Week 10: Acceptable risks

Since this week was a relatively uneventful one in Lemon's life, I decided to devote this week's blog post to an issue that has been on my mind a lot since the climb last week, and one that has been generating a lot of controversy in the CF community.  This is the issue of the Cystic Fibrosis Foundation's new policy regarding the attendance of CF patients at Foundation events.  The policy (which you can read in its entirety here) states that only one CF patient, presumably to be chosen by event organizers, is permitted to attend an indoor Foundation-sponsored event.

The rationale for the policy is that CF patients are at risk for lung infections by particular bacteria--bacteria which almost never infect the lungs of non-CF individuals.  Research has made it pretty clear that under at least some circumstances, these bacteria can spread between CF patients, leading to severe illness or even death.  This risk is the reason why CF clinics do not have waiting rooms (where patients would be likely to sit near each other), and why the exam rooms at the clinic are completely sanitized between patients.  Along these same lines, the CF Foundation decided to err on the side of caution and try to eliminate the risk that a CF patient infected with one of these bacteria might attend an event and unintentionally infect another patient who happened to be there.  

Although well intentioned, this policy has been met with resistance from some adult CF patients, who view it as overly cautious and paternalistic.  They also feel that the policy stigmatizes them, and prevents them from interacting and socializing with other patients.  In their view, patients (or their parents) should be allowed to assess the risks of being near other patients, and if they deem that the benefits of attending the event outweigh the risk of contracting a lung infection, they should be able to attend the events.

This policy has generated so much controversy in the community that a pair of opinion pieces on the subject were recently published in the medical journal Chest.  Here, you can read the piece in favor of the policy, written by CF researchers, which summarizes the studies indicating that disease-causing bacteria can be spread between CF patients.  You can then read the companion piece, written by several CF patients with medical or research training, which argues that the actual risk of disease spreading between patients who are merely in the same room is relatively low, and is outweighed by the social benefits to patients who attend events.  They feel that adult patients should be allowed to assess the available information on the risks and benefits, and make their own decisions about whether or not to attend events.

There are several reasons why I firmly support the Foundation's new policy, and why I feel that it is extremely important for other patients and their families to comply with it.  First, while I agree with those who do not support the policy that the risk of an infection spreading from one patient to another at an event is small, I feel that the risk is very real.  Further, the potential consequences of an infection are particularly grim since the bacterial strains spread between CF patients may cause more severe disease than those that patients pick up from the natural environment.  Second, while it might be theoretically possible to minimize the risk by having CF patients at an event stay as far away from each other as possible, the truth of the matter is that since modern treatments for the disease are so good, it is almost impossible to tell who at an event has CF, and who doesn't.  Patients who are concerned about stigmatization are unlikely to consent to wear a badge or ribbon to allow other patients to identify them and steer clear.  Third, although CF patients are routinely tested to determine whether they are currently carrying any harmful bacteria (typically one test every 3 months), the infections can come up at any time and often don't produce symptoms right away.  So, even someone who in good faith believes himself not to be at risk of spreading an infection may be doing just that.  In other words, the risk is real, the potential consequences are dire, and alternate ways of minimizing the risk are inherently limited.  Thus, the CF Foundation's new policy seems to me to be the only logical way forward for the time being.

I certainly acknowledge the importance of social interaction between CF patients--my cousin, who has professional expertise on the topic, recently wrote a piece on the importance of social interaction between young adults with cancer, and analagous arguments can certainly be drawn about the importance of interactions between CF patients for companionship and support.  In this day and age, though, a great deal of that interaction can take place online, where there is no risk of disease transmission.  In a follow-up piece, my cousin notes, correctly in my opinion, that the quality of interaction that patients get from online interactions is fundamentally different than the quality of in person interactions.  There are some aspects of in-person interactions that are hard to replicate online.  Adult patients (or parents of kids with CF) can certainly decide for themselves whether these in-person elements of interaction are worth the risk of contracting a lung infection, and get together any time they choose--just not at a CF Foundation event.

The new policy was on my mind at the Climb for CF last week, since a large printout of the Foundation's policy was clearly on display at the check-in table.  It made me think about how much I looked forward to some day having Lemon be the one CF patient to attend an event, to serve as an inspiration for research and fundraising (because, really, who could resist that face?).  I suppose as a rule-following sort of person, I had imagined that people in the CF community would respect the new policy, regardless of what they personally thought about it.  You can imagine my surprise, then, when over the course of the morning of the climb it became clear to me from overhearing things said by those around me that there were at least four CF patients in attendance.  Three of them were children of less than 10 years old.  Since this was my first Foundation event, I can't say whether this is typical or not.  But, the fact that CF patients other than the designated one attended the event led me to the immediate conclusion that I would never, under any circumstances, bring Lemon to a Foundation event.

I am a firm believer that adults should be able to choose to assume risks for themselves, and to some degree, for their children--provided that by assuming those risks, they do not place at risk those who, by their actions, are trying to follow the rules and avoid risk.  Adults can choose to drink alcohol, which carries some inherent risk--but they cannot then choose to get behind the wheel of a car, because such behavior puts at risk everyone around the drunk person, including those who are following all the rules of the road.  Similarly, I feel that adult CF patients can chose to get together at private gatherings and risk contracting lung infections, but by choosing to disregard the Foundation's stated policy, they are putting at risk someone (namely the designated CF patient at the event) who is following the rules and did not consent to the risk to which s/he is now being exposed.

So, what do you all think?  Is the Foundation's policy a good idea, or not?  Would you bring your child to a Foundation event?  Do the benefits outweigh the risks?  Let your voice be heard in the comments area!

Here's a little movie of Lemon demonstrating his new leg strength and coordination (as well as his vocalizing!) to watch while you think about what to say.

Week 9: Excelsior

What a fantastic week this has been.  It began with a very successful test run of our child care arrangements.  Nona came over several mornings this week and watched Lemon while I worked from home.  They get along very well, and seem to really enjoy each other's company.  I feel confident enough about leaving Lemon and Nona unsupervised that I'm actually going to head into the office a couple of times this coming week for a few hours each time.  Although Lemon is getting better about taking a bottle, he still really only eats a snack-sized meal each time, so I don't want to leave him for too long--a few hours at a time to start.

On Friday, we took Lemon for his two-month check up.  He weighed in at an impressive 11lb 6oz, continuing to gain weight at 1.5 times the normal rate.  He's closing in on the 50th percentile for weight, or if you believe the Android version of the baby app, he's already there!  He's also working on some new neurological developments, like the all-important social smile!

The most significant event of this week was the Climb for CF.  On Sunday morning, I fed Lemon and got ready for our longest separation since he was born--about 5 hours all told.  I hopped on the T and headed downtown to One International Place, a 46 story building in downtown Boston.

There, I found the lobby fully decorated for the climb, and tons of other climbers getting ready to go.  I was particularly amused by the presence of what I can only think to call "stair geeks"--people whose athletic passion is racing up the stairs in tall buildings.  There seems to be a group of these people, four of whom were present at this event, who travel around the country (and the world) to participate in stair climbs.  One guy even had fancy calf-support socks and gloves.  These guys did two, three, or even four repeats of the building.  Since I'm just getting my athletic act back together, I was perfectly happy to just climb the building once.

I signed in, picked up my number and T-shirt, and then posed for a pre-climb photo.  And yes, just for the record, I was wearing a garment on the lower half of my body.

I thought that having spent my athletic career to date in distance running and cycling, I'd already identified the least spectator-friendly sports to participate in.  However, it turns out that stair climbing offers even less visual entertainment for the onlookers.  This photo shows the start, where climbers took off one at a time, separated by 30 seconds.  That view is also totally representative of
the middle and end of the event, too.  Other than the lack of visual interest, the climb went quite smoothly.  I took it at a very conservative pace and arrived at the top feeling like I'd gotten a good workout, but not totally wrecked.  Even at my moderate pace, I placed a respectable 5th in my age group.  And, the views of Boston from the top were quite marvelous.

More important than the feeling of accomplishment at having completed the climb was the feeling of accomplishment that you all facilitated through your generous support--together we raised nearly $7500 for CF research, five times my original fundraising goal.  Lemon, Papa Bear and I are all incredibly grateful to all of you.  I hope in the future, when we have a little more time to get organized, that many of you will join me as part of "Team Lemon" at a CF fundraising event.  It's a great community with wonderful spirit, and it will be so inspiring to have you there with me! 

Week 8: Happy anni-bir-sary

The second week of October is always traditionally a big one in our household, since it contains both my birthday (the 8th) and our wedding anniversary (the 10th).  But, this year, I basically forgot about both events until just a few days beforehand. Somehow, they just don't seem quite as important anymore.  I used to find it funny that my mother could never remember her own birthday or how old she was.  Suddenly, it's no longer funny--it's my reality now, too.  And what did I do on my birthday? I don't really remember, other than that Lemon looked particularly cute first thing in the morning, and that I went to CVS and picked up his new prescription for three months worth of enzymes at the new, higher dose.

Luckily for me, Papa Bear didn't forget the events of the week and made time in his busy schedule to get me some beautiful flowers, fancy pears from Harry and David, and bath salts (the kind you actually put in the bath tub, not to be confused with the kind that I learned about last time I looked up bath salts on Google).  In keeping with household tradition, he also got me one gift that benefits him directly, in this case a series of magazines with recipes from the wonderful Scratch Bakery in South Portland, ME.  I'm particularly eager to try the recipe for their incredible cinnamon rolls.  And, now I have a whole new excuse to make them--practice for Lemon's future high-calorie diet.

This week also marked my last week of maternity leave, and I have spent a lot of time wrestling with the idea of returning to work.  On the one hand, I feel like I always intended to go back to work full time, and I've invested so much of my life in getting the training and experience to advance an ambitious career in a field that I love.  On the other hand, I have a fragile baby who needs my love and attention--and currently needs to be fed every two hours.  Regardless of the CF diagnosis, eight weeks just seems too young for a baby to be left with someone else.  Luckily for me, I have a very sympathetic boss (whose own son was diagnosed with Type 1 Diabetes within weeks of his birth) who is letting me work from home for the next two weeks while we give our child care arrangements a dry run.  Doubly luckily for me, Nona is going to step in and watch Lemon several mornings a week, so even when he isn't with me, he will be with someone who really loves him.  That, and the fact that Papa Bear, Lemon, and I are all on my health insurance, is basically the only thing getting me back into gainful employment just now.

In addition to all the observances of "anni-bir-sary" week, this weekend we were finally able to introduce Lemon to some more very important relatives.  My father (Opa) is the eldest of four brothers. Throughout my childhood, the four brothers have been cornerstones of the family and wonderful fathers to a total of 13 children.  Every occasion on that side of the family is full of memories if these four guys setting an example for me and all my cousins about the importance of tight  family bonds and a working knowledge of the rules of contract bridge.  So, it was wonderful to at last introduce Lemon to two of my three paternal uncles (and two fantastic aunts, too!).  I hope that even as the family spreads out geographically, Lemon will come to know and love all the aunts, uncles, and cousins who have been so dear to me my entire life.  Maybe he'll even give his Opa a thrill by taking a seat at the bridge table some day.

In fitness news, this week saw my first 5 mile run since Lemon was born.  I'm still slower than I was pre-pregnancy, but can slowly feel my old powers returning.  During the run, Lemon got a taste of the occupational hazards that face him as my training partner.  Our jogging stroller occasionally picks up a leaf in the front wheel and flings it straight back at Lemon's head!  


I'm glad that my fitness is slowly getting back on track, since the CF climb (46 flights up in one of Boston's tallest buildings) is just a week away.  I cannot thank all of you enough for your amazingly generous contributions in Lemon's honor.  I am so moved by your support, and by the knowledge that at only 8 weeks old, Lemon has already made a big difference in the world.  Last week, I set what I thought was an ambitious goal of raising $1500.  In just one week, I surpassed that goal three times over, raising $4665 so far.  If you haven't contributed yet, there is still time, and your donation will help fund research that can improve the quality and length of Lemon's life.  Please click here to access my fundraising page and make your donation by this coming Saturday, October 19--no donation is too small!  I've set a new goal of $5000 and with your help I think this is within reach.

Biomedical research has been at the center of my life for a decade and a half, but has never been closer to my heart than it is now.  The more I learn about what's going on in the CF field, the more confident I am that amazing new treatments are just around the corner.  The fact of the matter is that the research to develop these treatments costs money--a lot of money--and in this day and age, with fractious environment in Washington, we cannot rely on public money alone to support it.  So, please join Jen H., Chris, Sheldon, Ruth, Jared, Lauren, Jon, Jen M., Shuyu, Erik, Naomi, Linn, Dave W., Jason, Jeff, Carol M., Becca, Rene, Lenny, Kathy, Eric, Joe, Dave H., Dale, Mike, Doug, Gail, Rich, Susan, Sarah, Angela, Dudley, Carol L., David G., David S., Betty, Steve, Shoshana, Dov, Edith, and Richard by donating today.  Your donation will help ensure that some day, "CF" just stands for "cure found."

Week 7: Liquid, fragile, potentially hazardous

This week we had our third visit to the CF clinic at Children's.  We all felt like we are finally getting the hang of these visits, and this one felt much less stressful than the first two.  As someone who has been very healthy her whole life, I think I have that not-uncommon fear/loathing of hospitals.  But, for Lemon's sake, I really need to put that out of my mind, since regular hospital visits will always be a part of his life.  Since babies are so sensitive to the emotional state of their parents, it's very important for Papa Bear and me to remain calm during these visits to reassure Lemon that all is well.  

The first exciting thing that happened on this visit was Lemon's weigh-in.  He hadn't been weighed in two weeks, so although we could tell that he'd grown, we didn't know how much.  Then, we put him on the scale--10 pounds!  He has continued to grow at roughly 1.5 times the normal infant growth rate, and is rapidly closing on the 50th percentile for his age.  He's so big, in fact, that we now have to double his dosage of enzymes, from one pill per feeding to two.  Everyone was really thrilled with his progress, including Lemon himself!

We also turned in our first set of paperwork for Lemon's clinical study, and got our new handouts for October.  As part of the study, the researchers need a stool sample at every visit.  On our past visits, Lemon has been pretty cooperative about producing a nice fresh one sometime during the appointment, but lately he's started going through fewer diapers per day (yay!), and as our visit was drawing to a close, there was still no sample.  So, the study coordinator gave us a kit for sending in a sample (ie a pre-paid envelope to mail a dirty diaper via the United States Postal Service).  I really had to wonder to myself how I would respond to the earnest question of the postal clerk when I went to mail the thing in--"Does this package contain anything liquid, fragile, or potentially hazardous?"  "Ummm...no...not exactly..."

Fortunately for the USPS, our stay at the CF clinic was extended by Lemon's first chest X-ray, during which he did manage to produce a nice sample for the clinical study. The purpose of this X-ray was just to record a baseline measurement so that his doctors have something to compare with in the future.  I once again got to play the role of physician's assistant/baby immobilizer.  I put on a heavy lead smock, and then held Lemon still with his arms above his head while the technician took two X-rays, one from the top down and one from the side.  Lemon took the whole thing really well and didn't protest at all.  I was reminded how funny a baby's proportions are--with his arms held over his head, Lemon's elbows are about level with his ears, and his hands can just barely touch each other over the top of his head. 

Finally, this week I signed up for my first fundraising event for CF: the third annual Boston CF Climb, which will take place on October 20 at One International Place near the Boston Waterfront.  There, I will join lots of CF parents and other supporters in climbing the stairs all the way up to the top floor of the 46-story building to raise money and awareness for CF.  You can view my fundraising page by clicking HERE!  I've set the relatively ambitious goal of raising $1500 in just two weeks.  Please help me (and Lemon) by making a donation today.  As always, thanks to all of you for your support! 

Week 6: Before and After

Week 6 was the first week of Lemon's life during which he saw no doctors.  This brief respite from the medical profession left us free to enjoy family, friends, and developmental milestones.  We finished up our trip to New York with a birthday party for Great Grandma Virginia, where at last I managed to capture a "four generations" picture with Great Grandma, Grandma, Papa Bear, and Lemon.



I continue to be really touched by how much Lemon means to all of his grandparents, and the effect may even be magnified with Great Grandma.  While we were there, she was reminiscing about how she is the youngest of 11 siblings, and the only one still living.  She wondered aloud why it was that she had hung around so long, and then turned to Lemon and said, "Well, maybe it was so that I could meet you!"

.  

After our last visit with Great Grandma, we caught the train back to Boston.  The feeling of relief at arriving home was profound.  Although overall our trip went very smoothly, Lemon's CF doctors had warned us before we left that, because he is so young, any kind of illness would likely result in hospitalization and lots of terrible-sounding tests.  While it is certainly true that I viewed the New York subway as a hotbed of contagion before this trip, my level of paranoia was orders of magnitude higher with Lemon around.  Every time I heard a cough or sniffle, I immediately scanned the car to identify the source.  Once the source was identified, I watched the person who made the offending sound to try and determine if this was a cough or sniffle caused by illness, or just a innocuous clearing of the throat or nasal passages type of thing.  We also went through an entire bottle of Purell.  Although there's no reason to think that the MBTA or Boston generally is more free of disease than New York, it certainly feels that way to me, so I was very glad to have Lemon back on his home turf.  No more rides on the A train until he's a few months older!

 I feel like Lemon's physical and cognitive development really took off this week (merely correlated with the lack of doctor visits--I make no claims about causality!).  He is much more interested in the world around him, and will track people and objects with his eyes.  He's also beginning to use his limbs in a much more purposeful way, even if his coordination isn't quite there yet.  His musical development also seems to have picked up.  In my first ever cellphone video, I captured this little clip of Lemon appearing to stomp his foot in time with his music.  According to Burton White (author of the indispensable classic The First Three Years of Life), Lemon is now a "Phase 2" baby (phase 2 being 6-14 weeks of age), and it's easy to see from watching him why White chose to draw the line between stages there.  Lemon is really substantively different than he was last week.  

Maybe because of these dramatic developmental changes, and certainly in part due to his CF diagnosis, I haven't felt even remotely ready to leave him and go back to work, even though my maternity leave is officially over.  Luckily I have some vacation time banked that will give me a few more weeks at home full time with him.  I do have a very strong incentive to go back to work at least part time, though--our whole family is on my health insurance, and we certainly need to keep that going!  We'll see how I feel about returning at 8 weeks.  I'm starting to be really envious of moms in European countries who get months (or even years) of maternity leave!

With the little free time I've managed to carve out for myself, I've continued to make progress on my fitness with the hopes of returning to athletic events sometime in the near future.  I can now run 5 km at a time, and am continuing to build on distance and speed.  I'm inspired by my cousin Miki, who had a baby two days after Lemon was born, and is already planning on doing a 10k in October.  In fact, she's using her 10K to raise money for CF research in Lemon's honor--click here to support her!

I'm sure many of you are wondering when I'm planning to return to cycling.  I'd been wondering that myself, and a few weeks ago I even went so far as to clean up one of my bikes and take it for a spin up and down the block.  It felt great, and I was eager to get started on some longer rides again.  Then I found out that one of my dearest friends was in a terrible accident--ironically on that very same day.  She suffered some very serious injuries and is facing a long, slow recovery.  That news really shook me up, and made me rethink a rapid return to cycling.  I still long to return to the open roads, but I also feel like I need to wait until Lemon is a little older.  I just can't afford the risks right now.

My friend who suffered this accident wrote a post on her blog about "before and after" moments, which was the inspiration for my post this week.  Obviously my friend's current accident represents one such moment for her--and by extension, for me as well.  It also made me reflect on the other "before and after" moments that I've experienced recently, and it made me realize how the moment of Lemon's birth is so much more significant to me that the moment of his diagnosis with CF.  I can remember both very vividly, but I feel like only one of them (his birth) really bisects my life into a true "before" and "after."  CF will always be a part of his life, and by consequence, of my life.  But the fact that he is here and has a life ahead of him is really what matters.

Week 5: Live from New York!

Lemon began this week with a visit to the regular pediatrician, where we found out that he gained a further 11 ounces in the last week, bringing him up to 8lb 11oz, and either the 19th or 23rd percentile in weight, depending on whether you believe the iOS or Android version of the baby tracking app that Papa Bear and I use.  His pediatrician thinks he may reach the 50th percentile for weight by his next check-up (mid October) which is great news.  His next weigh in will be October 2 at his visit to the CF clinic, so we're hoping that he continues to make good progress.

We were glad to hear that he was doing so well and had a clean bill of health, because we had big plans in store for Week 5: Lemon's first inter-state voyage.  Way back when I was still pregnant, the idea of traveling to New York City with a one month old infant seemed entirely rational.  I mean, infants are small and spend most of their time sleeping, right?  Plus, they only eat one thing, which I'm making in-house, so to speak.   And, we had a particularly good incentive to visit New York: to introduce Lemon to his Great Grandma Virginia, who turns 89 years old today.  Since her health is a little fragile, we didn't want to delay the visit.  And, Lemon is so cute at his current size.

So, we booked train tickets, made reservations at a little bed and breakfast (really more of a vacation apartment), and then didn't give the trip any further thought until late last week when we realized, "Holy cow, we're going to New York with a newborn.  On Thursday."

I'd read on a travel blog once that the first time you travel with a baby, it feels like you're moving because of the amount of stuff you have to take, and this is certainly true. 

What may be difficult to appreciate from the photo is that we packed about 150% as much stuff for 5 nights in NYC as we did for 2.5 weeks in Russia last summer, back when there were just two of us.  Lemon got one suitcase, while Papa Bear and I shared the other.  A subway ride, a train ride, and another subway ride later, we arrived at our tiny (really tiny) apartment in Greenwich Village.   The trip itself was quite smooth and Lemon slept for large portions of it.  We fed him and changed his diaper twice on the train which was a little awkward and undignified but totally manageable.

One little issue we hadn't fully resolved until the day before we left: where was Lemon going to sleep?  Our accommodations did not come with a crib.  Fortuitously, just before our departure, I'd exchanged email with Lemon's doctor about sleep positions for CF babies.  We'd noticed that Lemon has a hard time keeping his throat clear while lying flat on his back (the recommended sleep position for infants).  She suggested that we get an inclined sleeper for him that would support him at a 45 degree angle with his head up to help prevent reflux and facilitate swallowing.  So, I went online amd ordered one to be delivered to the Babies R Us in Union Square where we picked it up when we arrived.   How people raised children before the Internet is a great mystery to me.  In any case, the incline sleeper is really fantastic.  Lemon sleeps in it more soundly than anything else we've tried so far.  He loves it so much, in fact, that we're leaving this one in New York with his grandparents for future visits and buying a second one for our house.

In New York, we've been on a busy schedule of visits with friends and family.  First, we met up with Grandma and Grandpa for lunch at one of their favorite restaurants, Olive's in the W Hotel in Union Square.  The hotel has a nice lobby, so we hung out there for a while afterwards to give Grandma and Grandpa some more quality time with Lemon.

We also met up with my old grad school friend (now known as Professor Nick) and had a delicious breakfast near where we're staying.

Finally, we made the epic journey out to the far reaches of Queens to see Great Grandma Virginia.  Of course, the A train was undergoing repairs so we had to take a shuttle bus for the last third of the journey, just to make sure that Lemon had the complete New York public transit experience.  It was worth the journey, though--Virginia was really delighted with Lemon (who wouldn't be?) and it was a great experience to see two people, one of whom is three orders of magnitude older than the other, holding hands--in this picture, Lemon is one month old and Virginia is 1068 months old.  We wish her a very happy birthday and another year of health and happiness.  We hope to be celebrating the big 90 (and Lemon's first birthday) with her next year.

Week 4: Another epic visit to the CF clinic, and a few more relatives.

Week 4 saw another epic visit to the CF center at Children's Hospital.  We've had two appointments there now, and it seems like no matter what they say when you set up the appointment, you should plan on being in the exam room for two hours.  The appointments are exhausting for Lemon (and myself, Papa Bear, and Nona), but we do feel like we're getting the best care in the world so we can't complain too much.  As Nona correctly pointed out, you just have to set aside the whole day for the appointment, and if you go in with the expectation that it will take the whole day, it seems a little less bad.

The appointments begin with hooking Lemon up to a pulse oximeter to measure his heart rate and blood oxygen level.  Since he is still so tiny, they connect the sensor to his little foot.

Once that's done, they measure his blood pressure.  Obviously, he finds the blood pressure cuff much more objectionable than the pulse oximeter sensor for whatever reason.

 

After the blood pressure and pulse oximeter measurements, we come to the most important part--the weigh-in.  As I mentioned last week, it is critical for CF patients to gain and maintain body weight since body weight correlates with lung function.  After starting on the enzymes, Lemon managed to gain 10 ounces in 4 days, so we were curious to see whether his growth had tapered to a more normal rate.  According to the doctor, infants usually gain 20-30 grams (approximately 1 ounce) per day.  So, everyone was totally amazed when we put Lemon on the scale to find out that he had gained an entire pound (16 oz) in only a week, for a growth rate of about 60 grams per day.  He is clearly eager to make up for lost time.  This also explains why I've been feeling a little drained these last few days!

Since Papa Bear and I are big science dorks, we of course had to make a figure that illustrates Lemon's prodigious growth (see below).  You can see that after he was born, he lost a bit of weight but then gained it back, which is totally normal for a newborn.  What wasn't normal, however, was the fact that he didn't gain any more weight after getting back up to his birth weight.  After he was diagnosed and started the enzyme supplements, though--well, the graph speaks for itself.  He still hasn't quite broken the 25th percentile for weight for his age, and ideally we'd like to see him get up to the 50th percentile, but he's making great progress.  We're also really glad that he's been able to make this much progress on breast milk alone, so we haven't had to supplement him with formula yet.

The doctors also listened to his chest, which still sounds completely clear.  I found their method for listening to an infant's chest from the back particularly charming--the attending physician held him over her shoulder while the fellow put the stethoscope to his back.

Lemon also had a sweat test at this visit.  The sweat test allows the doctors to measure the amount of chloride in Lemon's sweat and is considered the definitive diagnostic test for CF.  Let's just say Lemon did not like that test one bit.  As the technologist was getting him connected to the electrodes for the first step of the test, he cried until his whole head turned purple.  While this was going on, the technologist was also asking me all sorts of questions.  I think it is hardwired into the maternal brain for a mother to be completely unable to process any spoken language at all when her baby is crying.  I was really struggling to come up with answers to the questions, which were pretty simple--I think I would have had trouble coming up with the correct spelling of my last name under those circumstances had I been asked!  In any case, the sweat test confirmed Lemon's diagnosis of CF, which is no surprise given the genetics.  On hot days, we're supposed to supplement him with a little bit of table salt to make up for the extra salt that he's secreting in his sweat.

On this visit, we enrolled Lemon in his very first clinical study.  Being researchers ourselves, Papa Bear and I are very committed to doing as much as we can to support clinical studies to advance care for CF patients.  This first study is an observational one--the study is looking at what type of feeding (breast milk, formula, or both) leads to the best outcomes for CF infants.  All we have to do is keep a little diary about what Lemon eats for his first two years of life, and that will be correlated with whatever clinical data is gathered at his regular check-ups.  We're glad to do our part, and happy that we can start while Lemon is so young.

In non-CF news, it seems that no week of Lemon's life is complete without meeting a few more friends and relatives.  This week, he got to meet his great-aunt Donna and great-uncle Joel.  He really liked them--he fell sound asleep in Donna's arms right away.  And, Joel (who is a musician) gave him his first collection of music CD's, which he really seems to love.  Joel says that musical ability skips a generation--namely me--so he and Nona have high hopes for Lemon's future musical development.

Finally, to our great relief, our cats seem to be growing more relaxed around the new baby.  Hopefully they'll enjoy the few months of relative calm ahead before Lemon becomes mobile...