Monday, March 31, 2014

Week 32: Smart Patients

This week was another relatively quiet one in Lemon's life.  We went to music class again, and this time Nona came with us to observe and take pictures (with her iPad--she's a very modern grandparent).  As usual Lemon got a huge kick out of the class, and then fell deeply asleep in the car.

Little did he know that the drive after class was longer than usual since I was taking him straight to the pediatrician's office for his flu booster.  Not exactly the most fun way to wake up, but he handled it pretty well.

The weather here in Madison is finally warming up, and we took advantage of the warm weather this weekend to bring Lemon to a local park for the first time.  He was appropriately cautious about the swing at first,

but quickly realized that it is THE BEST THING EVER.

We may have a serious swinging addict on our hands by the time summer is over.

The other thing I worked on quite a bit this week was to help launch a new online CF community.  This community is based on a platform called Smart Patients (www,  In some ways, it's similar to a social networking platform like Facebook or Twitter, but it is designed specifically for patients and their caregivers to have longer, in depth, and more private conversations about health-related topics.  Another great feature, especially for diseases with a small number of patients (like CF) is that the platform allows for cross-disease learning with other patient groups on the site, like patients with different types of cancers and inflammatory bowel disease.  Since conversations are "tagged" by keywords associated with the topic, it's easy to look through all of the active and archived conversations on the site that mention a particular topic.  There are actually a lot of common issues that patients with chronic conditions must deal with regardless of their specific diagnosis (obtaining prescriptions, dealing with performing fairly complex care at home, interacting with friends and relatives about issues involving their disease, getting kids to stick to special diets and treatment regimens).  By interacting with patients with other chronic conditions, we (the CF community) hope to learn from the experiences of others, and also contribute our own experiences to the knowledge base.

If you are a CF patient or caregiver, and are interested in joining the community, please use this link:

We're eager to have more people join our conversations!

Monday, March 24, 2014

Week 31: Choosing Wisely

After the whirlwind that was last week, it was nice to have a relatively quiet week at home.  We spent a lot of time doing chest PT to help Lemon get over his cold.  He's most of the way there now, and at our clinic visit on Friday the doctor said that he thought Lemon was close enough to clearing it on his own that he wouldn't prescribe prophylactic antibiotics (to prevent a bacterial infection from taking root in the extra mucus from the cold).  There isn't a whole lot of evidence that the prophylaxis does a lot in this case anyhow, so I was OK with skipping it for the time being.  Since Friday Lemon has mostly kicked the cold, so I think it was the right call.  Heck, I haven't even fully kicked the cold and I don't have any other health issues going on.  I will be glad when both Lemon and I are finally free of it though.  Then we can focus on the more important matters at hand, like teething, which is in full swing now.  Lemon has a second tooth that has cut through on the lower jaw, and it looks like the two upper ones should be with us soon.

Since it was a relatively quiet week on the home front, I thought I would use this week's post to introduce a couple of topics that caught my attention at the weekly "Grand Rounds" meetings at the hospital where I work.  Both of these have to do with the idea of patients and doctors working together to make decisions about care options.  This is a topic I really never thought about until Lemon was born.  Until that point, my limited experience with the medical profession was that if you thought something was wrong, you went to the doctor, the doctor told you what was going on, recommended a course of action, you did it, and that was that.  It turns out that in almost every doctor-patient interaction, there are a lot of decisions to be made, and in many cases the way forward isn't obvious.  Should another test be run?  Should a one treatment be favored over another?  Should something be treated immediately, or given some amount of time to resolve on its own?  When you are in generally good health, and have generally uncomplicated medical problems, these things don't tend to come up much.  But, when you have a complicated disease like CF, they come up all the time, at pretty much every doctor's visit.

The first talk I heard brought up a group called Informed Medical Decisions, currently conducting research on the best ways to provide patients with information to allow them to participate in decision-making along with their care team (there is a video here if you're interested).  The second talk I heard was about another organization, called Choosing Wisely.  In a way, this organization is the mirror image of Informed Medical Decisions.  Choosing Wisely is encouraging doctors to take an active role in reducing medical expenditures by reducing the use of tests and treatments that are unlikely to be productive.  They are doing this by having doctors (in the form of professional organizations like the American Academy of Pediatrics) come up with lists of procedures that should not be the rote standard of care.  The idea is that this will make it easier for individual practitioners to follow the age-old guidelines of "don't just do something, stand there" in cases where it's appropriate.  Along the lines of helping patients make informed decisions, Choosing Wisely has also partnered with Consumer Reports Health to publish information sheets for patients and their caregivers on a variety of common medical situations, like lower back pain.

As someone who now has to make a lot of medical decisions, I think it would be hugely helpful to have had someone else go through the research literature on each issue that we're facing, summarize the best studies, and give that to us in a neat little package to guide us.  Of course, now that I've begun delving into the medical literature myself, I can see that there are some questions that seem to be pretty clearly resolved, while others are still murky.  But, even in the cases where the possible benefits of a treatment are murky, the decision aide could provide clear information on costs (I know, the very idea is un-American) or risks associated with the procedure.  Hopefully some day, resources like these will be available to members of the CF community.  Right now, I feel like we're all flying by the seats of our pants.

I did have an interaction with Lemon's doctor at this most recent visit that reminded me very much of Choosing Wisely, though.  Like many kids with CF, Lemon's vitamin D level was low when it was first tested back in Boston.  So, it was on his schedule for this visit to have blood drawn for a follow-up test, to see if the extra Vitamin D supplements we've been giving him have boosted the level up to where it should be.  I wasn't particularly eager to have the test, since I was pretty sure that even if they found the level was low again, the recommended course of action would be to test again in 3 months and see how things stood.  So, I was very happy when Lemon's doctor said, "Let's just skip the Vitamin D test.  Because I'll tell you what will happen--we'll test it and it will be low again.  So let's wait until the poor kid has actually had a chance to be exposed to the sun, and then test it."  And, lucky for us, it is forecast to hit 60F this coming weekend, so Lemon might actually get exposed to that great glowing orb in the sky for a sustained period.  The last time that happened was literally half a lifetime ago, from his perspective!

Monday, March 17, 2014

Week 30: I'm not _that_ mom!

As you loyal readers know, we recently relocated from Boston to Madison.  We've now been here just over two months, and aside from our coworkers and Nona, we really don't know a soul out here.  With the move and a few house related projects behind us, I decided that it was time to venture out into the community to meet some of our fellow citizens in the hope of making some new friends. After poking around online for something to do with a baby that actually took place at a time that Lemon and I could go, I finally found a little music class for babies and their caregivers that takes place in a church basement just down the street from our house.  It starts at 12:45 on Wednesdays (when I'm in the office until 12) so if I walk as fast as I can from my office to our parking spot, drive home, leave the garage open and the engine running, have the nanny get Lemon all ready, and then pick him up and head right out the door, we can more or less make it on time.  Who needs lunch, anyhow?

I was a little nervous about signing Lemon up for the class, since he and his contemporaries are at the stage where everything they touch goes right into their (disease filled) mouths.  But, everyone in the CF community says not to raise your child in a bubble, and I fully intend to heed that advice even if it makes our nanny nervous, which it does.  So, on Wednesday of this week, I made sure that there were plenty of disinfecting wipes in the diaper bag, and went off to music class. 

The class was really cute, and full of other women who are about my age with babies about Lemon's age.  So, a totally perfect venue to make some new friends.  Except that I'm that psycho first time mom who is wiping down every toy before allowing her precious prince to touch it, and defending the sanitized toys from the other babies when they try to grab them.  I want to tell them all that I am so NOT this person, this hygiene-obsessed, over-protective helicopter parent.  I want to tell them about the time when I was bike touring and I used a stick to spread peanut butter when I was hungry and couldn't find any utensils, because that is who I really am.  I want to tell them this as I dip all of the toys around me in bleach, and then autoclave them.  It's a conundrum.  Because if I try to tell them that I am really not like this, I will have to tell them why I am acting like someone I'm not.  And I don't want to begin a friendship with someone by having her feel sorry for me, or feel sorry for Lemon, because that is not who we are and what we are about.  And while I was having this massive internal dialog, Lemon tried really hard to eat a paper bag.

 I did sign us up for the rest of the session of the music class, which runs through the end of May, so I have many more chances to thoroughly impress my fellow moms.  And, naturally, in spite of all my psychosis, Lemon and I both got a cold this week.  Whether it actually had anything to do with the music class or not is impossible to tell.  All I can really say is that we're doing chest PT 3 times a day and ordering more sanitizing wipes.  And maybe a portable autoclave.

This weekend we went on our first big family road trip, to scenic Elgin, IL.  Papa Bear's lab technician was really somewhat horrified to hear that we were going on a get-away to her childhood hometown, but we had good reason.  Some of my dearest friends, who now live in Hawaii, were visiting family there.  And here in the midwest, 100 miles away is basically next door, so of course we packed everything up (and I do mean everything in the literal sense) and drove down to Elgin.

There, we went to an alpaca farm owned by our friends' relatives.  Lemon thought that the alpacas were the weirdest looking cats he'd ever seen.

We had an absolutely wonderful time visiting with everyone.  It was great fun to introduce them all to Lemon, who immediately (and correctly) identified them as his people. 

Papa Bear also got a taste of what our lives will be like in 5 years, when Lemon will want to play the same slightly pointless games over and over again while talking smack about his opponents using phrases like "purple-durple."

While I'm still intent on making some new friends in Madison some day, it is hard to imagine ever meeting such great friends as these--friends who you see far too infrequently, but that as soon as you're in the same room, it's as though you saw each other just the previous day, and not a million years ago.  It is reassuring that they still seem to think that I'm the same person, even though pretty much everything about my life has changed since I last saw them. 


Monday, March 10, 2014

Week 29: Teething (and coughing)

Lemon hit an important milestone this week--he got his first tooth!  And no, I don't have a picture of it yet.  Trust me, taking a photograph while holding an infant still with one hand and holding his mouth open with the other hand is not as easy as it sounds.  If you have any doubts, I recommend that you try it with a similarly sized and similarly cooperative creature, such as housecat.

The other thing we've noticed this week is that Lemon is definitely coughing more.  I wouldn't say that he has "a" cough, in that it's not especially regular, and he doesn't cough in his sleep.  But he definitely coughs when he wakes up, and then occasionally throughout the day in a way that he didn't use to.  It's not a scary-sounding cough, though, and he's in great spirits and not acting sick or feverish, so I assume (hope?) that everything is OK.  We have an appointment at the clinic next Friday so we'll see what they say.  At the moment I think this may just be part of growing up.  Babies don't have very thick secretions in the lung (or so we were told when Lemon was diagnosed) and they get thicker with age.  So, maybe, like getting his first tooth, this is just a normal part of a CF baby getting older.  Still, it's troubling, because for most of his life to date we've been able to put CF out of our minds most of the time, and now every time he coughs, I immediately think, "Oh no, CF, poor Lemon, we need a cure faster!"

In the time when I'm not worrying about CF, which is still the majority of the time, Lemon is having lots of fun practicing new skills, and bringing out Papa Bear's creative side.

Look at this cool tower!

(Lemon thinking, "Oh man, if only I could move!  Maybe if I lean waaaay forward...")


 And so forth.  Hours of innocent merriment.

Another great thing about this week is that we didn't explain the concept of daylight savings time to Lemon.  So, although he thinks he's still waking up at 5, it's actually 6!  I'm sure after a few days this will feel like an improvement, although at the moment it still feels like 5 to me, too.

One other funny side note this week--I have achieved a new internet milestone, in that someone that I don't even known tweeted at me.  This has never happened to me before, so, yes, I will admit that it was kind of fun.  And, the news this person shared with me is that this blog (yes, the one you are reading right now) is one of the top 35 CF blogs on the internet (according to someone).  It's good to know that the reach of the blog is expanding, but mainly I'm just honored to be on the same page as everyone else on the list--we are all in this fight together, and they are all fighting so hard and finding the time to share their experiences with the world.  It's inspiring (if scary) reading.

Monday, March 3, 2014

Week 28: Normal kid stuff

One of the biggest challenges for me as a new mom is to know when something that Lemon does is "normal" or whether some CF-related process is going on.  Every poop, every cough, every sneeze, I look at Lemon and wonder if this is what all babies do.  I suppose every new mom wonders these things, but with Lemon we really do have something pretty serious running in the background at all times.  Everyone has advised us to intervene really aggressively with everything at this age, to give Lemon the best possible start.  But, knowing when to intervene aggressively and when to just roll along can be challenging. 

On Friday I took Lemon for his last Synagis shot, and when he was weighed it turned out that he'd actually lost about 4 ounces since his pediatrician's appointment 10 days prior.  I am nearly certain this is due to the fact that for a week after the pediatrician visit, he wasn't feeling well from all the shots and didn't eat much.  So, oddly, I'm much less upset about the fact that he lost weight than I was before when he merely failed to gain weight, when I was sure that CF was the culprit.  This time, I have convinced myself that this little dip is due to "normal" stuff, so somehow it's much less scary.  I have also seen Lemon bounce back from these little setbacks before, so I'm more confident in his ability to catch back up now that he's eating normally again.

Lemon has continued to make great progress on his milestones.  He can sit unsupported for a really long time now, and is quite stable.  He hardly ever tips over accidentally anymore, and has grown more confident about lunging for things that are just out of his reach.  He is also extremely close to being able to roll over, something he and I practice together every day.  He actually did do it once by himself today, but despite many efforts, I could not get him to do it again with the camera rolling, so this attempt is the best I have to show for it.  Maybe next week you'll get to see the full 180.

Today is Papa Bear's birthday, so Lemon and I (OK, mostly I) baked him a cake and decorated it with a picture of one of the molecules that he's working with in the lab.  For those of you who care about these things, red is oxygen, yellow is nitrogen and blue is chlorine.  We brought the cake into work to share with our new coworkers who were duly impressed with the decoration.

Then after work we came home to celebrate as a family, by which I mean put Lemon to bed and then wonder why we felt like it was midnight when it was actually 6:39pm.   It's hard to believe the rest of the week is still ahead of us.  On the plus side, on Friday it is supposed to get above freezing for the third time since we moved to Wisconsin!