Week 258: Angry carrot

I met with Lemon's future kindergarten teacher earlier this week. We had a really nice hour-long conversation at a coffee shop, and in summary, I think Lemon is in really good hands. His teacher had some pretty serious health issues herself as a child, and has a lot of empathy for Lemon as a result. She was totally on board with my number one goal, which is to make Lemon's school experience as normal as possible. She was thrilled to hear that Lemon can swallow pills, and is going to advocate to be able to keep a supply in the classroom so that Lemon doesn't have to go to the nurse's office every time he's going to eat. She's already totally up on using water bottles instead of the shared water fountain, and is well versed in the ways of hand sanitizer. Although there are still some details to be worked out, and our planned 504 meeting in October, I definitely feel like we're laying the groundwork for success.

Speaking of pill swallowing, Lemon had been requesting to switch from his chewable vitamin (which tastes like orange foulness) to one he could swallow. Of course, the swallow-able version is not designed for a 5-year-old. It is so big, in fact, that he is only supposed to take it every other day, instead of every day, so that he doesn't OD on vitamin E. He approached it without the slightest hesitation, and down the hatch it went. He can now also swallow the Creon 36,000's, which is way more convenient than 3 Creon 12,000's. I am still kind of in shock.





All this, plus Lemon's new ability to throw back an entire glass of milk at once, has given me ideas. My idea is to get to the point where we eliminate the need to use his feeding tube at all in the mornings. This would mean doing 2 or 3 medications as pills, plus a breakfast drink/food every day. The amount of time and hassle it would save us would be really significant, since right now each morning involves one of the grown-ups (usually Papa Bear) loading up 6 different syringes full of stuff, prepping the extension, delivering everything, and washing all the syringes and extension again after. Feh. Washing syringes gets old REALLY fast. One issue might be the fact that there aren't a lot of pills made in doses small enough for a nearly 5-year-old, so I will have to check in with the clinic and see what they can suggest.

Other than that, summer continues to roll along. It's hard to believe there are only 3 weeks of summer camp left, then a couple weeks of family visits and other fun and excitement, and then the start of school. Lime has his 3-year-old check-up later this week so it will be interesting to see if he's managed to climb out of the 5th percentile yet. I have to say, he is starting to look pretty minuscule compared to his big brother, who seems to be getting bigger by the minute!

Week 257: Crane bird

Funnily enough, the most dramatic event of the week occurred late this afternoon, as we were heading home from the playground at our local elementary school. We walked right up to a sandhill crane. I told the kids that it was a crane, and they looked at me like I was insane, because, duh, a crane is a truck. I told them that there was also a kind of bird called a crane, and that was it. Lime pointed out that it was not a crane because it could not lift things. After some thought, Lemon conceded that it was a "crane bird," but the stand-alone title of "crane" appears to be reserved for truck or tower cranes, not feathered things.

At food school today, I told Lemon's food school teacher that we had opted not to enroll in either group or individual therapy for the coming session. Even though she'd written that he was recommended for either (or both) of these options on his form for the upcoming session, she said that she thought that was a totally appropriate choice for him, given that he's shown that he can apply what he's learned at food school to eating in other settings. That does beg the question of why "nothing" wasn't an option listed on his form (although I suppose they don't earn any more money for recommending "nothing"). So, that leaves us with just 4 sessions of food school remaining. I feel like we're leaving it in a good place, and they will put our status as "on hold," in case we decide that we need to come back for some refresher sessions later on.

Frighteningly enough, it appears that we have arrived at the time of summer during which preparation for the next school year gets underway. I just filled out a stack of papers for Lime's preschool, and tomorrow I'm meeting with Lemon's kindergarten teacher for next year (shhh, readers in our school district, I'm not supposed to let on that I know who he will have).The fact that I'm meeting her tomorrow reminded me that I should actually at least look at the packet that the CF center gave me about CF in schools. Of course the first hospital folder I found contained the discharge information from when Lemon was admitted to the hospital in October of 2016 (no, I am not behind on organizing/cleaning out papers), but eventually I did find the identical folder with the school stuff inside. I guess I would describe it as mildly helpful, but a little dated-sounding. In any case, I think I'll stick to talking tomorrow, and then if the teacher wants any written stuff I might write something myself...because of course.

Also this past week I was so lucky to get together with some dear friends that I hadn't seen in over 3 years (anyone remember our famous trip to Hawaii way back in Week 79?) who were in Illinois for a wedding, and another of my oldest and bestest buddies who was in Madison for a family reunion. In summary, everyone should come to the Midwest MUCH MORE FREQUENTLY. I miss you all so much! What a treat to see so many of you in this hectic month of July. Have I mentioned that summer in Wisconsin is lovely? And it's over in something like 10 days I think...

Week 256: Reentry

All good vacations must come to an end. This was hands down the best vacation our little family has ever taken. Now that we are safely back at home, I can report without risk that this is the first vacation that I can remember since the kids were born where I did not have to wash bodily substances out of any bedding that did not belong to me while we were away. We had an absolutely amazing time with all the old friends who joined us on our vacation, and the kids had a blast getting reacquainted with an array of honorary aunts, uncles, and cousins that they hadn't seen in far too long. The loved the beach, too. In summary, we are going back next year, and hopefully for a longer stay.

Also this week, Lime turned 3. I can't quite believe it, but I suppose it's true. His little personality continues to grow and delight. He lives life at full speed, plunging headlong from one challenge into the next, falling over himself constantly but always back on his feet and racing of in a different direction in a flash. He is a great reader and manipulator of people, always testing to see just how far his cute face can get him. He is the greatest companion I could have imagined for his older brother, they are inseparable (even when it would be best to occasionally be separate), and our family would be so incomplete without him. 

One truly amazing thing about the trip was just how much Lemon ate while we were away. I'm sure all the running around at the beach helped with his appetite, plus seeing his buddies eating everything in sight. But I mean, grilled cheese, pizza, weird non-Morningstar veggie burger, an entire ice cream cone, broccoli, ham...staggering. He even ate breakfast a few times which is unheard of. At food school today, he ate more food than his teacher asked him to, so she was amazed as well. Although she recommended him for a "picky eaters" group in the fall, she conceded that he has basically gotten everything he can get out of the 1:1 sessions, which goes well with my plan of having him "graduate" from food school at the end of the summer. I feel confident that he has the tools now to eat without fear, and he's fully capable of using them. Now, he can be free to switch his focus to the many other challenges of kindergarten. Oh yeah, and he swallowed 100% of his enzymes as pills on our trip. I can't even tell you how amazing it is to travel without apple sauce everywhere. Seriously amazing.

Half my mind is still in Massachusetts with all my dearest friends. Wisconsin is definitely the place the boys call home, and they were so excited to see our house again when we got back. I have come to like it here, and to even feel situated. When I'm not comparing it to anything, I can even think of it as home. But fresh from a trip east, it is so clear where "home" really is for me. We'll be back soon.

Week 255: The Cape

We are on vacation! Travel was exciting as always (TSA testing the "vapors" from our bottle off Kirkland-brand kid's Zantac was a particular highlight), although I will say that it was way easier than our last family airplane trip a year ago. We once again decided to leave the vest behind and do manual chest PT while away, which I think was the right decision, although Lemon is taking a little time to adjust to it. Our trip so far has been great fun, seeing lots of old friends and old familiar places. Since I am also on vacation, I will steer clear of rants about various topics, and instead just give you a flavor of our adventures so far in picture form, the first few from home right before we left, and the rest from our trip.

Week 254: Feel the heat

As is often the case when Papa Bear goes away for a few days, I find myself unable to recall much of anything that happened while he was away, mainly due to the rapid nature of events around our house. That combined with the sort of brain-melting heat wave that we've all experienced over the past few days and I basically have no idea where I've been. Here are a few things that have come back to me through the fog.

I had a really great conversation with the principal at Lemon's elementary school. She seems extremely on top of things, and has a lot of experience with 504 plans. She agreed with the consensus from other CF parents that it is totally appropriate and advisable for Lemon to have one. She also suggested that, since he doesn't have too many acute needs, that we wait until October or so to actually put one in place. That will give his new teacher some time to get to know him and for us to figure out what will help him the most. I'm going to meet with his future teacher later this month to give her a sort of initial download on CF basics and figure out a plan for dealing with enzymes. Beyond that, I guess we'll just tackle things as they arise, and then consolidate them into the 504 plan a bit later on.

Speaking of enzymes, Lemon is now doing 100% of his enzymes as pills. I can't believe it. We switched from the Creon 6000's that he was using when he was learning (slightly smaller than a TicTac) to the 12,000's (about 1.5 TicTacs) so that he would only have to swallow 2 or 3 pills at any given meal. He rolled with that change, no problem. He has now completed all the squares on his reward chart, and his new remote controlled car is on its way to Cape Cod, where we will rendezvous with it on Saturday if all goes according to plan (both from the car's perspective and ours).

I am also pleased to report that we finished our second course of azithromycin and Lemon's cough has not returned, so (fingers crossed) we may have kicked H. flu once and for all. I had a sort of "hilarious" MyChart exchange with the clinic, in which I preemptively asked for a next plan in case azithromycin failed. First of all, I learned that his nurse-practitioner is out through the end of next month. Nice of someone to let us know about that. So, I instead had an exchange with the pulmonologist who is head of our CF center and who last saw Lemon in person say 2 or 3 years ago. In any case, he seemed genuinely puzzled as to why I wanted to know what the plan was, and also was quite skeptical that H. flu was the cause of our problems. Luckily, the exchange was not in person so there was no chance of me yelling either "BECAUSE EVERY TIME WE DON'T HAVE A PLAN WE HAVE TO TALK TO THE DOCTOR ON CALL AND THINGS GO TOTALLY OFF THE RAILS BECAUSE THEY DON'T KNOW HOW TO TREAT CF" or "HIS FATHER AND I BOTH HAD PNEUMONIA LAST MONTH, IT'S NOT A COINCIDENCE!" Anyhow, he did manage to produce a plan for us, which hopefully we won't have to deploy, but sheesh.

In other news, we got Lemon's vitamin levels back from the his annual labs at long last. "Got back" is something of an overstatement, as I had to send a separate MyChart message to the dietitian, since the results failed to post automatically. In any event, the good news is that all the vitamins they measured were within the normal range, including Vitamin D, where he has always been either low or at the very bottom of normal. It's almost as if measuring Vitamin D in June instead of February leads one to different conclusions. How fascinating.



It's hard to believe, but in a day or two I will have to enter serious trip preparation mode. Our package of formula and whatnot has already arrived on the Cape, which is great. Now it's merely a question of getting all the other things and people packed up and out there as well. I talked to Lemon and he is totally on board with doing manual PT while we are away, which is great in that it saves us the hassle of dealing with the vest. So, that's one less thing to deal with, bringing the total number of things that need to be dealt with down to a much more manageable 9,999. East coast people, we will see you soon!