Monday, August 27, 2018

Week 262: Afloat

Well, that was a week, for sure. When I last touched base with you all, I was bailing out our basement amidst a record-breaking storm. Madison got a total of 10 inches of rain, falling at a rate of 2-4 inches per hour. Suffice to say, the city was completely overwhelmed by the amount of water. I actually feel lucky that we got off as lightly as we did. I bailed continuously until about 12:30am when the rains let up, and then we had a few days of using the shop vac, the dehumidifier, and our handy carpet-drying fan. Some of our neighbors were much worse off, with inches or feet of standing water in their basements, and sewage back-ups that necessitated stripping their basements down to the studs and starting over. So, all in all, I can't complain, although I do think we will look into installing a sump pump before next summer.

Reflecting back to the post I was planning to write last week, I cannot believe that Lemon (and this blog) have crossed the half-decade mark. This is a tremendous milestone for him, in that 50 years ago, kids with CF usually did not survive to see the age of 5, and I am beyond grateful that we live now and not then. I'm also tremendously thankful to everyone who was involved in the research has taken place over the last 5 decades. It is thanks to those patients, clinicians, and scientists that we have on our hands a child who is in the 70th percentile for height, and an astonishing 92nd percentile for weight. A child who has not been admitted to the hospital in almost 3 years. A child who is slightly aware that he is a little different than most people, but not so very different.

I also wanted to thank all of you, loyal readers. It brings us great joy and comfort to know that in good times and bad, there are about 200 of you out there every week cheering us on.

And, on to this week. This is our last week before the grand adventure of kindergarten begins. Lemon and I went to a little orientation at his school, so he could see his classroom and meet his teacher. I think he's excited about it, although it's a little hard to tell. The one thing that I'm a still concerned about is that we don't yet have a firm plan in place to deal with his enzymes. The nurse who used to cover his school retired at the end of the past school year, and although I am led to believe that a replacement has been hired, Lemon's teacher has not been able to get in touch with her. She said she would reach out again, but we have literally 8 days until that first in-school snack, so we do need to get a bit of a move-on. I'm fine with waiting til October to get the formal 504 plan in place, but we need a plan to deal with that first snack by no later than snack time on the first day!

Meanwhile, we are on a quick family get-away with some special guest stars, Grandma Carol and Grandpa Dudley. We are in the town of Lake Geneva, which is a little summer spot southeast of Madison. The day of our departure was 7 hours of "Why aren't we leaving yet? Can we leave now?" followed by 90 minutes of "Driving is so boring. Are we there yet? Where is Lake Geneva?" But, now we're all here and having so much fun that we have to get up at 5 a.m. to maximize the amount of enjoyment that can be gotten out of any one day. Ah, vacation.

The only little dark cloud in the sky is that Lemon very definitely has a cough. I had been sort of hoping for the past couple of days that it was nothing, or maybe a few allergies since his nose has been a bit stuffy the past couple of days. However, it has become pretty clear that he is definitely not at baseline right now. We have 8 days to get back there before kindergarten starts, so I am thinking that even though we are on vacation we are going to have to ramp up to therapy 3 times a day to try and shake it out of him. It's such a shame to take time away from the pool and grandparents and everything else, but health always has to come first, and we really need to be at baseline before kindergarten begins. I talked with his teacher and we came up with some strategies to deal with the times when he needs to do a treatment 3 times a day during the school year, but I really don't want to be testing out those strategies during the first week!