Example — how to help Noah with his immune deficiency

Luke,

So Noah has been battling this cold for the last two weeks. He got a fever on Sunday March 18th, was very sick for a few days after that (so he spent most of spring break in bed), and he’s been sick ever since.

(None of this is particularly abnormal — this cold virus can take awhile to recover.)

However, the one thing I’m trying to teach Noah,

is that he has to balance his life in a way that accounts for his immune deficiency to try and maximize his health.

If he makes adjustments, it will help sustain him longer in life close to a normal functioning level for more years, then me, my father, my uncle, had etc.

(When I look back in my own life before I turned 30 (after 30 it was all downhill) but before 30, as long as I wasn’t working full time I was somewhat okay, because I was sleeping in, taking naps when I could, etc.)

Noah has a big paper due for English tomorrow (different from his other big English project due next week), but he’s still sick.

He’s been working all week, not gaming, etc,

but because he’s still sick I’ve been making sure he’s in bed at a certain time.

So tonight 10pm rolls around — and he’s still coughing, still blowing his nose, and after working all night on his Geometry and other English assessment,

I sat Noah down and we discussed a plan—

Basically what we decided, was that if he stayed up late to finish this English assignment, then turned around and had to go to school early, that it was too risky — his cold is still lingering (and might have even gotten worse a little over the last two days), and pushing it too hard tonight could set him back even more.

So we decided it would be best if he goes to bed at 10pm —still wake up for school at 7am—but instead of going to school, finish his English paper in the morning,

then hopefully Noah make it to school on time before the day is over so he can still turn in the paper, as well as go and see the Geometry teacher and take the quiz he’s going to miss by not going to school for 1st period.

This is a great example of what Dr. Crosby’s note to the school is for—I don’t believe Noah so sick he can’t go to school at all, but if Noah stays up late and doesn’t get enough sleep it’s too risky for him.

As much as the world may not believe him at times— because he looks so healthy—Noah needs to be smart and make adjustments. Then if makes smart adjustments, he will be okay much longer than I was.

This is the way to parent Noah — you have to be smart about it. Trust me, we’ve already pushed the limits with Noah many times and we’ve learned the hard way.

(Remember his back to back to back sinus infections back in pre-school, always turned into bronchitis unless it was treated? None of that has gone away, it’s just more under control because he’s in daily antibiotics. Take the daily antibiotics away, 100% he’ll be sick with a few weeks.

The reason I know?

Because we’re not the most complaint patients in the city of Los Angeles and whenever we’ve had relapses in picking up Noah’s medicines (or Noah not taking them and lying to me, then confessing when he’s sick that he didn’t actually take them—when I firmly stare. ‘I need to know if this is a TRUE breakthrough infection or you just STOPPED taking your antibiotics because it EFFECTS THE POTENTIAL COURSE OF TREATMENT’, then he’ll confess if he hadn’t actually been taking them…

Anyhow,

there’s been enough of these lapses in treatment then Noah getting sick, to know Noah still is extremely prone to infections.

I’ve started to pay more attention to the day to day symptoms, because Dr. Butte asked a very smart question a few weeks ago—he asked how long it took Noah to get over the flu he had on Dec 23, and when Dr. Butte asked that questionedX Noah and I just looked at each other — we honestly didn’t know —

( When you’re feeling like crap and sick to some degree every day, you don’t always pay attention to little details, one infection tends to roll right over to the next one.)

But when Noah and I got home after the appointment, we thought about it, and I remembered he was still really sick Jan 5-7, which was two weeks later, because I remember thinking Noah was supposed to be going on a trip with some students, and that I was glad the trip got canceled because Noah couldn’t have gone on it anyway.

So—I’m trying to keep better track of these things, which also means it’s making me more aware that Noah needs to build into his life his limitations, in order to minimize them—with the goal of keeping him as strong as possible, for as long as possible—

(Noah’s trip over the weekend for Acadeca he was in rough shape, but the team was sympathetic and supportive, but I also think it’s part of the reason why now Noah’s still sick—)

You have to manage Noah’s health carefully, and you have to help Noah manage his time carefully as well.

Hopefully tomorrow he will make it to school before the final bell with his paper in his hand, if not he can just turn it in next week. It’s better for Noah to rest then pull an all nighter right now…too risky.

Tara

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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