Monday, February 24, 2014

Week 27: Families

Lemon is now half a year old--hard to believe.  He can do so many things that he couldn't do when he was born--sit up, smile, laugh, grasp things with his hands, and eat solid food.  It's hard to imagine that in another 6 months or so, he'll be walking.
In honor of his 6-month birthday, I took Lemon for his first check-up with his regular pediatrician here in Wisconsin.  She had been recommended to us by Lemon's CF specialist, and I quite liked her.  Lemon seemed to like her as well, and laughed uncontrollably as she palpated his stomach.  He's continued to gain weight well since we adjusted his enzyme dose, and is now up to 15lb 14oz.  He was less a fan of the five different immunizations that he got during the appointment.  They threw him for a loop for several days after.  He spiked a fever the first night, and still (3 days later) hasn't fully regained his normal appetite, although thankfully he's most of the way back.  It will be interesting to see how his weight's doing when I take him for his last Synagis shot on Friday, but at least if he hasn't been gaining weight well this week I'll know why.  I'm confident that if necessary he'll catch back up in the weeks to come, once he's feeling better.

Also this week, Papa Bear and I attended our first meet-up with other CF families in the Madison area.  It was hosted at a restaurant in downtown Madison, and about a dozen or so people braved the not exactly ideal weather to attend. It was wonderful and terrifying to meet these other families.  Wonderful to meet another family with a CF infant, who are going through the same struggles that we are.  Wonderful to meet a woman who has a 20-year-old son with CF who has never been hospitalized (an outcome we hardly dare to hope for).  Terrifying to meet a woman who lost her son to CF, and a woman who lost her sister (outcomes we barely allow ourselves to think about).  Overall, though, it was so encouraging to meet this group of people who are as dedicated as we are to finding a cure, and to know that we will be part of this little Madison community for many years to come.

Finally, this weekend we had a nice visit from Opa and Uncle Jared.  Unfortunately we don't have any pictures of Opa, since he was behind the camera for most of the time, but he captured many of the nice moments that we shared while they were here.  It was too bad that Lemon was still a bit out of sorts from his shots, but he still was able to pull himself together enough to smile for the camera every now and again.  Sadly it will be a few months before we see these guys again (although don't feel too badly for Opa since he is heading of on an adventure in Patagonia in a few days!).  Being so far from our families (and friends) is one of the hardest things about being in Wisconsin, and something we struggle with every day.  Technology does help to make the world smaller, but not small enough, I think.

Monday, February 17, 2014

Week 26: A day in the life

Heading in to my third week of working life here in our new home, things have sort of settled into a routine.  So, I thought I would use this week's post to take you all through a typical day in our household--in this case, today, Monday February 17.  As I think through the day, I realize how fortunate we are that this day is pretty much like a day in any family with two working parents and a baby--CF doesn't play into it too much yet.  So, future days will probably look very different, but here's a look at how things are now.

"Day" began at 3:40 a.m. when the gentle squawks and flashing lights on the baby monitor alerted us to the fact that Lemon had woken up for his early morning snack (aka "first breakfast").  Papa Bear went in to Lemon's room, changed his diaper, and brought him back to our bedroom, where I gave him his enzymes and let him nurse.  I also gave him his vitamins half-way through the feeding, because I've found that if I don't do them during that first feeding, it's hard for me to remember them later in the day.  I put him back in bed at around 4:10, and went back to bed myself.  Sorry, no photo documentation.

Lemon was up for the day around 6:10, so Papa Bear got up with him while I stayed in bed for 10 decadent, sanity preserving minutes until 6:20. 

Then I got up, picked up the enzyme bottles, the dish of applesauce, the baby monitor, and my phone, and headed into the living room, where it was time for chest PT, followed by "second breakfast."

By 7 a.m., we were in the dining room where Lemon was having "third breakfast" consisting of oatmeal, banana, and egg yolk.  Somewhere in there Papa Bear and I managed first breakfast, watching the clock rapidly tick down towards our 7:30 departure.

At 7:10, we headed to the bedroom to get dressed.  One big advantage of Lemon being able to sit unsupported now is that he can just hang out with us while we run around trying to be decently clothed before the nanny shows up.  Somehow, I've always managed to have pants on when she arrives, although there have been some very close calls.

The nanny usually arrives around 7:25, and we hand Lemon off to her so that we can make final preparations for departure.  Sorry about the picture being blurry, I think I was literally running out the door when I took it.

Papa Bear and I drove to work together (yes, I realize that many people observed a federal holiday today, but not in the state of Wisconsin!), and I was at work at around 7:55.  I spent many happy hours there, alternately trying to translate a really atrocious scientific document into something resembling comprehensible English and running down to the bathroom on the first floor (which has a room with a shower that has a locking door) to pump.  Getting up to go downstairs also afforded me the opportunity to observe the massive quantities of snow that were falling.

Since it was snowing, and Papa Bear's last meeting of the day was cancelled, we left work a little early, with the idea that we'd put in an hour or two when we got home.  We chatted for a few minutes with Nona before she left the house, and then actually did do over an hour of work, discussing another really poorly written proposal that I'm fixing up.  I know it's hard to tell from the picture that work is occurring, but trust me, it is.

Lemon looks particularly pleased with his contributions to the discussion,

but eventually he grew bored of all the scientific terminology and retired to the Jumparoo.

Then, it had stopped snowing and was time for me to (once again) shovel the driveway.  We got about 6 inches this time.  In order to keep myself motivated, I made up inane, overblown NBC Olympics-style commentary: "This young woman is a really interesting shoveler.  She was trained on the snows of New England, but can she handle the snow of the Midwest?  You can see that she can still hear her father's voice in her head motivating her, looking for those clean edges on the driveway.  Ah, she's going fakey at the bottom, she'll definitely get style points with the judges for that."  Our driveway is even starting to resemble a half-pipe...

Meanwhile, Papa Bear put Lemon to bed at around 6.  The driveway was cleared by around 6:15, and massive carbohydrate cravings kicked in, so I came in and made dinner.

Then I made some baby oatmeal and packed up Lemon's food containers for tomorrow, with added oil and salt in each one, of course. 

Finally, at around 7:20, I sat down to write this post.  The only remaining agenda items are showering, watching the Olympics, washing up a bit in the kitchen, packing my lunch, pumping one last time, and trying to get to bed by 10.  And tomorrow is Tuesday...

Monday, February 10, 2014

Week 25: Back on track

The great news this week is that Lemon is back on track with his weight gain.  After the disappointing weigh-in last week (after a couple of weeks with just one Creon 12,000 per feeding), we upped his enzyme dose to one Creon 12,000 plus one Zenpep 3,000 with every feeding.  We wanted to see if just increasing the amount of enzymes per feeding could help.  That, and we increased Lemon's solid food to 3 times per day.  Lo and behold, those two changes made a big difference.  At Lemon's weigh in on Friday, he was back on track.  You can see in the blue area of the graph how Lemon's rate of weight gain was very slow with just the Creon, and bounced back when we increased the dose by adding in some Zenpep.  Based on that, we're adjusting Lemon's dose to one Creon 12,000 and one 6,000 to see if that will be enough to sustain his weight gain.  In summary, Creon will probably work out for Lemon after all, but the transition in dosing between the two brands wasn't nearly as seemless as we would have liked.  Nevertheless, we've (hopefully) figured it out now.  It is such a tremendous relief that he is doing well again.

This week we also had our first out of town guests in our new house.  We had an absolute blast with them, and it made painfully aware of absence of all the friends we left behind back east.  Someday I'm sure we'll have some friends who live here, although at the moment it is quite difficult to envision under what circumstances we might meet them, what with our copious free time and so forth.

In any event, our visiting friends were looking at the possibility of moving to Madison, although I'm not sure they'll still be considering it after experiencing winter here--mother nature came through with a little more snow and some pretty decent wind chills in honor of their visit.

In honor of the Olympics (read: I spent too much of this evening watching various people go very fast on frozen water in assorted configurations), I'm keeping this week's entry short, and I'll end with one profound question--how did anyone ever watch the Olympics without a DVR?

Monday, February 3, 2014

Week 24: Up and down

This week was my last week off before starting my new job.  Our nanny started this week so that she and I would have a week of overlap to get Lemon accustomed to her (and vice versa).  This gave me some freedom during the daytime hours, which I took advantage of to do a little bit of outdoor running.  Once I start working, I'll basically be restricted to training at night, at least during the week (treadmill is coming), so it was good to have the chance to try out a few more variations of my neighborhood running loops.
I've found it very hard to set up Lemon's room since we've moved, because when he's awake, I'm busy hanging out with him, and when he's asleep I can't be doing much in his room.  This week, I finally managed to make a little headway in Lemon's room, getting some decorations up on the walls and putting some things away in the closet at last.
Another treat this week was a visit from Opa.  Lemon displayed his first episode of stranger anxiety when Opa first arrived, but he quickly got over it, and had a lot of fun playing with Opa and exploring some new solid foods.

On Friday, I took Lemon over to the CF clinic to get his hard-won Synagis shot.  In Boston, these were given by the pediatrician, and the procedure was straightforward--we'd go in, they'd weigh Lemon, calculate the dose, the nurse would draw it up, inject him, and we'd leave--about 20 minutes all told.  Here in Madison, the shots are given at the hospital, and the procedure is that we go up to the clinic, go to the highly inefficient intake room where I strip Lemon down to the skin and weigh him, then gather all of his clothes back up and take him to an exam room.  The nurse calls his weight down to the hospital pharmacy, which draws up the injection and pages the nurse when it's ready.  I was told that could take as much as an hour, although luckily they must not have been too busy that day and it only took about 30 minutes.  Then, the nurse gave Lemon the injection, and then we had to sit in the exam room for 20 minutes to wait and see if he had an adverse reaction.  After that, we were free to go.  So, it was a long and boring appointment, but we found ways to pass the time.

One way was to squeeze in a bonus meeting with the nutritionist.  As you loyal readers will recall, our new insurance plan didn't cover the brand of enzymes that Lemon was on in Boston, so we had to switch to a new brand.  Papa Bear and I were both nervous that the new brand wouldn't work as well as the old one, but the insurance company said that we had to at least try the new brand, and if it didn't work, then they would consider paying for the old brand.  So, this appointment was Lemon's first weigh-in after switching to the new brand of enzymes, and we were anxious to find out how well they'd been working.

Lo and behold, they don't seem to be working nearly as well
as the old brand.  Lemon had been sticking right on his growth curve for weight since he was diagnosed, at around the 20th-25th percentile.  Since we switched enzymes, two weeks ago, he's totally fallen off that curve and is now down around the 10th percentile.  To put it differently, at this age he should be gaining about 25 grams per day, and instead, over the past two weeks he's averaged a measly 4 grams per day.

It's hard for me to convey in language that I feel comfortable posting on the internet how angry I am at the insurance company for forcing us to do this experiment on our child.  It is so critical for him to gain weight at this stage in his life, and he was on such a good path.  Now we've put ourselves in a hole that we have to dig ourselves out of, and for no reason other than to appease some nameless person or fulfill some requirement in an untitled rulebook. Hopefully now that we've demonstrated a total failure to thrive on their first-choice brand, we can switch back to the brand that works and Lemon will bounce back the way he did right after his diagnosis.  That fight will begin on Friday, when I try to push his doctor to write a letter of medical necessity to the insurance company to convince them to cover Lemon's old brand of enzymes.  As far as CF goes this isn't a big deal compared to the problems we will tackle down the road, but the fact that it was totally avoidable is what kills me.

In any case, the nutritionist helped us develop a new plan that we're trying out this week to get Lemon to start gaining weight again.  Lemon has been enjoying solid foods quite a bit, so we're increasing his solid food to three servings per day, and I'm enriching all of his solids with mashed hard-boiled egg yolk and canola oil to get as many calories into him as I can.  It's hard to go back to work when everything isn't going quite as well with him as I would like.  I'm very lucky to have the combination of a great nanny and Nona to take care of Lemon when I'm out of the house.  At least by preparing all his meals myself I know that all the right things are going into them, and with any luck we'll be back on the right enzymes before long.  Then we can put this whole stupid episode behind us and be ready to face whatever challenges come next.