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.

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...

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 (65^th 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.

 

 

 

 

 

 

Week 153: Bailing

As if he had just read the "one walk, two talk" memo, Lime decided that, being one now, it was time to start walking.  He took his first steps on Tuesday, and has been walking more often and further each day.  It's so fun to watch, even if, this being  the second time around, I have a clearer comprehension as to what this new development means for my sanity.
 
This weekend, we went to the annual county fair.  As was the case last year, tractors captivate Lemon's imagination far more than animals.  Lime, on the other hand, seemed pretty keen on the flesh-and-blood attractions, so with any luck there will be some diversity of interests in our household.

Like much of the country, we had some pretty extreme weather this week, including a flash flood in our neighborhood.  It's hard to capture these things with a camera, at least if you're me, but I think you can tell even from my iPhone picture that our street effectively turned into a river for an hour or two.  Of course, this flooding precisely coincided with the window of time that I had scheduled to bring a home-cooked meal to a fellow CF mama with a kid in the hospital.  So, that plan went down the drain, or it would have if the drain had not turned into a geyser.  Good thing we CF mamas are well-practiced at handling disappointment.

One "feature" of our house is that we have a walk-out lower level.  In storms of this severity, of which there have been two since we moved to Madison, the walk-out turns into a flow-in, resulting in flooding of our playroom.  Last time this happened, we didn't know it was going to happen, and did not have the appropriate equipment on hand.  This year, we felt a little smug since we already owned the wet-dry vac and knew where to strategically position the dam of towels.  Papa Bear and I spent a quality hour or so vacuuming, dumping, wringing, and wiping until the rain eased and the water level went down again.

The last development of this week is actually about next week.  We had planned to leave on Friday for a trip to Boston, to visit all our dear friends on the east coast.  We've had some reservations about going, because in addition to all the hassles imposed by traveling with our assortment of medical equipment, our kids seemed to be at the worst possible ages for traveling.  Lemon is nearly 3, and is in a particularly willful frame of mind.  He resists everything, and somehow that seems to involve Pediasure 1.5 getting on every surface in our house. Potty training is a work in progress, not without its setbacks.  Lime is very good-natured but with his newfound mobility does not like to be restrained for even an instant. Or, to summarize from Papa Bear's perspective, "The kids are pretty much unstoppable wrecking machines that spew liquids from all orifices continually."


The closer we got to the trip, the less advisable it seemed to go.  I hated the idea of canceling a trip for no other reason than it seeming like a bad idea, since we've had to cancel so many trips for other, more substantive reasons since we moved out here. But, we just couldn't see how this trip would end up being a "vacation" for Papa Bear and me, or really, for the kids either.  So, we're postponing.  Our tickets are good until January so we are hoping to repeat our trip of last year, for the week between Christmas and New Years. In the mean time, we'll head to a hotel on a lake nearby with a couple of nice swimming pools an a pool-side bar for a few days, which will hopefully provide a fun and relaxing (as possible) experience for everyone in our little family.

Week 152: Reap

As we get deeper into July, our garden is really getting into high gear. We (or at least I) enjoy our daily trips down to the vegetable garden in back to check on the plants.  Some of us enjoy these trips more when the hose is involved, whereas others of us find that to make the situation significantly less zen-like.

Lime had his one-year check-up this morning.  He continues to be my little teapot short and stout, hanging on resolutely in the 6th percentile for height.  He's a bit less stout now, though, only the 12th percentile.  I can't say I'm surprised, given the percentage of his waking hours he spends in a state of rapid motion.  In addition to crawling at Mach 2, he also now stands unsupported and will take a single step in any given direction, as if to remind us that bigger trouble is just around the corner. 

Lime had his first blood draw today, to test his lead and iron levels.  The technician couldn't find a vein in the first arm she tried, so she had to switch to the other arm.  Lime was less than thrilled.  I think she was surprised and how un-rattled I was by the whole proceeding, because based on nothing at all, she said, "So, you're a nurse?"  I said no, I just like to stay calm so that the kids stay calm, which is true, but I think doesn't quite capture exactly why something like a blood draw, even one that doesn't go perfectly, barely registers for me anymore.

Lemon continues to get closer and closer to being three, both chronologically and developmentally.  I've noticed an exponential increase in the use of the word "why" around our house of late.  My favorite, if you can call it that, is when he does something that he knows is wrong, and I tell him no, and then he asks, "Mama, why did I do that?"  I wish I knew, kiddo.  Tonight's example: setting off the alarm on his feeding pump by biting down on the tubing.  Anyhow. 



We're a little bit apprehensive this week because this morning Lemon received his last dose in a two-week course of levofloxacin, which we started to fend off a summer cold.   I don't actually think there's been an occasion in his life where a single two-week course of an oral antibiotic cured him of anything, but here's hoping for a first.  Honestly it's so hard to know what baseline is for him anymore.  It used to be no cough at all.  Now, I think baseline is a little bit of coughing during his treatments, and maybe a cough when he wakes up.  It's hard to know exactly, because I never quite know if the cough is the beginning (or end) of something or not.  We're really hoping whatever we're hearing now isn't anything, since we're supposed to travel to the east coast in a couple of weeks.  Honestly I'm struggling to imagine how the trip will be logistically possible even under the best of circumstances, but I suppose we'll manage it somehow.  Lemon is really excited to fly on a plane again, and we're really looking forward to seeing all our old friends "back home." 

Week 151: Baby no more

It is hard to believe, but yesterday was Lime's first birthday.  What a year we've had since he was born.  As I look back on it, I think that yes, in some ways, having a baby during this past year did make things harder.  Sometimes much harder.  But, having a baby along on this wild ride made things, if not easier in absolute terms, easier to bear.  Lime has been a constant joy, a delight, and a comfort to me.  I don't know how I would have gotten through the year without him.  I am thrilled by how fast he is growing, how quickly he's becoming his own little person, how close he is to walking.  And I'm slightly heartbroken that I soon won't have a baby anymore.


















We celebrated this milestone with Uncle Jared and Auntie Lauren, who came to visit from New York.  It gave Lime's first year a nice symmetry, since Uncle Jared was also here in town exactly a year ago, when Lime entered the world.  We shared a few nice meals, and of course, some birthday cake.  We even captured a semi-decent family photo, to compliment the accurate but less frame-worthy one Papa Bear snapped a few days earlier.




 This birthday means that we're just a few weeks shy of the end of what I refer to in my mind as the 0/2 year.  Uncle Jared asked  me over dinner one night if I thought that this would be the hardest year for our family.  I have to say I honestly have no idea.  I have long since given up even the pretense of making predictions about the future.  I hope that the next year is filled with love and health for both of my boys, and I will do everything in my power to make that happen. And beyond that, we'll just have to take it as it comes.   

 

Week 150: Summer cold

Nothing lasts forever.  We'd enjoyed a stretch of great health for Lemon, pretty much the entire time since mid-March.  It's been wonderful to let CF take a back seat to the rest of our lives for that time, but it's time to refocus.















First of all, we had our clinic visit on Wednesday.  On the plus side, Lemon is weighing in at around 31lbs, which is a huge improvement over the 26lbs that he was when he had the G-tube placed.  On the minus side, he's weighed 31 lbs pretty much since the beginning of April, not the continuing weight gain his team was hoping for.  In some respects, this is hardly a surprise.  His nightly formula dose was calculated to be just over 50% of his daily needs.  But, of late, he's pretty much given up eating or drinking anything more substantial than Popsicles, which means he's only getting half as many calories as he actually needs.  We can't add a fourth can to the three cans he's getting overnight, because if we did that he'd be too full to tolerate his therapy in the morning. 






So, as a stop-gap, we're adding bolus feeds during the day.  Basically, after each of his "meals," we're pumping 1/3 a can of formula through his tube after he's done, so he's getting an extra can a day.  He's tolerating it fine and seems to get a kick out of pushing the formula through, but for his staff (ie parents) it means washing out three syringes three times a day, having open cans of formula in the refrigerator where they always threaten to spill, remembering to set up the syringes before every meal, in addition to setting up the meal itself, etc.  There's always one more thing.  Hopefully it will make a difference in terms of his weight gain.





















Then, of course, there's the cold.  A little summer cold, both kids have it.  In practice, what this means is that Lime sneezes from time to time, has a runny nose, and coughs occasionally.  Lemon, meanwhile, coughed to the point of vomiting the first night.  Having been through this before, Papa Bear and I immediately cut back on his night feed to two cans, delivered at a slower pace, which he seems to be able to tolerate even when he's sick.  So, although there's been a lot more coughing, at least all the formula we're putting in is staying in.  We waited this thing out for five days, doing chest PT 3 times a day, but today we decided that we'd better call in for antibiotics, so now we're locked into two weeks of levofloxacin.  It was a tough call to start antibiotics, but we had to be realistic.  Lemon has never in his life kicked a cold without a course of antibiotics, and the longer we held off the harder it would be to clear this.  Sigh.  Let's just hope a single course of oral antibiotics does the trick!

































In non CF news, we've been doing lots of fun things.  We enjoyed the rest of Grandma and Grandpa's visit very much.  Then this weekend, we went to a fair and saw lots of farm animals.  We played at the splash pad.  We're looking forward to a visit from some more of our New York MVP's later this week, when Uncle Jared and Auntie Lauren show up for a visit.  And, last but by no means least, we're looking forward to celebrating Lime's first birthday next weekend.  I can hardly comprehend that it has been a year, and what a year it has been!