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!

Week 261: Sink or Float

This has been a momentous week in ways both expected and unexpected. 


Expected: Our hero turned five! 

Unexpected: At his five-year physical today, we learned he is in the 92nd percentile for BMI. 

Expected: Summer has continued to bring a variety of types of weather, most of which are beautiful.

Unexpected: One of these types has weather has resulted in me currently bailing out the basement, one five gallon bucket at a time. 

Expected: One day, words written by Papa Bear would appear on this blog. 

Unexpected: That occasion would arise while he was taking dictation for me while I was bailing (see aforementioned bailing). 

Expected: some blog posts will be longer than other blog posts. 













Unexpected: The blog post marking a half decade of the existence of this blog would be among the shortest. Thank you all for your love and support over the last five years. A more thoughtful post on this momentous occasion will follow in drier times.

Week 260: Goodbye, Miss Katie

This year, for the first time, the kids expressed interest in having a joint birthday party. Being the top-notch organizers that we are, and having very little else going on in our household at the present moment, Papa Bear and I looked at the calendar about 10 days ago and realized that there was exactly one weekend left in the summer that we could have the party. Fortunately, doing things on short notice does substantially limit the amount of time one can spend sweating the details. We sent around a quick Evite to some local friends, put together a cake, found a bottle of juice in the basement that may or may not have been left over from some previous occasion, bought a dozen bagels, and voila. One party. The kids loved it, and Lemon was only slightly confused about the party not being on his actual birthday.

The theme of the party ("three, five, we survived") was derived from something another mom with closely spaced children told me. I was buying some baby item or another from her when Lime was an infant. When she asked about the particulars of our children, I told her their sexes and ages, she said, wisely, "Ah." After a moment, she followed up with, "Well, if you make it to three and five, you'll know you've survived." And, my friends, getting ahead of myself by only 6 short days, here we are. On the cusp of having survived. I can hardly believe it.





In another sign that summer is drawing to a close, today was Lemon's very last day of food school. After a year and a quarter, I feel like he is leaving it in a good place. I certainly had my doubts about it along the way, and almost threw in the towel several times, but I'm glad I didn't. He learned a tremendous amount from his teacher, Miss Katie. She was able to teach him so many things, and give him the confidence to approach foods without fear or anxiety. Eating enough by mouth to become totally independent of the tube is still a huge challenge--and honestly one that I don't really focus on at all any more, especially knowing that there are plenty of adults with CF who also use a tube. But, if Lemon ever decides that he wants to take on that challenge for himself, he has the tools to try. More importantly, he has the tools to go to school and actually know what to do if he feels hungry. He has the tools to go to someone else's house for a visit or a party and partake in a social meal without worrying about it.

Lemon has not had a lot of definitive goodbyes in his young life, probably only one or two that he can even really remember or process. But boy did he understand this one. He managed to keep it together until we got to the car at which point he burst into tears and cried most of the way home. At one point, he stopped crying for a second to report, "Mama, I'm so sad there are boogers coming out of my nose!" This from the child who used to beg me to stop food school altogether because Miss Katie would push him to try new things and eat more bites. I guess she won him over in the end, and we owe her a big debt of gratitude for her hard work and persistence. Goodbye, Miss Katie, we will miss you!

Week 259: Itsy bitsy

Little Lime had his 3-year-old check up this week. Result: still tiny. He is in the 12th percentile for weight, and the 7th for height. At first they thought his height had fallen off the curve, but it actually turns out he is less than cooperative at having his height measured standing up, so we measured him again lying down and stretching him out as much as possible, and that was enough to get us out of trouble. Other than that, the doctor said he looked great, and made the shocking assessment (based on observation of behavior and a quick bruise/scrape count) that he seems "very active." Yeah, you're telling me. You should see my house.










Today we had Lemon's second-to-last session of food school. I can't quite believe that the end is in sight on this journey, but the planets have definitely aligned. Over the weekend he tried/ate such a wide variety of foods that I was kind of in shock: tortellini with pesto, pastrami, artichoke with garlic butter. We also decided to try giving up the morning bolus feed and do ~150 calories by mouth. I think we're actually doing pretty well in that respect. Lemon will reliably drink 6-8oz whole milk with his enzymes in the morning. I've resorted to some of our old pre-g-tube tricks to give that a little boost, adding some heavy cream or Ovaltine powder. He also likes to have a snack in the car on the ride to summer camp every morning, which is why the inside of my car resembles an up-ended bird feeder. But, hey, if he gets in another 100 calories in trail mix along the way, I can deal with vacuuming up a few raisins.

I can't quite believe how fast fall is coming up. Next week is the last week of camp, and then we head into a couple of weeks of family visits and other fun stuff before school starts. In preparation for all this, I printed out the school supply list for Lemon's school and started buying some of the stuff. And, I 100% support education and I am fortunate enough not to have to worry about the cost of the supplies, and I get that it's for the whole year, but I have to say I am shocked by the quantities. Five boxes of markers? 36 glue sticks? Times 20 kids? What are they going to do with 1000 markers? Glue them together I guess? I realize my particular child may not be representative, but I would be surprised if he's had the attention span to use up one marker and one glue stick in his entire life. I suppose the hope is that kindergarten will change this? In any event, some of the items on the list were categorized as "wish" items, not required ones, and I decided that I will make it my personal mission to make sure the classroom never runs out of the school supplies that I care most about: Clorox wipes, tissues, and hand sanitizer. Given the consumption rates that I'm extrapolating from the other supplies, I'd better get back to Target to pick up several hundred units of each.