Felix These Days (And a Blogging Break)


We had a bit of a scare recently: Felix caught a cold.

We know it came from Lydia. We had her over for a night and she woke up with a stuffy nose. Alarm bells went off. But we couldn’t bring ourselves to bring her away. The grandparents were all busy and the aunts and uncles have had to raise her enough already these last ten months. (Plus the last time Ben visited her at my parents house, she cried, “Why don’t you want me at your house?” How can a parent’s heart not break?)

We decided to keep her here and just keep her and Felix separated. It was a very stressful couple of days, and in the end we regretted it because Felix ended up with a stuffy nose anyway.

Immediately after that first sneeze that spewed out thick, opaque discharge, I freaked out and called our doctor at her home. She told us to keep taking his temperature, but if nothing else developed, we’d wait until his scheduled appointment the next day.

He’s been fine. She’s not too worried since he seems well. So far it hasn’t developed into anything worse. We don’t think his t-cells have dropped yet from the chemo, so we hope he has enough to fight this off.

I’ve talked to some other SCID parents, and it sounds like rhinovirus (what he has) is one of the less serious viruses. Usually, the only symptom is a runny/stuffy nose.  As long as he doesn’t get, say, an ear infection, it’s more a nuisance than anything. The only thing is, with immune-deficient children, it can last months and months. Some have had it for over a year.


So we’ll keep suctioning out his nose and hopefully he’ll fight it off in time.

Otherwise, Felix has been doing pretty great lately.


Since my last post expressing worries about his development, he has suddenly made a bunch of progress. He’s scooting around on his tummy like a pro, and is even starting to push up onto his hands and knees. We were shocked when we first saw it. He’s never done anything like that before! How thrilling!

He’s starting to sit up on his own for slightly longer stretches (5-10 seconds), and is starting to babble m and n sounds (my favourite is um-num-num-num, and when he starts to whine enya, you know he’s seriously unhappy.)

It’s encouraging. I’m feeling a bit better about his development.

I still panic anytime I think about his CMV in the next few months as his t-cells drop, but I’m doing my best to stay in the present.

Blogging Break

I’ve also reached that point again where I think I need to take a few weeks off of blogging. (It happens every so often.)

Even when I only post about once a week, this blog takes up a surprising amount of mental space, which I feel I need to devote to other things right now. I need to give myself permission to take a break.

I’m not entirely sure when I’ll be back but I’m sure it won’t be long. And I will absolutely let you know if anything big develops with Felix, good or bad.

For now, we’re just continuing life in isolation at home. It’s dreadfully boring but we’re all fine. It’s a trillion times better than life in the hospital, and Lydia’s visits are the highlight — she exudes energy and joy. Lord, I love that girl.

Thanks always for your love and support.

Felix is 10 months (Two months past gene therapy)

Felix 10 months

I thought I’d provide an update on Felix, now that he’s two months past gene therapy.

Felix is just about ten months old. He is a huge snuggler, which I love. He’s very social and doesn’t like to be alone. He’s got three goofy teeth, he loves drinking water from a glass, and he could jump in his Exersaucer all day if we’d let him. (He got addicted to it in the hospital. We’re trying to wean him off of it.) He’s been very well since he was discharged from UCLA two months ago.

Felix still doesn’t sit up on his own yet which worries me. He’s not even close to crawling, though he can roll, pivot and turn. He’s quite behind, developmentally, in  general — I’d guess he’s at about the six- or seven-month level. He doesn’t babble any consonants — he just squeals, laughs, growls, and yells. He’s just starting to put food into his mouth.

He doesn’t have an occupational therapist because we’re trying to minimize his contact with people. Our number one priority during the first six months post-gene-therapy is building up his immune system and keeping him safe.

I try to remind myself that Felix has good reason to be behind — he didn’t get much chance to develop during those six months in the hospital. He was constantly hooked up to machines, healing from surgeries and lying in bed, battling CMV. Stimulation was limited in that little white hospital room, and he couldn’t see anyone’s faces. He never saw anyone eat or talk or smile, and he rarely got to play on the floor. His toys were limited to hard plastic. His infancy was nothing like a normal baby’s — he didn’t get to go places or meet new people. He didn’t get to feel wind or smell food or pet doggies. So of course he’s behind.

But I still worry that maybe there’s something neurologically wrong. Autism runs in Ben’s family. While in the hospital the second time he started to exhibit a lot of repetitive behaviour which freaked me out — constantly rocking back and forth and rubbing his head against the bed. (That has mostly subsided since returning home. Maybe he was just losing his mind from boredom.)

I’m comforted by the fact that he is at least making progress, even if it’s slow. His body is strong and his eyes look bright. And it’s still such a blessing to watch him eat, to want and enjoy food — both bottle and solids. I had really worried if he would ever eat normally again, after all those months with the NG tube.

We still take him to the hospital two hours away ever other week for clinic visits. At these visits he mostly gets blood work done which is no biggie with the central line. We got trained to do his dressing changes (i.e. to chance the bandages on his central line, the permanent IV line in his chest), so at least we can do that in the comfort of our home whenever he’s ready. (They used to be a nightmare in the hospital.)

central line dressing change

So far, all the data we’ve gotten from blood work has been really positive. His liver enzymes had been high without a clear reason since he was first diagnosed and have been a cause for concern; but they have slowly been coming further and further down. At his last visit they were in the completely normal range. How exciting! What a relief!! His CMV counts have been “below the level of detection” since just before gene therapy and so far have stayed that way — another huge and awesome relief.

We are still waiting for his T-cells to drop as a latent response to the chemo — that should happen in a month or two. At that point we can expect his CMV to go up again, since his main defense against the virus will be down, but hopefully not to dangerous levels. He has managed to overcome it before. If he can get through that stretch, we will be able to breathe much easier.


I’ve said before that Christmas will be sort of a benchmark for us — at that point we’ll know, more or less, whether gene therapy was successful. Some people have been under the impression that he’ll be able to live a normal life at that point. I want to clarify that if we get the go-ahead to start moving out of isolation, that only means maybe, say, his (grown-up) aunts and uncles can come visit him and hold him for the first time. Maybe we can take him to Grandma’s house. It does not mean we’ll be taking him along to the grocery store or hosting play groups. Church and birthday parties are still a long way off — maybe by next summer.


For now, he mostly stays in his isolation room on the main floor, though we take him into the kitchen for meals, and sometimes let him just sit in his high chair and watch us work. (The fact that he’s not mobile helps here.)


We’ve been having her over more and more — usually for the whole weekend. We’re even starting to keep pajamas and underwear here. It’s heavenly.

She usually stays “behind the line” (the line of tape sectioning off Felix’s isolation room), but occasionally she can sanitize her hands and come interact with her brother. She adores him and would be all over him if she could be. Interestingly, she’s totally open to the idea of having more babies in the future.

Mostly, though, she sits in the computer room and colours pictures of Elsa and asks philosophical questions about Disney’s Frozen (a movie she has seen TWICE): “Why did Elsa not want Anna to be frozen? Why did she touch her face? Why did Prince Hans want to kill Elsa?” (If you thought there was a finite number of questions one could ask about Frozen then you were mistaken.)

That about sums up our life lately.

It’s magical and terrifying and tedious and delightful all at once.

The Life-Changing Magic of KonMari Folding: Why (And How) You Should Fold Everything Vertically

How and Why to Fold Your Clothes Vertically. This will transform your wardrobe! From The Life-Changing Magic of Tidying UpIn my last post I discussed some of my favourite ideas from Marie Kondo’s The Life-Changing Magic of Tidying Up.

I love Kondo’s method of vertical folding so much that I wanted to devote an entire post to the subject.

What Is Vertical Folding?

I had to head for the Interwebs to get help understanding Kondo’s suggestion to fold things so that they “stand on end.” What did she mean by that? I needed a visual.

After watching this video, followed by this one, I finally understood.

This is how I would sum it up: first, you fold an item into a long, thin, vertical rectangle (usually by folding it in thirds vertically). Then you fold that rectangle in halves or thirds horizontally, from the bottom up, until you end up with a tidy little package. Then you can stand it up on end in the shape of an upside-down v.

Here’s what that looks like, roughly, for a shirt:

How to fold a shirt vertically (i.e. the konmari way)If it helps, watch this video.

In the first row you can see me folding he shirt into a long, vertical rectangle; in the second row you can see me folding it horizontally into a neat little packet. Then voila! It can stand upright on its own!

Each item will be slightly different in terms of how many times it must be folding to achieve that shape. The garment’s size and the fabric’s bulk will affect the outcome. You need to experiment a few times. Kondo says it will “click” when you get it right, and I have totally experienced that.

Anyway, when your clothes are folded this way, they can be tucked into rows, side-by-side, in a drawer. It looks like this:

konmari folding - shirt drawer

(If your drawer isn’t totally full it helps to use a shoe box  to help things stand upright. I’ve used one to separate my tank tops.)

I’ll show you how to fold other items this way in a bit — first I might need to convince you just how awesome this method of folding is.

What’s So Great About Vertical Folding?

You guys. Once you start folding your things so that they stand on end you won’t want to stop.

Here’s a list of reasons I love KonMari folding:

1. It makes a ton more space.

After folding my clothes vertically and utilizing a couple of shoe boxes to divide my things like Kondo suggests, I could fit twice as many clothes into a drawer. In turn, I was able to take things off of shelves and off the closet floor and organize them into the newly-emptied drawers in a much more efficient, attractive manner.

I already showed you this in my last post, but apparently I can’t get enough of showing the world my underwear drawer:

The Konmari method: underwear drawer before

Konmari method: underwear drawer afterSee? Look at all that room! I could now fit the contents of the lower drawer into this one:

Konmari method - after

With that lower drawer empty, I now had a nice place for swimwear, which was previously always just kind of stuffed wherever it could fit.

Soon, everything has a place and there was no more stuff piled on my closet floor.

Yay for more space!

2. I can see everything at a glance.

That makes it much easier to find and select what I want. No digging around and messing things up when I can’t find that one shirt.

It also helps you keep track of your possessions. When you fold things like this, none of your clothes end up hiding under your other items for months on end until you forget about them. You get a much better sense of what you really have.

3. It makes every item I own feel more valuable.

When I slow down to smooth each item with my hands and carefully fold it just so, I am encouraged to treasure each item. It makes every item feel like a precious gift.

folding pants

And when all my clothes are arranged in neat little rows, they seem more valuable. (In my closet, I achieved the same thing by hanging everything on velvet hangers. All my clothes feel couture now!)

4. By contrast, folding this way highlights the things I no longer cherish.

It’s easy to ignore and forget about items that I just ball up and toss into a drawer until my drawers are bursting with things I don’t really like. KonMari folding encourages me to take more careful stock of what I own. It might force me to question why I even own certain things. If I feel irritated by having to take such care with an item that repulses me, that might be a sign that the item needs to go.

I recently chucked some old, ugly t-shirts I was wearing to bed for that reason. It felt weird to carefully fold clothes I hated. I replaced them with some pretty, matching, cotton pajamas which are a pleasure to fold.

folding pajamas konmari

5. It forces me to straighten up my environment so I have a surface to work on.

You need a decent-sized workspace for this this kind of folding. I usually fold the clothes in my bedroom. Before I begin, I need to make my bed (if I haven’t already). I have been trying to get in the habit of making my bed as soon as I wake up in the morning; this is an added incentive to get the job done.

6. It’s very satisfying, making your clothes all crisp and tidy.

I cant’ be the only one to feel this way.

7. Your clothes get less wrinkly.

Nothing gets bunched up or flattened under the weight of everything above.

Convinced yet? Here are some more visuals:

How To Fold All Your Clothes the KonMari Way


Fold in half, then fold in the pointy crotch part to make a rectangle. Then fold in halves and thirds until you have that neat little package.

Howto fold pants the KonMari wayAgain, here’s a video if you need some extra help.

Here they are in a drawer (Ben and I can now fit both of our pants into the same drawer. P.S. He is not as good at folding this way but he’s got the right idea):

pants drawer - konmari styleUnderwear:

OK, so I hesitated to show you how I fold my underwear because I do have a little bit of dignity. But then I remembered I had a few pairs I hadn’t worn yet! These still have the tag on them. Okay? These are not underwear I have worn.

Anyway, same principle as the shirt:

how to fold underwear the Konmari way

And here’s how they look in the drawer. (I’ve used a shoe box again as a divider. The bigger box contains my socks.)

underwear drawer - konmari style(Ignore my rumpled sports bra. I’m not perfect.)

There you go! Give it a try, I promise it’s awesome!

How and Why to Fold Your Clothes Vertically (aka Kon-Mari Style). This will ransform your drawers! From The Life-Changing Magic of Tidying Up