagreed). 




And we spent the next day looking at condos. We limited our search to ground floor units and units accessible by elevator. And we saw some really nice (slightly more affordable) condos with tons of space and three bedrooms, but every single one of them would have all been really annoying to try to live in for accessibility reasons.


First thing we learned - there’s no such thing as an actual ground floor unit in this area. The ground floor is always the parking garage. And those parking garages pack cars in like sardines. There wasn’t a single handicapped space in any of those garages, though there was often a van accessible space in the guest parking lot, but only one and usually it was already occupied when we arrived, suggesting strongly that we would always be competing with someone else for that one spot.


Parking in the assigned space always would have meant stopping the van in the aisle, unloading Cyrus and then just leaving him there in the aisle (because there was no space to tuck him between cars), then getting back in the van and parking it, and finally exiting the vehicle and retrieving Cyrus. 


And then elevators! The elevators were so small. Fitting the wheelchair and three adults in the little compartment was a squeeze. I don’t know how anyone gets their furniture into their condos using these elevators, but I figure mattresses are flexible and pianos aren’t actually that big even if they are heavy. But Cyrus’s stander? I don’t know if it would have fit. 


Cyrus's Stander

There was one complex in particular where you exited the elevator into a lobby for your floor, then you had to walk through a stairwell into the hallway that led to the actual condos. And the stairwell was a problem because it had heavy doors that were always trying to close on you. And you would open the first door, push Cyrus through, but then had to continue to hold that door open so it didn’t slam into Cyrus because there wasn’t enough space to push him past it, while trying to reach for the second door that was just slightly too far away to reach when you’re behind Cyrus. When you had both doors open, you had to hold them awkwardly, while also getting Cyrus moving fast enough to make it over the threshold. It was awkward and it was irritating.


With one exception, the condos had less wheelchair friendly layouts as well with narrow hallways or tight corners. There was one condo that had a friendly layout, but it was a really small condo with only two small bedrooms. And it felt like our current apartment was able to meet our needs better than this condo would, so it didn’t really feel worth it to move.


We could have overcome these small irritating obstacles. If we had really needed to, we could have figured it out. But we also knew that they would serve as constant and daily irritations that would make any stressful period that much more challenging and would just wear away at our emotional health and resilience over time.


The whole experience was very illuminating for us in how difficult it is to find accessible homes if you’re physically disabled in some way. Especially when you live in a hilly area. And to some extent I already knew this, but when you live it, it’s more real. And it just made me sad. 


But looking at those condos solidified one thing for us personally. We were definitely willing to make an offer on the one house! 


And if our offer was not accepted, then we were committed to waiting until there was something that did meet our needs because if we were going to buy something we should at least want to live there.


Much to our shock (and the selling realtor apparently), our offer was accepted! It is likely because they liked our offer letter that told Cyrus’s story because apparently they had refused higher offers. The whole process from looking at prices on a whim to applying for a loan to looking at houses and then getting an offer accepted - took 16 days! 


And then suddenly we had to move! I wasn’t ready! I thought we were going to have months! That’s what everyone had warned us about.


There were lots of bumps through escrow both with getting our loan finalized and then with the house itself. There were like four different instances where I was confident that it was all going to fall through. 


And right in the middle of this crazy intense process, the school started again. And if emergency distance learning took less time than a traditional teaching year, distance learning in the fall was an entirely different beast because we were now offering live instruction to our students. 


The planning load alone made me feel like a first year teacher all over again. I’ve gone back to having to stay up impossibly late making sure lessons are ready for the next day or to get grades in on time. But I also had to learn how to deliver content in this new medium of Zoom, (like how does one do physics labs when no one has the same stuff at home?!), learn how to build relationships when you can’t talk with students one on one very easily, and how to manage a virtual classroom. 


Though trying to teach high school physics is difficult when your son’s feeding pump goes off at semi-unpredictable times, or when your 18 month old daughter runs in and wants to shout her ABC’s or sing Baby Shark at your students! (They apparently love her, and told me they were okay with learning no physics whenever our childcare fell through. Sweet though they are, I happen to care about their education!). 


Luckily, I’m a tech native and not a perfectionist, our realtor was magic, the sellers of the house were incredibly kind, and the one other family that we’re in regular contact with through a nanny share was enthusiastic and kind enough to help us move! And in the end, everything worked out! And we live in a gorgeous house now!


Somehow… It’s still rather surreal.
  

We settled into a new routine. Life does not feel as quiet or slow as it did in the fall. I still get to eat lunch with my husband, but I’m definitely working full time plus extra again. Eliana still goes to the nanny share most days. Cyrus has his own Special Day Class Distance Learning! And let me tell you, his distance learning program this fall has been amazing! He loves it!


Basically, his teacher sends us a pack of art projects and lesson materials every two weeks or so. (Before you give your child’s teacher too much hell for not doing this for you, keep in mind this teacher only has like seven students total).  And then during the zoom class, she does the videos, songs, directions, and movements that they are trying to teach the students. But she directs Kyle in how to do the activities with Cyrus! So now, instead of a nurse guiding him through his art projects, he gets to do it with dad!


SDC class in the Fall!


He totally lit up this fall with this kind of instruction, and dad is his new favorite person all over again. 


We did pretty well until November, during which time we all got sick (with a rhinovirus - not Covid) at the same time. It made for a really rough week, but we all recovered. Or so we thought. 


Just a normal [sick] day.

Feel better, Cyrus!

Cyrus ended up relapsing and getting pneumonia. It is likely that he aspirated his own phlegm from the sickness into his lungs, then bacteria grew in that fluid, and then turned into pneumonia. We managed to keep him home for a week caring for him ourselves, but then after a really rough night we sent him to the emergency room. He was the sickest I’ve honestly ever seen him, and I was beyond terrified. But as sick as he was, he also ended up having a remarkably fast recovery once he was in the hospital with round the clock care and on antibiotics. 


He was home for a few days. Four or five, and he was breathing better, but he wasn’t coming back. Like he wasn’t engaging or smiling. He was flat and emotionless. Usually when he’s been sick, he’ll have this phase of what I call “post illness joy”. And that just wasn’t there. Then there was a day where he was crying constantly and his belly and one of his arms were really swollen. And he had stopped pooping entirely. 


His sister dotes on him no matter how he's feeling! <3

She is just the sweetest!

Worried about a blockage in his GI track, he went back to the hospital. They determined there was no physical blockage, but rather just a build up of gas that wasn’t able to make its way out of his system for reasons that were unclear. They did a ton of tests, and they found something! 


He had c. diff! 


Fucking c. diff! 


Ugh!! It made sense (the antibiotic course makes him vulnerable to it), but man I was pissed! So, now we’re back to operating on c. diff protocols. He has a new med that initially has to be given four times a day. We are changing diapers with disposable gloves, and afterwards hand sanitizer is not enough. Hands have to be washed for thirty seconds minimum. The floor and the wrestling mats are getting steam cleaned regularly. Anything that gets any poop on it has to be cleaned with bleach, and his laundry has to be separated from everyone else’s, and clothes that get any poop on it has to be bleached.


Do you know how hard it is to get bleach wipes right now? I’m sure you do.


Anyway, once we got Cyrus’s new meds (with a lot of grief from our insurance company - I wrote a rant about it, but I’ll spare you), he got to come home again. And we did finally see some peaks of that post illness joy!


There's your smile!

The last two weeks have been a lot better for all of us really. (Well, Elli is in the last phase of a bottle wean and hating it, but otherwise, she’s loving life!). We were finally able to start unpacking again and everyone has a room now! We finished Elli’s room last week. We’ve finally figured out how to organize the kitchen to get all the pots and pans in a cupboard. And we’re just starting to put pictures up on the walls! It’s starting to really come together!

Overall, we feel rather fortunate during these times, and we try to take nothing for granted.


We are wishing everyone so much love, health and resilience for all the foreseeable future! Much love!!






Tuesday, December 10, 2019

ADSL Has Wings

Many of our ADSL families have been working to fundraise revenue to support a study on ADSL that is currently taking place in Italy. This project was really pushed forward by our lovely Benedetta Contardi, who met with many professors and researchers and convinced them that this was something they wanted to study. And she's also been hugely responsible for spearheading a lot of the fundraising as well. Anyway, she has asked me to put together an update for all of you so that nothing is lost in translation.

Doctor Andrea Bartuli, who works in the Rare Diseases and Clinical Genetic Unit of the Bambino Gesu Children's Hospital in Italy, is heading up a research study of ADSL. This study is in contact with 25 patients with ADSL around the globe and has collected survey data from all of these families. They recently presented their initial results to others in the rare disease field at a conference in Rome.

They are trying to 1) use our survey data to determine a relationship between the specific genetic mutation a patient has and the severity of their presenting symptoms, 2) develop models for the causes of cellular deficits caused by ADSL's different mutations (this is usually the first step in understanding a disease and it doesn't currently exist for ADSL), and 3) better understand the errors in metabolism caused by ADSL in hopes of developing therapies for patients.

The only public part of the survey data that I can see at the moment, is that the team has classified 23 of the 25 patients as severe, and 2 as mild.

The more exciting part (in my opinion) of their presentation was that they have given ADSL to house flies! (I can't share their DNA editing technique because their paper hasn't yet been published). Apparently even house flies can even have seizures.



I kinda feel bad for the fly. But I'm really grateful that they can do this.

The idea is to give flies different mutations of the ADSL gene, and see if we can figure out a relationship between the specific mutation, and the severity of symptoms. And also giving the mutation to flies (and eventually maybe to mice, if I'm remembering correctly) may also help us better understand which cellular processes are affected by ADSL deficiency because a fly is much simpler to understand with a lot less confounding variables to control or confuse the results. We actually already know that ADSL substrates seem to have some effect on various cellular processes including: mitochondrial metabolism, glucose homeostasis, and may be an epigenetic modifier (whatever that means...). 

Anyway, apparently the presentation caught the attention of two other researchers who may soon also be joining the project.

On a slightly unrelated note, the research team in Paris, led by Doctor Zikanova, that is also working with ADSL families in France, and has apparently contacted that research team in Italy about a possible collaboration. Keep your fingers crossed! The more we know, the better we can take care of our children!

If you want to continue to support this research, you can donate through our GoFundMe campaign. Benedetta periodically posts receipts to our private group of money that is donated to the university from this campaign. Or you can reach out to her for directions on how to donate to the university directly if you don't want GoFundMe to take their small cut.  (I personally find that the GoFundMe takes the hassle out of donating so I can donate more often. I tend to donate every year around Christmas and my son's birthday in February).

If you want to contact any of the researchers directly with questions about their research, here are their names:

You know you want to support these kiddos!!

Saturday, July 20, 2019

Desensitized


I know I’ve mentioned before that Cyrus is often difficult to read. His emotional expression is often extremely subtle and easy to misinterpret if you don’t spend a lot of time with him. But over the years, I have learned to recognize the face he makes when he wants a pacifier, and the sound he makes when he wants to be out of his chair or is tired or uncomfortable. Or when he’s out of it and probably just had a seizure. He still rarely ever cries so when he whimpers my heart breaks because that is usually the top and I know that he’s miserable, but I don’t necessarily have any idea why. There’s a particular grimace that even his therapists mistake for a smile. Though I’m happy to say he’s never been able to fool his classroom teachers!
Then, when he actually cries (happens like maybe five times a year) that’s the end of the world. Luckily his good moods are hard to miss, and are to be cherished because sometimes they become rare. 
Then we have Miss Eliana. She smiles at the drop of a freaking hat. The girl is just so social and her face lights up! She also screams anytime mommy walks out of the room. She cries often and I have more reason than most to recognize that’s a good thing even when I want to pull my hair out. It’s a good thing because it makes us pay attention and her needs get met. She’s constantly giving bids for attention and it feels so natural to respond.
But in learning to meet her needs, I have caught myself missing Cyrus’s subtle signals. Like she is so loud and he is the most soft-spoken creature. Even when I’m looking right at him or playing with him, she will talk, yell, or whatever, and I turn to her instead.
I have caught myself being a little desensitized to him and I’m struggling to find a way to balance meeting both of their physical, and especially emotional needs. Of course, Kyle is here too, but it’s still difficult because he and I have needs too! (Really, I think you need three adults to make a household work. One to watch the kids, one to do chores, and one is taking a break. Roles then rotate as needed!) 
I’m pretty good at meeting her emotional needs most of the time. (Though, this four-month cognitive leap and sleep regression is absolutely brutal! Just when you think you’ve got this baby thing down, they go and change all the rules on you). But when Cyrus is having a seizure, or I’m giving him meds, she often has to wait. Like her emotional needs get prioritized over his emotional needs just because she’s louder about communicating them and advocating for herself. But his physical needs come first. At least in the moment. And she is not happy about this. At all. I know she will eventually understand, but right now her confusion about why in this moment I can’t be with her, kills me. 
And I find myself wondering if this is why the oldest child in a family often has more confidence than their younger siblings. Maybe they just trust the world more because for the first 6 to 12 months of their life, they were the only child in the household. And when they cry it is easier for their parents to be responsive. Whereas, the second child has to compete with an active toddler for attention. Maybe the second child is left crying for a minute to chase the two-year-old out of the kitchen or something. And they just don’t learn early on to trust the world as easily.

I don’t actually know. These are just things that I ponder when I’m up nursing at two in the morning. 
Cyrus at least usually sleeps a solid ten hours a night! So, she gets all the attention when the moon is high. Perhaps, that’s why she has been so slow to improve in her night sleep. 
I’m so tired.
It’ll get better. I will get better at balancing their needs. Eliana will get better at understanding when I need to help her brother, and she will learn that I will meet her needs in just a few minutes. (Someday, she’ll probably be better at reading him than any of us!). She will learn to sleep more than three hours in a row at some point. (Right?) And maybe, I’ll even learn how to put her down for a nap rather than having to hold her through it. 
It will get better. 
I know it will.

Friday, June 14, 2019

In Search of Healthy Poop



When we were first diagnosed with clostridium difficile (c. diff) last November, Cyrus's school nurse didn't want him to come to school anymore. I remember being frustrated and thinking it wasn't a big deal. He had to be on antibiotics and symptom free to come to school, and he had to have his own quarantined changing area separate from the other children. I remember feeling this was completely overboard. Now, eight months since Cyrus had his first c. diff symptoms, where we are STILL fighting this, I realize how very very wrong I was.
Because c. Diff sucks! It's incredibly contagious. Hospitals can't seem to get rid of it. Spores can live on surfaces for like five months. It's become antibiotic resistant. Hand sanitizer and most disinfectants won’t kill it either. The only thing that works for sure is heat and bleach. If you can’t get the diarrhea under control it can kill you through dehydration, or if it colonizes your colon it can kill you by causing your colon to burst. Approximately half a million people in the U.S. get it each year, and 29,000 of those people will die within a month of their diagnosis.

People are most likely to contract the bacteria when staying in a hospital or nursing home, especially if they've recently had a course of broad spectrum antibiotics because antibiotics wipe out your good bacteria in your gut, making it ripe for colonization by these c. diff spores. Having a g-tube is a risk factor for contracting c. diff as well because the invading evil bacteria doesn’t have to go through the soft tissue of your mouth and throat where your immune system is active. Instead, any of this bacteria that gets in his tube has direct access to his gut. C. diff is more likely to affect seniors over the age of 65, but there are now documented cases of it tearing its way through day cares too.
As mentioned last time, Cyrus had a second relapse of c. Difficile after his bout of pneumonia. This was attributed to his use of broad spectrum antibiotics. At that time, we were referred to a GI specialist at UCSF for exploring the idea of a fecal transplant. A fecal transplant is where they take the poop from a healthy person and insert it into your system. The idea is it will reset your gut biome by introducing it to all the good bacteria that should be there. It has been shown to be remarkably effective in treating a bunch of different gut issues and infections, including c. Diff. There is less research on the ideal gut biome for pediatric patients though, so they usually wait until your third relapse before they recommend the procedure.
In March, we met with that GI specialist and made a plan. She ordered the fecal transplant procedure so that it could be prior authorized in advance, but we waited to schedule it. In the meantime, he was put on another long-term course of vancomycin (we call it vanco), a narrow band antibiotic that targets c. diff. And we were told that if he ever had to take a broad-spectrum antibiotic he should take vanco at the same time.
He made it through that course, and lasted an additional nine days before his symptoms reemerged on a Friday evening no less. (Fridays are annoying because you can’t talk to doctors as easily). We made the executive decision to put him back on vanco because we still had refills left and letting it run unchecked is awful! And his symptoms cleared up by Sunday. I called the following Monday to schedule the procedure anyway because while these long vanco courses seem to keep things at bay, they are clearly not getting rid of the underlying infection completely. Then I messaged the GI doctor for further instructions.
She wanted us to take another lab test to confirm that his diarrhea was caused by c. difficile. (So annoying!!) She said we could try to test while Cyrus was still on vanco, but that if it came back negative, we should take him off, let symptoms reemerge and test again. All before our scheduled procedure, which is less than two weeks away at the time of these instructions!
I can't explain how panicked this approach made me. I don't want him to go through an unnecessary unpleasant procedure (it’s the same as a colonoscopy). But letting c. diff go unchecked scares the crap out of me! Blood in the stool is considered a severe symptom, and is a sign your colon isn't doing well. The first time Cyrus had blood in his diaper (December), I did research on this disease. That's when I learned that this can kill you. That once blood shows up it could be just a few days away from doing just that. Cyrus has gotten to that point twice now.
Not to mention that I have a three-month-old baby in the household as well and this stuff is so contagious! I already have separate changing areas and mats for both of them. I do their laundry separately. I’m constantly wiping counters and bins (and cell phones) down with bleach. Like I don’t want her to get this either, and letting him get to the point where he has symptoms puts her at risk too!

So, I
really don't want to let this go unchecked, but I know from prior testing that if he's on vancomycin, the test will be negative. So, against my maternal instincts we took him off vanco, and I became an anxious mess. He can't tell me how much his tummy hurts or doesn't. I was smelling all his diapers (a particularly putrid strong smelling odor is a telling sign of c. diff apparently), obsessed with whether or not the smell is the same or worse than the day before.
Four days in, he had a stool that was so liquid we couldn't collect a sample because his diaper absorbed it all. That's got to be c. diff, right? But the next day, he has a blowout and it's definitely looser than normal, but not quite to what I would call diarrhea. It definitely is pungent though. We can at least collect a sample. He was also very cranky and lethargic all morning. (Does that mean his stomach hurts?!) I don't like it. But since we got a sample, we can put him back on vancomycin.
Which worked wonders! The next day he was happy, active, and his stool was more solid. And I was feeling loads better.
Only the freaking test comes out negative! (He had a positive test in March). I swear life is gas lighting me because now I'm doing nothing but questioning my perception of reality. Like his symptoms abating with the introduction of vancomycin, and coming back with its absence suggest that c. diff IS the culprit. Maybe I just collected a sample too soon? Or maybe he has something totally new that also responds to vancomycin? (Please, no!) Or am I being hysterical and seeing what I expect to see? (See! Gaslit! It sucks when you feel like you can't trust yourself).

Anyway, the GI doctor said we should proceed with the colonoscopy anyway to see what else could be going on that might explain his symptoms. She said that if it looks like there's damage caused by c. diff we could do the transplant at that time anyway.

Now I'm wondering (panicking) if I keep him on vancomycin and it is effective in suppressing the c. diff, will his colon look like it has c. diff even if it does. Should I take him off and let it run rampant just so that if he still has c. diff. his colon will look bad enough to warrant the transplant? Will he get a colonoscopy now, not get the transplant, and have symptoms reemerge later and need the transplant anyway? Like, I don't want him to have to do this twice if we could just do it once! It requires general anesthesia and a colon cleanse the day before, which many older people in my life tell me is not fun.

I'm just spiraling. And I hate c. diff more than ever. And the crazy thing is that this could kill him if I just let it go and it's not an infection that is even related to his disorder! Though apparently, he most likely picked it up at one of his various doctor's appointments, so maybe if he didn't have this disorder, he never would have been exposed to it, but that's not the point!

Anyway, I sent all my spiraling questions and concerns to the GI doctor after her latest set of directions. And her response was "We can do the transplant. No worries! ;)"

I feel so so so relieved. But also, why couldn't you just say that last time, so I didn't have to spend the last two days spiraling in anxiety! Or better yet, why require the lab test at all (apparently, I've been told by a certain beloved Infectious Disease Doctor that many doctors put too much trust in the lab test, and that the interaction with vancomycin is more indicative of a c. diff infection) when our original plan was to schedule a fecal transplant as soon as diarrhea showed up a third time?!

Anyway, I'm fine now. (Let’s pretend anyway). And Cyrus will hopefully be fine soon.

EDIT: I wrote this over the course of the last two days, and was just editing for posting today. And while I was editing, the GI doctor sent us a message basically trying to scare us into backing out of the procedure (apparently, someone died recently from a fecal transplant because they contracted e. coli from the donated fecal matter). I just wish that if she felt that this was the wrong decision, she would just say that and explain why, rather than trying to manipulate us into the decision she wants us to make. (New Edit: apparently, it's less likely she's trying to manipulate me, and more likely that she's freaked out herself because the FDA issued a warning about this the day before - story now linked). If she insists on a positive test and wants to postpone it until we can confirm that it is in fact c. diff, I’m open to that too! I just don’t want him to get a colonoscopy and NOT get the transplant. So, I’m back to spiraling. Yay…

...

General update:

Cyrus started the ketogenic diet six weeks ago. This normally requires a hospitalization, but they made a special plan for us to implement it slowly after struggles with pneumonia and having a new baby at home who doesn't need to spend ANY extra time in a hospital even as a visitor. So we’ve been introducing the diet slowly, and just three days ago made it to the full 4:1 ratio of fat vs protein and carbs.

Every time we’ve gone up on the ratio, Cyrus has reflux, irritable moods, and takes really long naps. After about three or four days most of those symptoms seem to abate. And the best news though is that his seizures have dropped from 2-3 per day, to 2 per every six days! He’s been so much more aware when he is awake (and has happy bouts in between the irritation) and I think him not having seizures everyday just allows him to be more present! It’s awesome.

In conclusion, the keto diet is definitely rough on his system (no constipation though! Maybe c. diff is helping with that…), but appears to be helping him neurologically a lot. We are cautiously optimistic, and are going to stay on the diet for 12 weeks and then reassess. (Some of Cyrus’s seizure treatments in the past have had a bit of a honeymoon period, only for the therapeutic benefits to wear off after 4-6 weeks).

Eliana is fourteen weeks old. I can say that as of three weeks ago she doesn’t have c. diff (yes, I had her tested after mucus started showing up in her stools). She's just broken 11 lbs and is capable of sleeping just over six hours in a row, but she thinks five is fine most nights. She's been busy experimenting with tactile sensation and textures and strange vowel sounds that mommy can't emulate. She's mastered the call and response part of conversation. She grabs everything and tries to put them in her mouth, though she's been mostly unsuccessful as her own hand gets in her way.

She enjoys watching her brother roll around all over the place and likes to sit with daddy while he's watching anime. She's decided that bottles aren't THAT bad if you let her take them on her side and baths are actually kind've fun... maybe. But mommy leaving for almost five hours to go to a graduation is absolutely unacceptable! Last week, she's figured out she can get out of tummy time by rolling to her back. And just yesterday, she started laughing!!