Week 250: Poop doula

I must say, in a household with someone with CF, it is a rare week when everyone EXCEPT THE CF'er has some sort of respiratory issue. Lime had it first, a cough that has taken the better part of two weeks to more or less clear up. On Tuesday, Papa Bear was not feeling well, although he thought it was because the air conditioning in his office failed and he got dehydrated. By Thursday, with a fever of 102.6, it was pretty clear that something more serious than dehydration was going on. He decided to head over to urgent care. As he was leaving, I semi-joked, "I hope it isn't summer pneumonia." Haha, it was summer pneumonia. Because whose husband gets summer pneumonia? Mine, it seems. Luckily, he got on antibiotics right away and started feeling better almost immediately. And then, I went out for a long run on Sunday, feeling OK at the start but definitely not OK at the end, and then developed a low-grade fever and a cough too. Luckily I seem to have only gotten whatever Lime had and skipped the summer pneumonia. Meanwhile, Lemon has just been skating along, having apparently built up immunity to whatever this is sometime earlier in his preschool career.

In other exciting news, I sold our changing table this week. After almost 5 years of constant use, it is ours no more. I wish the (very) pregnant person who bought it the best of success. Now, I have moved up in the world from diaper changer extraordinaire to what Papa Bear refers to as "poop doula." I do hope that as Lime gets older, my services will be called on less frequently, but it is absolutely a step in the right direction.

We had our clinic visit today. After two appointments that were basically nightmares of waiting in the exam room for people to see us, my complaints seem to have finally registered and this appointment was perfect. We actually got there earlier than I usually do for appointments, because I had remembered it as 1pm, but it was actually supposed to start at 1:15. However, no sooner had I checked in at the kiosk than the pulmonary function testing person called us in, so we got that out of the way first with no wait at all. Lemon did the test really well, an impressive feat for someone who is not yet 5. He also managed to break the scale in the PFT room by sort of leaping off it sideways while also simultaneously twisting before his feet were actually off the platform, such that the platform came off with him and crashed to the floor. But anyhow, that is life with my kid.

Speaking of scales, Lemon now weighs 44lb and is in the 83rd percentile for BMI for his age. This is up from 9th percentile when he had his G-tube placed. This appointment was actually pretty hilarious, because the care team spent the whole time sort of asking me what I did to accomplish this miracle, and looking to me to see if I thought any further changes were needed. I think we're good for now. Our main goal for the summer is just to keep packing the weight on so that Lemon is prepared for whatever new contagions he will encounter in kindergarten.

I also asked the clinic staff what they thought about the 504/IEP issue--do we need a formal plan for the school to deal with any CF-related needs? The advice I got from the clinic was no, he doesn't need one, especially for the early grades. Contrast that to the advice I've gotten from all the parents I've talked to with kids with CF or other special needs, who have all said emphatically yes, you must have one. I think I'm going to trust lived experience on this one.

I finally finished up my most recent set of articles for the CF Foundation website, so I should be able to point you all to those shortly. I've signed up to be part of our state's advocacy team--not sure what that entails yet, but I'm hoping that I will get a chance to meet with one of our national representatives later this year. I'll keep you posted on that as details emerge.

Also, how is the last day of the school year on Friday???