Update on Felix: 6 Months After Gene Therapy

Felix 14 months

(This post is coming almost a month late. Next week it will be seven months! But better late than never.)

It’s been another big month for Felix, full of exciting milestones!

Medical Milestone: No More IV Meds

This month Felix was able to switch to oral versions of all his medications. No more IV meds!

Our doctor decided to leave the central line in for another month to make sure he handled the oral meds all right. We will probably wait until his next blood draw (you can take blood from it as well as administer drugs through it — it has saved him dozens of pokes over the last year) and then have it removed (which is a surgical procedure).

For the first time in fourteen months, Felix is not attached to a machine. It’s amazing. My boy is cordless/wireless!! When I pick him up, he’s the only thing I pick up!

Life is slowly becoming more normal.

eating - Felix 14 months

Lab Results

Felix’s lab results continue to look great. He’s actually in the lower end of the normal range of T-cells and B-cells! (Being able to grow these immune cells are the main goal of gene therapy). However, they’re still immature cells, and the doctors will continue to run cell function tests to see how well they’re working. Can they actually fight viruses/bacteria/fungi? That’s the main thing we’ll be looking at over the upcoming months.

We can see an end to isolation in the not-so-distant future. It’s so exciting.

Baby Milestones

Felix 14 months

Felix is fourteen months (i.e. one year and two months) old now.

This has been a big month for gross motor development. In the last month alone, he has learned to:

  • pull up to a high kneel
  • pull up to a stand
  • sit unassisted for long periods of time
  • stand for long periods of time while holding onto something for balance (even one-handed)
  • start to “cruise” on furniture and take his first few assisted steps.

We’re so thrilled.

He still hasn’t made much progress in fine motor and speech, but I’m hopeful that we’ll start seeing progress in these things now that he has good upper body strength. Now that he’s upright and not on his back or belly all the time, he actually has the chance to manipulate things with his hands more. I’m hoping that now that he’s mastered a few of these big-body movements, he can start to focus his energies on other things as well.

He’s still way way behind his peers, of course, which can get discouraging; but I’m so grateful he’s moving forward.

(This is how Felix felt about his first time in water. He warmed up to it.)

What I’m Into: January 2016

The seasons, according to my preference

Winter is objectively the worst season by a billion percent.

I’ve always hated winter, but this year is especially tedious because we have a child in isolation. We can’t go anywhere. We can’t go to the library or the petting zoo or a friend’s house. We can’t go to grandma’s. We can’t run to the store. We’re just inside. At home. All. The. Time.

Technically we could go outside, but Lydia is always wearing those damn princess dresses without any leggings or tights or socks (“They’re not pwetty enough”) so getting ready to go out in the wind and slush takes an hour so I just don’t bother trying anymore. (By the time I’ve convinced her to bundle up Felix needs a bottle or a diaper change or I need to start on supper.)

I wish I was mature enough not to complain, especially given that last winter we spent in the hospital with Felix (I should be perpetually delighted that we’re all alive and well and under the same roof) . . . but I’m just so friggin tired all the time.

Felix’s habit of waking up every night for a two-hour party has expanded to twice the number two-hour parties, so now Ben and I each have to take a shift every night. So we’re both always tired. I don’t have the mental energy to be positive.

Spring should hopefully bring with it sunshine, warmth, and an end to isolation.

So I’m trucking along, repeating, Only two more months till spring . . . Only two more months till spring . . .

In the meantime, here’s what I’ve been into.

Firespiral Woven Baby Wrap

carrier

A dear friend whom I know only online sent me this amazing woven wrap from Firespiral. (I’d never used a woven wrap before.)

I just cannot get enough of it. It’s gorgeous. It’s comfier than any other baby carrier I’ve ever used. Felix loves it — it’s like holding him in a constant hug (while leaving my arms free.) And thanks to my experience with the Moby Wrap, I had no trouble learning how to use it.

I’m in love.

Books

Your Money or Your Life: 9 Steps to Transforming Your Relationship with Money and Achieving Financial Independence (Vicki Robin). This doesn’t sound like a very exciting book, but it’s one of the first books on money to get Ben and me excited about finances.

This is not a budgeting book, telling you how to allocate your money and stick to your guns. (In others words, this is no Dave Ramsey, who just never worked for us.) It’s about developing consciousness around where exactly your money is coming and going, so that you can align your money flow with your values. It teaches you to see your work and money as “life energy,” so you can reorder material priorities.

Unfortunately my enthusiasm for this book fizzled out when Ben and I realized we just don’t have the mental energy to implement these fantastic practices right now. We just need to not kill each other until spring.

But eventually we’re coming back to this.

Kids’ Books: Princess Edition

princess books

I decided that if Lydia was going to be obsessed with princesses, FINE. I’m not going to fight it. But I will try to introduce her to some decent princesses in some decent stories. (She recently informed my sister that all princesses do is stand in windows and get ready for the ball. Oh no she didn’t.) (P.S. I got a lot of ideas from this awesome post).

Princess in Training (Tammi Sauer) – This one kinda feels like it was written by an angsty teenager. Princess Viola doesn’t fit in because she likes to karate chop, dive, and skateboard. (She probably also listens to emo music about how “Nobody understaaaaands me.”) So she takes princess lessons, where she struggles to do things “right.” In the end, her predilections help her to save the day when a dragon crashes the party. (How, exactly, skateboarding and diving into a fountain help defeat the dragon is beyond me.) I’m just glad the story has a plot (a rare quality in princesses stories), even if it does feel like the author is trying too hard. The illustrations are fabulous. And Lydia has already memorized it.

Paperbag Princess (Robert Munsch). I loved this Munsch classic as a kid. Clever Elizabeth realizes she can outwit the dragon and doesn’t need dumb Prince Ronald after all.

Princess Hyacinth (Florence Parry Heide) is about a princess who floats and who isn’t allowed out of the palace (for her safety, so she doesn’t float away). She and a local boy figure out how she can live an enjoyable life despite her unusual problem. I find the illustrations weird but the story is lively and surprising.

Princess Pigsty (Cornelia Funke). I like this one more than Lydia does. Princess Isabella is tired of being a princess (it’s boring) and she would rather take care of the pigs, to the king’s dismay. It ends up being a tale of a girl’s assertiveness and a father’s enduring love. Isabella and her father both come out winners, which is pretty sweet.

Children’s Bible

Jesus Storybook Bible - review

I wrote about my struggle with children’s Bibles two years ago, and got quite the response. Turns out I’m not alone. But this year we found our Bible:

The Jesus Storybook Bible (Sally Lloyd-Jones). Finally. The Bible I’ve been looking for. It’s not perfect (the author takes a few liberties, and it’s missing some important stories), but I like how it brings the stories to life. The author really sets the scenes with purple skies and sweet-smelling breezes and laughing birds. The characters are delightfully three-dimensional, and the artwork is lovely and whimsical and kid-friendly without being juvenile or garish. It doesn’t look the other way from death but it doesn’t dwell on it, either.

And Lydia loves it. She’s excited to read from the Bible every night to find out what’s going to happen next. That there is the biggest win.

I’d heard many rave reviews of this book in the past, but I never thought Lydia was old enough for it. Now that she’s four, it’s perfect for her.

Movies

The Abominable Bride. Remember how absolutely gaga I am for Sherlock? I about lost my mind when I discovered that the special episode (which takes place in Victorian England) was playing at our local theater. Grandma babysat and we made it a date. (With two of my sisters in the backseat of the minivan.)

It was everything you could possibly want it to be. I watch the show 80% for the relationship between Sherlock and John, 10% for the hilarious banter, and 10% for the actual mystery-solving. The costumes, sets, and music were perfect. It was creepy, thrilling, and full of surprises. Does anyone else just adore Mrs. Hudson? Oh, and Moriarty? Gah, I just loved everything about it.

Inside Out. We finally saw this on DVD. It’s brilliant, moving, and delightful, as we’ve come to expect from Disney-Pixar. But difficult for the four-and-under crowd to understand. Lydia was totally confused and couldn’t grasp the conceit at all (The characters are personified emotions living in a little girls’ mind), though she did enjoy watching the characters’ silly antics. I definitely cried more than once.

That’s it for now!

Linking up with Leigh Kramer.

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That Time My Daughter Ruined My Lipstick and I Didn’t Punish Her

lipstick2(Image Source)

(Note: I wrote this a couple of months ago — just scribbled it down — and thought I might as well post it. I don’t know where this blog is going but I want to explore that with you yet soon. I’m so tired, you guys. I haven’t slept in four years. Anyways, on to the story…)

I knew something was off as soon as she walked out of the bathroom, all nervous and quiet. I was chopping vegetables at the kitchen counter for supper.

“What’s up, honey?” I asked. She hung back. I put down my knife and started to walk towards her when I noticed some red streaks on her cheek.

I knew immediately what had happened.

She’d been pestering me to put lipstick on her all afternoon. Each time I’d said, “No, not today, honey. That’s only for when we go somewhere fancy.” (Really, as a four-year-old there’s probably never a right time to wear lipstick; but I hadn’t been able to resist dabbing a bit of red on her lips the night we’d gone to a banquet a few months earlier. She’d been so eager to join in when she saw me putting it on.)

I decided right then that I wouldn’t get upset.*

I knelt down to take a closer look.

“Hmm . . . did you do something with my lipstick?” I asked.

“No!” she said in a panic.

“Hmm . . .” I said again (which is how I buy time when I don’t know what to say). “I think I’m going to check.”

“No!” she said again. She ran toward the bathroom. “No, don’t check!”

She ran in front of me and barricaded the doorway with her arms. “Don’t go in there!”

“Honey, I’m going to check. I’m going to go in there.” I held her arm as I stepped past her.

“No!” she yelled again from behind me.

Everything looked tidy and normal in the bathroom. I was glad of that. I opened my makeup drawer. My lipstick was there, but there was a bit of red smeared on the outside of the tube.

“Hmm . . .” I said as I opened it and twisted. Out twisted a mangled red stump. I looked inside the lid, which was caked in red gunk.

“Oh, no, look at my lipstick,” I said softly.

And she threw her head back and let out a long, loud cry.

I stood there a moment, thinking while she wept.

“Oh, honey,” I finally said, turning around. She cried louder and louder.

I tried to think what to say. I was disappointed that my all-natural, handmade lipstick from the Farmer’s Market in a different city — the only lipstick I’d owned since a teenager — had been destroyed. I’d only worn it twice. But I wasn’t really as upset about it as she was.

I knelt down. “How do you think Mommy feels about her lipstick being ruined?” I asked.

She howled.

“She feels bad,” I told her.

More cries.

I pulled her in towards me for a hug and she didn’t resist. She just cried into my shoulder. Then I had an idea.

“You know what we can do? Some people put lipstick on with a brush. I can buy a lipstick brush and we can still use it.” I was satisfied with that.

She continued to cry but it softened after that. I gave her another squeeze and then returned to the kitchen, because honestly, I had to get back to supper. I didn’t have time to comfort her for ruining my lipstick. I don’t remember what happened after that but she must have gotten over it.

She hasn’t asked for lipstick since.

I thought it was a very interesting event as I reflected on it later.

Why did she try to hide it? Because she knew she was guilty without anyone telling her.

Why did she cry? Because she knew she had done something wrong.

The fact that she’d come to these conclusions and had an emotional response to them intrigued me.

She knew she wouldn’t get punished — she’d never been punished for anything before , she had no basis for ever getting that idea — so it wasn’t that. (We don’t do punishments or rewards.)

My guess is that she was unhappy knowing that I was going to be unhappy. And that strikes me as a good thing.

Will she do something like that again? I don’t know. I can’t tell the future. But even if I’d punished her, I still can’t say whether or not she’d still do it again. Preschoolers and toddlers are notoriously forgetful. But if she did repeat the crime after having been punished, she might go to greater lengths to hide it from me in the future. And I want her to feel safe coming to me and being honest no matter what she’s done, and not have to worry that I will exact further punishments on her.

What good would punishment have done? What could it have added to the experience? From my understanding, all it would do would be to put a rift in our relationship.

What Did She Learn?

Of course I can’t say for sure what she took away from the experience. But here are the messages I hope she got:

  • Being careless with other people’s things and breaking them makes them unhappy, which makes me feel bad. However:
  • Material things are just things.
  • I make mistakes but that doesn’t make my mom love me any less.

* I am rarely able to pull this off. I’m usually so sleep-deprived I yell at the first provocation. I have shouted “YOU ARE DRIVING ME CRAZY!!” more times than I’d like to admit.