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!!

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.

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!!

Bringing the Hospital Home

The day Eliana and I were discharged from the hospital, we were also pushing (via phone and text mostly) for Cyrus to be discharged from his hospitalization as well. The team’s original goal for discharge for Cyrus had been for him to make it 24 hours on room air without any oxygen desaturation events. This proved to be especially difficult, because it turns out that Cyrus often desats during and after a seizure. This was probably occurring before the pneumonia, but we didn’t have any way of knowing so none of us really could determine what Cyrus’s baseline even was. It could be that even Cyrus’s baseline would not meet that criteria. In any case, it was clear that our criteria for discharge needed to change, but the pulmonologists on the team disagreed on what the new criteria should be. 

One of the doctors wanted to get him as stable as possible, needing almost no breathing support at home. They argued that with a newborn at home and with me recovering from surgery, that they weren’t confident that we could meet Cyrus’s needs at home, and that if we couldn’t during this critical recovery period, it could result in a regression or relapse of the pneumonia.

The other pulmonologist wanted to get Cyrus out of the hospital as quickly as possible, now that he was stable again even if he was not completely better to reduce the chance of him getting (more) secondary infections while in the hospital. This pulmonologist also seemed to think that us being able to take Cyrus home would actually be less stressful for us, even with a newborn at home. I was inclined to agree, but when you miss rounds, you don’t have as much ability to sway care decisions (or you have to wait 24 hours for your input to get shared to the with the whole team). 

They ended up compromising. Cyrus ended up staying one more day to insure he was remaining stable, and then we were told that they would be sending the hospital home with us in the form of a bunch of respiratory equipment so we could administer his breathing treatments ourselves. The lead pulmonologist told us that Cyrus is at high risk for respiratory issues and that it was a good idea for us to have access to this equipment in general, but that it was easier to justify to insurance companies while he was ill.

Cyrus was so excited to be home! He relished in being on the floor and able to move around freely. Bringing him home before he had completely recovered definitely felt like the right call. Though when we put him in his shake vest and strapped him into his wheelchair for that first breathing treatment, he looked so betrayed. But alas, he needed the breathing support.

A breathing treatment for Cyrus involves him spending 20 minutes in a shake vest, while simultaneously breathing in albuterol with a nebulizer, and then going through 15 repetitions of cough assist. All of this punctuated by suctioning as needed. 

The shake vest is basically just a blow-up vest hooked up to a vacuum that pumps air in and out, to make his chest vibrate. The idea is to loosen up all the fluid in his lungs, so it is easier to suction up or cough out. The albuterol is called a bronchodilator, and it basically causes the tissue in his lungs to open (dilate) more so that it can absorb more oxygen. The cough assist is the most traumatic of them all in my opinion, as it involves sealing a mask over the mouth and nose, forcing air into his lungs, and then pulling it back out hard enough that it makes him stick out his tongue involuntarily. But all of it in combination, helps to get the gunk out, or close enough to out that you can suction it out.

We were also given a pulse oximeter (measures oxygen levels in your bloodstream) so we can better assess when a breathing treatment is needed, and an oxygen concentrator, which just pulls oxygen from the air and creates a more concentrated version of it, so we can give oxygen to him when he needs it (without having canisters delivered regularly to our door). 

So, we are adding amateur respiratory therapist to our list of ever-developing medical skills. 

We started with three breathing treatments a day, which was rough for Cyrus because it meant an extra two hours in the wheel chair a day doing an activity that he absolutely did not enjoy. But man, any moment that he is on the floor, he has been thrilled! It’s like being stuck in the hospital, and to a lesser extent trapped in the chair, makes him appreciate the time where he is free so very much! 

Each week, we’ve weaned him down by another treatment. And last week he was supposed to be off completely, but by day three he sounded congested and was super low energy again, so we hooked him up to the pulse oximeter, and he was dropping down to 89/90 every few minutes (being like 95 inbetween). And honestly, I don’t think this is lingering pneumonia. Because I’ve seen him get like this before. I feel like occasionally he just aspirates too much and slows down for a few days. Or it could be seizures causing desat events as well as was happening in the hospital. I just didn’t have the ability to check his O2 levels and we didn’t have anything to do to help him when he got like this.

So, now it’s cool that we can check and that there’s something to be done about it on bad days as we now have a mini hospital in our closet. It’s not cool that he clearly has some respiratory issues in general that seem to stick and hover around. But I guess it’s a good thing that we’re learning to recognize desats (like he gets really pale – you almost don’t need the O2 monitor) in addition to seizures so we are more equipped to take care of him than ever!

General Update: 

As mentioned, Cyrus has been in a great mood since coming home from the hospital three weeks ago. And this behavior has lingered, which has been delightful to be around. His seizures have been unpredictable and inconsistent. He’s had days here and there with no seizures, which honestly is the first time in months. But inbetween, he’ll have five seizures or two or three pretty significant ones that last 2-3 minutes (and completely wipe him out). 

This week, Cyrus suffered a relapse of C. difficile. This bacteria’s resurgence was likely caused by the broad-spectrum antibiotics used to treat his pneumonia. Basically, the antibiotics wiped out most of his gut bacteria, making it easier for the C. difficile (antibiotic resistant) to take over once again. Repeated episodes of blood in his stool caused a bit of panic on my part and I reached out to his pediatrician, the complex care clinic, and the GI clinic all at once for guidance. Eventually everyone responded with slightly conflicting medication schedules an advice. Haha! Now, we get to attempt to sort through that. If this medication does not have lasting effects, we may be exploring the possibility of a fecal transplant. I swear, it’s never a dull moment! (I would love some dull moments!) 

And Eliana is doing her job of eating, sleeping, and putting on weight. She’s definitely pretty loud when she wants something, and I feel has desensitized me a bit to Cyrus’s fussing, because his complaining is so mild compared to hers. In the last few days she’s become far more expressive where she just makes the cutest faces! She also seems to have learned the routine. For example, I always change her diaper before eating. So now, she stays calm during the diaper change if she’s hungry because she knows what’s coming next! 

Kyle has made it back to work, and I have continued to gain back my mobility and independence, though going out by myself still feels like a monumental task. I can do it though. Since I have weight lifting restrictions, Kyle has been mostly taking care of Cyrus, and I have mostly been taking care of Elli. But we’re making strides in spending time all together in the same room rather than being exiled in separate ends of the apartment. 

Cyrus seems very interested in Eliana. He coos at her when she cries, reaches for her when she’s on the ground with him, and one day last week he became noticeably upset when she left him (to go eat because the child is voracious!) on the floor by himself. In turn, when she’s on the floor she’s always watching him. It’s cool to witness.

Baggage of a Special Needs Mom with a New Baby

As I imagine most first time parents are, when Cyrus was first born I was a nervous wreck. I remember being discharged from the hospital with a four-day-old baby and just getting slammed with the horrifying thought that I was completely responsible for this helpless child. 

I remember being so anxious much of the time. I’m certain that sleep deprivation and crashing hormones contributed. I had nightmares of discovering him not breathing, I would start awake and rush to his bassinet or crib, and mostly succeeded only in ruining his or my husband’s sleep.

The first time I was driving with him in the car, I saw all the other cars on the road as potential assassins! I constantly evaluated how I would maneuver the vehicle in the event of a collision to minimize the impact to the rear and side of my car to protect my infant son. 

I worried that he wasn’t eating enough, and then when he started spitting up constantly, that I was feeding him too much in my anxiety that he might not be getting enough.

Eventually, as the days passed without major incident (and the hormones leveled out), and the intense anxiety gradually lifted, I learned to integrate the motherhood roll into my being and function as a regular person again.

Now with Eliana, I have found that my post partem fears have taken a different form. Her movement is often jerky and random, often with her hands floating out in strange patterns in front of her face. And it looks so familiar – it looks exactly like how Cyrus moves his hands and arms randomly at times. And I have to remind myself, no, your daughter doesn’t have chorea. Your son has chorea, which makes him move like an infant. Your infant daughter is supposed to move that way. It will fade as her basal ganglia develops.

And if you move her too quickly, both her arms will extend outward dramatically all at once. And without thinking, my mind instantly jumps to infantile spasms! No, your daughter is not having the infantile spasm seizures. This motion is called a startle reflex. It happened because you startled her. And it’s rather adorable. So calm down. 

Her lower lip starts to tremble or quiver at times. That’s not a seizure is it? And it really doesn’t look like one, and if anyone would be able to recognize a seizure, it’s me right? Like I’ve learned to identify any and all of them (except absence seizures. Those are tricky!) because Cyrus has had all of them at one time or another. But it’s like I simply can’t help going there!

I have been asked a few times if she’s healthy, both before she was born and since. I’m not sure if this is a common question – I don’t remember being asked this when I was pregnant with Cyrus – or if it’s a reaction to the fact that they know I have a son with special needs. I always hedge in answering the question. I tell them that she doesn’t have ADSL and that she has no chromosomal abnormalities. I can never bring myself to say, “yes, she is healthy” because I don't know and I can't promise that.

But I still look for reassurances myself. She’s ten days old and already has better head control than Cyrus. She is loud and is incredibly quick to communicate her displeasure and needs, whereas Cyrus has always been remarkably (maybe impossibly) calm and chill. These are signs that she is developing normally and is healthy. 

But I also know better than most what it’s like to be the one in a million with the disorder, and that there are absolutely no guarantees. I want to say that she is healthy. By all standard observations and standards, she is! But I can’t truly know. 

I can only love her.

General Update: 

Eliana and myself made it home exactly a week ago on Friday. She is currently ten days old. She is really good at eating – she brought in my mild supply so fast and started putting on weight even before we left the hospital, which we were told was uncommon. She is also good at sleeping, sometimes giving mom a whole four hours in a row of respite. I think the plentiful milk supply may have something to do with that. She initially hated being burped (it interrupts her feeding!), but has since learned to trust that the process actually makes her feel better. Diaper changes are the absolute end of the world apparently. I especially enjoy watching her right after she has eaten and stays awake because her eyes are open and actively taking in everything around her. She seems positively riveted. And the awe in her face is just amazing to watch. 

Cyrus came home from the hospital the day after we did. His pneumonia has mostly cleared as far as we can tell, though we’re still doing breathing treatments at home. He has returned to all normal activities, including attending school, and he has been in the best of moods overall. I think being trapped in a hospital bed when he was starting to feel better made him restless and angry. When he gets floor time now, he is smiles and giggles most of the time! He apparently is also a great sleeper and has amazingly not been disturbed at all by his sister’s night time meltdowns. His seizures have been kind’ve all over the place without a pattern where one day he’ll have none and the next he’ll have five pretty significant events. I hope it will settle soon.

Mom and dad are both sleep deprived, but it feels like we’ve turned a major corner. Kyle says that “Today? I am human again.” And I personally feel less like I was hit by a truck, and more like I just ran a marathon. I have gained a lot of my mobility back, and most of my pain is in my breasts from too much nursing and less in my surgery incision, which is starting to just feel sore. We have felt remarkably supported by family and friends who came to keep Cyrus company in the hospital, or afterwards to take care of me or help with the children in these first few days of recovery.

We know we’re on a rollercoaster as we settle into our new routines. But it’s a rollercoaster that we are excited to be on.