Monday, August 29, 2016

Week 158: Fall color

And just like that, fall is upon us.  Our neighbor's red maple is showing its first hints of color.  The mornings are getting chillier.  Not so chilly that one can't go outside and ride one's tricycle in one's favorite short sleeved PJ's, should one chose to do so, although those days are coming. Honestly, I am already dreading the approach of winter and what it may have in store for all of us, but I try not to think about it too much.  Summer has been so, so good to us and I don't want to let it go.

This week, we have Lemon's orientation for 3-year old preschool on Wednesday, and his first day of school is Friday. I know that he will love it and that it will be good for him, and those two things make it worth whatever the risks are.  His new classroom will only have one teacher (as opposed to two last year) so I don't really know how she will manage to get enzymes into him at snack time with all the other kids milling around, but I suppose she will work out a plan.  I need to work with Lemon's nutritionist to come up with a plan to get extra calories into him on school days, since he will miss the bolus he usually gets with him morning snack while he's at school.

Speaking of which, we were scheduled to go to the CF clinic for a check-up on Wednesday before the orientation.  As many of you will recall, Lemon's doctor left our hospital about 6 months ago, and while they've been searching for his replacement, we've been seeing the nurse practitioner.  We were supposed to see her tomorrow, but I got a call this afternoon from the clinic saying she's going to be out, and that we will instead be seeing some other nurse practitioner.  One who's never seen us before and doesn't specialize in CF.  Yeah, I don't think so.  How is it supposed to be worth our time, and the risk of infection that every hospital visit brings, to see a practitioner that doesn't know us or our disease?  Suffice to say, I'll be calling the clinic back tomorrow morning to reschedule.

Other than that, I'm filling some of my copious spare time searching for a new afternoon babysitter for the boys, since our old afternoon babysitter just started her fall semester and her schedule doesn't allow her to take care of the dynamic duo anymore.  I feel like I've gotten mellower about this process, too--back when we first moved to WI, I led with CF--it was in the ads that I placed that our son had "a medical condition," which I'd discuss with candidates when I interviewed them.  Now, I don't lead with it anymore.  It's not in the ads, and I do ask if candidates would be comfortable giving a kid medication and can be scrupulous about hygiene, but that's it.  CF doesn't define who Lemon is, and I feel like leading with it just creates unnecessary anxiety.  Hopefully we'll find someone soon, or my own anxiety about actually being able to do my job will be well-justified!

Monday, August 22, 2016

Week 157: The first three years of life

We made it.  Lemon is 3.  What a year he (and we) have had.  Weeks and weeks of oral antibiotics.  Two hospitalizations and two courses of IV antibiotics.  A surgery.  Something like 400 hours of time spent in the vest.  4.5 liters of nebulized medications.  Over 100 liters of Pediasure. And all the usual shenanigans of having a bright, active, curious, opinionated two year old--including a broken arm.  And an infant doing his thing alongside.  I had every anticipation that the 0/2 year was going to be a doozy, and it did not disappoint.  I am (mostly) not disappointed to have it in the rear view mirror, and am looking forward to seeing what the 1/3 year has to offer.

Lemon and Nona have birthdays just a day apart, so we had a joint birthday party for them on Saturday. Lemon was a bit skeptical about the consumption of birthday cake (cake being a food after all), but Lime really showed him how it was done.  

Lemon got lots of nice things for his birthday--a new backpack to carry to three-year-old nursery school in a few weeks, a new tricycle, some more Duplos, and so forth. 

The birthday celebration continued at Fire Station Fun Day at our local fire station.  In spite of his fascination with fire trucks, it took Lemon a while to work up the courage to actually get up close to one and climb inside.  Once he warmed up to the idea, though, he had a good time.

One change that we've really seen just over the last week or two is the blossoming of the relationship between Lemon and Lime.  Lemon has figured out that Lime is his #1 best audience and will crack up into peals of baby laughter if Lemon does anything even remotely amusing.  He's also figured out that Lime has the potential to be fun to play with.  Unfortunately, he hasn't fully mastered the whole concept of "playing with" someone, so "playing with" will quickly devolve into either "grabbing from" or "sitting on."  But, the potential is there and I'm looking forward to watching it grow over the next year.

Earlier today, a friend of mine posted a picture of himself and his brother getting ready to run a marathon together, and it's really stuck with me, but it took me until mid-way through mowing the lawn to figure out why.  It stuck with me because this is something I want so much for my two little guys--to grow into the kind of men who will run marathons together in their 40's.  We CF families live very much in the present, and I try not to dwell too much on what the future may bring. But during this birthday week, I can dare to dream a little. Here's wishing for health and happiness for all of you, and all of us, in the year to come.

Monday, August 15, 2016

Week 156: In and out

I am not prepared to process the fact that it is mid-August.  Where, exactly, did the summer go?  Where, exactly, did my sweet baby Lime go, and who is this toddler who no longer crawls at all?  Who is this love who imitates strings of three syllables, who points at things (sometimes including his father) and says "Dah!" with great enthusiasm and conviction? Who is this rapidly moving little cherub who, if dinner does not appear fast enough, will be seated next to his best friend, Daphne the cat, at the food dish, sharing her kibble?  I wish this last question was an exaggeration, or at least was not a reflection of the truth quite as often as it is, but there you have it.  We buy high quality cat food that is high in protein and low in ash, so that's some consolation.

Lemon will be 3 this coming Friday.  He is bursting with intelligence and dexterity that he doesn't yet know how to direct.  So, a lot of it is applied to tasks that, intentionally or otherwise, drive his parents to distraction.  Case in point, our ongoing battle with nutrition.  Some of you will remember that during July he managed to gain a precious pound, and I don't want to discount that accomplishment.  But, he's managed that with a complete tube feeding 5 nights out of 7, which makes me wonder what we could achieve if we were hitting 7 of 7.  What happens those other nights, you may ask.  Well, here are some things that have happened lately:

1.  Lemon knows (and has known for some time) how to disconnect the feeding tube from the button on his belly.  When he does that, the pump, feeling no resistance, continues to pump, such that the formula goes all over the sheets, PJs, etc, until the bag is empty.  Last night, Lemon decided that his formula-soaked bed was no longer suitable for sleeping and used his mostly-dry quilt to construct himself a nest on the floor, which is where I found him when the pump finished its cycle at 3 a.m. Much laundry ensues.

2.  Lemon has mastered the art of turning off the pump.  A pump that is off makes no noises to alert one's parents that it is off, and if it's off, no food goes from the bag into the boy.  At least no laundry is required to deal with this failure mode.

3.  Lemon has mastered the art of turning down the rate on the pump.  This results in a confused mama waking up at 3 a.m. wondering why she hasn't heard the pump alarm go off.  Ultimately, against her better instincts, she stumbles into his bedroom and gazes in half-awake stupor at the number displayed on the pump's screen, attempting to determine its relationship with 83, which is the number that should be there.  Upon determining conclusively that, yes, 42 is distinctly less than 83, she is forced to shut off the pump even though there is still formula left in the bag, since morning therapy is only 2.5 hours away. Again, no laundry required, but, seriously, the things you never expect to confront as a parent...

4.  Puking.  We still don't know exactly why this happens so much, probably twice a month.  This week, it was definitely the result of actual illness, since Lemon ran a temperature of 102 for a couple of days, probably the same thing Lime had a week or so ago since the symptoms were more or less identical.  But most of the time, it seems random.  I used to think that it was due to our incomplete mastery of Lemon's digestive chemistry and mechanics, which may still be a big contributor.  But, an equal contributor, I believe, is a combination of Lemon's very sensitive gag reflex plus his desire to stick toys or other objects really far into is mouth, especially when bored.  He doesn't seem to be particularly bothered by puking.  In fact, it seems like he finds the whole thing rather exciting, since both Mama and Papa stagger in, turn on the lights no matter the time of night, strip the bed, strip the Lemon, wipe down various surfaces and body parts with appropriate cleaning supplies, remake and reclothe, re-sing and re-tuck, and so forth.  I wish we could make less of a big deal about it, but we've got to clean up, right?  And, so much laundry.  So much.

Ever onward, as they say.  If 5 nights out of 7 works, then so be it.  He won't be 3 forever, just for the next year.  We will make it--I hope the same can be said of our washing machine.

Monday, August 8, 2016

Week 155: Swim for it

OK, you guys, the Olympics are on.  I'm a competition junkie and a total sucker for NBC's little strategy of "If you just stay tuned for the next 20 minutes of commercials, we'll watch an amazing 54-second swimming race!"  So, this week's post will be short and sweet.  We were on vacation anyhow so not much happened.  Our little trip to Lake Geneva was awesome, the kids loved it, and it wore them out such that they fell asleep in the car on the way home in the amount of time it took me to pull around from our room to the front entrance of the hotel so Papa Bear could check out.  Lime got a little sick at the end of the trip but he seems to have shaken it off now.  Our few days off at home were nice too.  Papa Bear and I went to the movies together for the first time in 2.5 years.  Star Trek did not disappoint.  This weekend, we went to the annual Mustard Festival, where Papa Bear declined to taste this year's signature frozen custard flavor (chocolate mustard cherry) because he does not like cherries.  You can't make this stuff up!  Back at you next week with a more substantive post, unless there are conflicting track and field finals...

Monday, August 1, 2016

Week 154: Holiday!

On Wednesday of this week, Lemon had his three year old check-up with the pediatrician.  His old pediatrician left, so this was our first visit with her replacement.  Overall, he seems competent enough and honestly, although he bears the title of “primary care provider,” he is really not anything of the sort—pulmonology drives our care start to finish.  But, it was a great visit nonetheless.  Lemon is hitting all his developmental milestones, is in great health “aside from having cystic fibrosis,” and most importantly, gained a pound in the last month (65th percentile for weight!!!!!!!!).  So, although I hate the bolus feedings that we’re doing 2-3 times a day now, at least they’re having the desired effect.  And, it somewhat comforting to think that if we could just get Lemon to eat 200-300 calories per day by mouth every day, we could give up the boluses and he would still gain weight.  It’s sad to think that we’re so far from even that tiny amount of oral intake right now.  In the last 24 hours, for example, his oral intake has been 2 bites of melon and about 30mL of Orangina.  It’s a start, I guess.

On Sunday, we left Madison for our family vacation in Lake Geneva, about a 90 min drive away.  It’s called the “Newport of the Midwest,” and like Newport, RI, it is filled with mansions from the 1890’s-1920’s, when the 1% of the day needed a summer retreat from the heat and smells of Chicago and Milwaukee.  There is definitely an element of the 1% still present, but the heart of the town itself is pretty much given over to families on vacation.  Our hotel room is huge, big enough for the staggering amount of equipment and supplies we seem to need to go anywhere.  It also has some really nice outdoor pools, which the kids LOVE.  We learned the math today—1 hr swimming = 3 hour nap.  In other words, brilliant.  It means even Papa Bear and I get to really rest.  Good thing, since we need energy to deal with the fact that, on top of everything else, Lemon decided to disconnect his feeding tube twice last night.  At least now the hotel room smells like home, with the cloying chemical vanilla smell of Pediasure in the air.

Since I’m on vacation this week I’m going to keep this brief.  We’re still sad not to be in Boston, but we’re enjoying this trip and feel like in the end this was the right decision for now.  It’s encouraging to see families with kids a bit older than ours, and to see the possibilities will open up for us again in not too much time.