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.
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.