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.

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...

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?

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.

Week 23: The golden shovel

It feels as though I did very little this week other than shovel snow, but if I push myself I can recall a few other scattered moments...

Last week, we'd heard our insurance had declined to cover Lemon's last two doses of Synagis, as we had sort of expected.  We'd appealed the decision, though, and were told that if we wanted to we could participate in the appeals board's discussion via conference call.  Our understanding was that we could listen to the board's conversation, and then when called upon we could add our two cents.  Papa Bear and I did some reading the night before the call to refresh our memories on the current research on Synagis and CF so that we would be ready. 

My phone rang at the expected time, and we were ready to listen to what the board had to say, and then speak our piece.  As you can imagine, we were very surprised when the woman organizing the call just said "Hello, do you have any comments for the appeals board as they consider their decision?"  Even though we were a little surprised, I think we managed to spit out some vaguely coherent sentences about continuity of care, and that the lack of clinical data on Synagis and CF is due to CF being a rare disease, not due to a lack of efficacy of Synagis in CF patients and so forth.  As soon as we were done, the woman thanked us and hung up.  We have no idea who (if anyone!) was even listening to what we had to say, or what they thought of our comments. 

The good news is that we got a call back a few days later saying that we were approved for the two additional doses that Lemon was scheduled to get this year.  Phew!  The insurance company said there's no guarantee that they'll approve Lemon for next year, but I just said what I honestly feel--we're taking one winter at a time.  I also found out that unlike in Boston, where Synagis was given in a quick visit at the pediatrician's office, here it's a 90-minute visit to the pulmonology department at the hospital.  I'll save the description of why that is for later this week, when I'll be trapped in an exam room with a bored baby for no reason other than general inefficiency...

On Saturday, we went on a little field trip downtown to the indoor winter farmer's market, which is extremely lively.  Even though it's the middle of winter, the market is still jam-packed with extremely tempting stuff, and I had to be strict with myself to only spend the amount of cash that I'd allocated.







After the farmer's market, we went to the public library to register for library cards.  It turns out that the main library has its own chocolate shop inside--what could be better?  If you're there, try the Parisian hot chocolate--it's very small but packs a wallop.
 

After finishing my interviewing process, I hired someone to watch Lemon when I go back to work starting next week.  I'm very confident in her abilities, and she actually started today so that we have a week where she and I are both here to help smooth out any kinks.  She's very calm and experienced so I have every reason to think that things will be fine, but of course I'm still nervous.  I have to keep reminding myself that I had no special training that enabled me to open enzyme pills or look at baby poop before Lemon was born, so there's no reason that she can't pick it up quickly.  I had to leave the house for a few minutes right after she arrived to drive Papa Bear to work, and Lemon was asleep so I was telling her what to do when he woke up, and at some point she said, "Don't worry.  It'll be fine.  You'll be back in 15 minutes."  And it was fine.  So later in the morning I went to Home Depot.  Don't tell me I don't know how to have a good time.

In other news, the cats have completely adapted to their new home--I think they've totally forgotten that they ever lived anywhere else.  I can hardly say the same for myself, but at least this place is starting to feel vaguely familiar, and a little bit less like some weird parallel universe.  It's certainly not home, but it's getting there.

Week 22: 5 months young

Thankfully, this week was a bit less exciting than last week, because honestly I think all of us have had enough excitement for a while and are eager to settle down into something resembling a routine in our new hometown.  To that end, I interviewed a bunch of candidates to watch Lemon when I go back to work starting February 3rd, and identified a few that were promising.  No one seemed particularly fazed by the idea of taking care of a baby with CF, and honestly I don't know whether to tell them that it will be easy or that it will be hard, since only time will tell us that.  And, most likely, it will be a mix of both.  This coming week, I have second interviews scheduled with two candidates to see how they do during a little more prolonged interaction with Lemon, hopefully including both a feeding and a nap, and then I'll pick a winner.  The new nanny and I will have a week together before I start work to hopefully make the transition as smooth as possible.

I've also continued to practice driving--I think I'm now approaching 100 miles in our new car (probably representing 50% of the total miles I've ever driven in my life).  This past week, my wanderings included a field trip to the neighboring town of Verona, where I went to the Sow's Ear, a combination coffee shop and yarn store.  It's pretty much as heavenly as it sounds.  I got some nice yarn for a special project, because I have so much free time for knitting right now.  Well, not exactly, but with the Super Bowl and the Olympics coming up, there is certainly an enhanced possibility of doing some knitting sometime soon.

Speaking of the Super Bowl, sadly Lemon's team did not come through for him on his 5 month birthday.  He nonetheless enjoyed his special outfit (courtesy of Uncle Jared) and will continue to use it to display Patriots pride in this Packer-heavy town.

As Lemon has rolled through the past few weeks, he's continued to make lots  of developmental strides.  In the category of "they grow up so fast," he's beginning to outgrow his floor gym, where he has spent so many happy hours of his little life.  We got a Jumparoo for him before we left Boston, and got that set up for him shortly after arriving in Wisconsin.  He just loves it, even though is legs are still just a smidge too short to hit the floor, even with the seat at the lowest setting.  Nonetheless, he prefers it to the gym now, since he wants to be upright like a real little person, not flat on his back like a baby!

 He's also begun displaying a lot of interest in solid food, so we asked at his CF clinic visit what the nutritionists recommended as first foods.  They recommended either avocado or "baby meats," so we went with avocado, which Lemon seems to like, at least on a trial basis.  We decided not to rock the boat by asking about the feasibility of raising a vegetarian CF baby until the next visit.  Since he'll be getting most of his nutrition from milk for the next few months anyhow, it doesn't really matter what foods we start him with--we just wonder whether we'll be able to get away without feeding him meat once he's bigger.

Lemon has also gotten much more interested in reaching out and grabbing things with his hands, particularly my face and hair.  He is also interested in anything that I bring towards his face, including the dropper from his bottle of vitamins, which can have interesting results.  

For those of you who are interested in a little extra reading, I highly recommend an article by Jerome Groopman in this week's New Yorker, about caring for children with chronic illnesses (link to the article here, let me know if you want to read it and don't have a subscription and I'll send you the PDF).  It discusses how to approach a new problem in medicine: since children with chronic illnesses are living longer and longer (which is wonderful news!), what is the best way to coordinate the myriad specialists that are involved in their care?  How should medical professionals help parents to figure out the best course of action for their child, in the face of so many different choices and no obvious right answers?  Of course, the program described in the article was developed at Boston Children's Hospital, where we used to go, so it made me doubly sad that we had to leave the wonderful clinic there.  Hopefully we can help the clinic in Madison establish some of these same practices, so that as Lemon gets older, he can benefit from the new ideas described in the article.  For now, we're just bracing for this week's battle--as we had expected, our new insurance company declined to cover Lemon's remaining two Synegis shots.  We have an appeal phone call on Wednesday morning where hopefully we'll be able to bring them around to our side--fingers crossed!  

 

Week 21: The same but different

We had our first visit at the Madison CF clinic this week.  In many ways, it's the same as the as the Boston clinic, but of course in some ways, it's different.  The first difference is that I drove us there in our new car, totally without incident I might add.  As I mentioned in a previous post, one big difference between the Boston and Madison clinics is that the Madison clinic actually has a waiting room, since they have many fewer CF patients than Boston and seem to be a bit less paranoid about patient-to-patient transmission of infections.  They do, however, request that all patients wear masks while waiting for their appointments.  Unfortunately, even the smallest masks are a bit too big for Lemon.

Lemon's appointment began in the patient intake room, where they measured his height and weight.  He continues to cruise along at the 25th percentile for weight, so all seems well there.  The awkward thing about the patient intake room, especially in winter, is that by the time Papa Bear and I had removed our outerwear and stripped Lemon down completely to be weighed, there were about 500 pieces of loose clothing scattered around the room, which we had to then gather up to move to the exam room.

One notable difference between the Madison exam rooms and the Boston ones is the decor.

Other than that, the appointment ran very much like one at the Boston clinic--at least we knew to expect to be in the room for two hours as a parade of new people came through.  We got visited by the doctor, the nurse, the nutritionists, the coordinator for the clinical study, the social worker, and on and on.  By the end of the appointment, Lemon was completely exhausted.  He had just managed to doze off in my arms when the nurse came back in and woke him up to do a throat culture--not exactly the most pleasant way to wake up.  Fortunately, that was the last thing we had to do so after that we bundled him up and put him in the car, where he promptly passed out and was blissfully unaware of being driven home by a novice at rush hour with "wintery mix" falling from the sky.

Another major difference between the Boston clinic and Madison is the approach to enzyme dosing.  Madison seems to pride itself on using the highest doses of enzymes in the country.  Honestly, I think it is a bit strange to pride yourself on being an outlier.  Unless there is very compelling evidence that it is good to give very high enzyme doses, is it really good to be the clinic giving the highest ones?  That is, if the highest doses are really the right thing, why aren't other clinics on the bandwagon already?  I do feel that our doctor in Boston was a bit too conservative with enzyme dosing, and Lemon would outgrow his prescribed dose in between visits.  But here I feel like I'm actually pushing back a little bit against the very high dosing.  While I do want the dose to be high enough that he won't outgrow it between appointments, I just don't see the benefit to giving him way more than he actually needs to digest his food and grow well.

The other interesting enzyme note is that we are going to have to switch brands of enzyme since our new insurance doesn't cover the old brand (Zenpep) unless you've tried the new brand (Creon) and it doesn't work for some reason.  I wish Zenpep were covered since we know it works well for us, but we found out today that we have to at least try Creon.  If it works for us, I suppose that's great, since it will mean a low co-pay and no need for repeated battles with the insurance company, but if it doesn't work, I will be really annoyed that we had to take Lemon off something that was working well just to prove a point with the insurance company.

Other than the ups and downs of our first visit to the new clinic, we've just been continuing to adapt to life in Madison.  We went to a grocery store about a mile from our house that had an extremely impressive produce selection (note the price on this unusual fruit in the lower left).

I also went out for my first run in our new neighborhood to try and develop some new running routes for myself.  It turns out that there is actually a hill in our neighborhood, which is encouraging.  In this view from the hilltop you can see the shopping complex that is about a mile from our new house, in the opposite direction from the grocery store.

It occurs to me that I don't have any pictures of the new house to post yet--maybe by next week it will be less of a disaster and I won't be embarrassed to post pictures of it on the internet!