Week 105: We are two

Because every major family event must be marked by some sort of travel difficulty, the only cloud in the sky as we approached Lemon's second birthday was the absence of Grandma Carol and Grandpa Dudley, who had planned to join us from New York for the celebration (and to meet Lime for the first time!).  Unfortunately, Great Grandma Virginia was not feeling well and they had to cancel their trip at the last minute.  It's been altogether too long since we've seen them, so hopefully we will find a way to all wind up in the same place soon.

Without Grandma and Grandpa, Lemon's birthday was a pretty low-key affair.  I made a big chocolate cake, and also a special birthday lunch for Nona, whose birthday is one day after Lemon's.

Papa Bear came home early from work, and the five of us had a nice little party at home. 

Papa Bear and Lemon had fun opening one of his presents---some more wooden train tracks to expand the set he inherited from Uncle Jared. 

The day after Lemon's actual birthday was his two year checkup.  We were relieved to learn that in spite of his new stubbornness about eating, he's still keeping up with his weight gain (how???) and is now over 26lb.  He's gotten much taller in recent months, too.  Amazingly, he didn't need any shots and doesn't need to see the regular pediatrician again until he's three!  Of course, we'll see the CF clinic many times before then, but it definitely feels like a milestone to be going a year between regular checkups.  But, don't worry, Lime has the same pediatrician as Lemon and he will need to go at 2, 6, 12, 18, and 24 months so the doctor won't forget who we are.





In honor of Lemon's second birthday, we tried for our first family portrait as a foursome.  It wasn't exactly a success, but  all four of us are present, and I think that the pictures accurately capture life in our household right now!

Later this week we will attempt another first as a family of four--our first family road trip vacation, to Green Bay, WI, which is about 2.5 hours north of us.  I'm already making lists of everything we need to bring, and wondering if our car is really large enough to transport everything and still have room for the people, too.  We've been debating about whether we should bring the vest.  It takes up a lot of room (especially compared to the manual PT cups, which can fit in a sandwich bag).  The compressor itself goes in a roll-aboard-size bag with wheels, and then there's a second smaller bag for the hoses and the vest itself.  So, practicality says to just do manual PT while we're away, since we have to bring so much other stuff.  On the other hand, Lemon is really used to the vest now and I'd hate to change up the routine and then have him fight the vest when we get back.  I suppose we'll see how loading the car goes--I'm planning on doing nothing else Thursday morning! 

Lastly, we'd like to wish a hearty "Mazel Tov!" to Cousin Nathan and his beautiful bride.  We were disappointed to miss yet another big family event on the east coast, but hopefully this will be the last event that we miss for a long time.  Wisconsin being what it is, nothing is guaranteed, but we are determined to leave the state sometime in the next 12 months!

Week 104: Two under two

Although it's a few days premature, I think I can safely say at this point that we all made it through our brief experiment with having two kids under the age of two. 

Our nanny took this week off to deal with a family situation, and Nona and Opa were away for part of the week, so I spent A LOT of time with both kids.  I tried go on some sort of excursion with them each day--a trip to our local municipal airport, apple picking, a trip to the zoo, a trip to the grocery store, whatever it took to keep Lemon entertained (and tired enough to take a long afternoon nap!). 

We're also getting ready for the big event--Lemon's second birthday is just a few days away.  Being the "practical parent," my gift to him this year is a wheeled cart for his vest and nebulizer, so that they can be easily stowed in his closet while not in use.  We enhanced it with an iPad on a stand with speakers (so you can actually hear the videos over the noise of the compressor), and then added on a power strip so we only have to plug and unplug two cords each time.  The cart came with some nice hooks so that we can hang up the cords when they're not in use.  I know--being the practical parent is somewhat boring, but hey, it makes life run more smoothly to have one, right? 

And, I picked out a fun-but-practical gift for him, which Grandma Carol generously provided--a miniature trampoline to help him burn off some of his energy on rainy or cold days when we're stuck inside.  Plus, jumping on a trampoline is supposed to be very good therapy for CF lungs.  Of course, Lemon had his own ideas about what a trampoline is for.

Lemon is continuing to do really well with his vest treatments--I think he actually looks forward to the afternoon session because it's kind of nice to just relax on the couch and watch videos for a half hour at the end of a busy day.  He also really likes it when his little brother is in the room to "watch" him do the vest.  And how does Lime respond to being in a room with YouTube videos blasting at full volume over the thump of the compressor? 

Lime has continued to grow like a weed in a Wisconsin summer.  He was weighed today as part of a research study that we're participating in, and tipped the scales at a whopping 9lb 10oz, or a gain of over 1lb/week since coming home from the hospital.  No wonder I'm feeling a little drained!

Week 103: Vest at last

Lime is exactly one month old today--how time flies with the second baby.  He's starting to be awake for more of the day, and he's really able to focus his eyes on objects that come close enough for him to see.  He continues to be very even-keeled, and doesn't protest too much when his brother's trucks come a little too close for comfort.  He has a bit more of a "witching hour" than Lemon did, but even that is pretty mellow as these things go.  He is definitely continuing to pack on weight, and has maintained the feeding schedule necessary to maintain his current growth rate (yawn).

Lemon is acting more and more like the two year old he will soon be.  This week we've really struggled with eating, he turns down almost everything and often won't eat enough at a meal and get really hungry and cranky an hour later.  We're trying not to cater to him too much, offering him a few options for each meal and letting him figure out if he's going to eat them or not.  This week it's mostly "not," even his favorite foods, but this is something he'll just have to work through himself--we can't force him to eat!  Still it's incredibly frustrating after all the great weight gain we had in the last few months, to know that toddler stubbornness is going to take some of that back from us.  But, as I once heard a child feeding expert say, kids won't starve themselves to death, so eventually when he's hungry enough he'll start eating normally again.  Whether that happens before his parents lose their sanity is a separate question.

The biggest news this week is that we FINALLY received our vest.  After some final logistical snafus that involved our vest being temporarily MIA on a UPS truck somewhere in the great state of Wisconsin, it finally arrived and we had our training session on Thursday.  With all Lemon's recent wilfulness, I was a little apprehensive as to how he would respond to the vest, which basically is like putting on one of those paint-shaking machines that they have at the hardware store.  But, to my relief (and to the utter shock of the guy doing our training), Lemon didn't object at all to putting the vest on, and sat through a full half-hour treatment session without uttering a single word of complaint. 

So, our new routine is to do the vest treatment, which takes 30 minutes, twice a day.  In the morning, we do the nebulizer first, which takes about 10 minutes, so with setup time we spend probably about an hour and a quarter a day on treatments now, when Lemon is healthy.  That may not sound like a lot, but Lemon is actually only awake for about 9 hours a day, so almost 15% of his waking hours are spent doing his maintenance treatments.  That will expand to almost 30% of his waking hours when he is sick.  As we try to make time to have Lemon socialize with other kids, to start preschool, to go on more outings, I am starting to really feel the constraints that CF is placing on our lives.  Between sleep, therapy, and meals, there is so little time left (and only in very short blocks) for doing anything else.  Add a newborn to the mix and leaving the house seems to require nothing short of a highly improbable alignment of planets.  Luckily for me, the planets did somehow align on Sunday afternoon, and I was finally able to take Lemon out for a ride in our bike trailer--the first time we've managed it this summer.  He absolutely loved it, as did I, so I'm hoping we can somehow manage to do it more often for the rest of the summer.

Week 102: Local color

After the big emotional high of last week, it was nice to have a fairly normal week at home as a family.  Or, at least, as normal a week as one can have with a mama on maternity leave and two under two in the house.  Lime continues to focus on eating, sleeping, and growing.  It is truly amazing to watch how fast a "normal" baby puts on weight, and how effortlessly.  Well, effortlessly for the baby, anyhow. 

The only minor drama we had with Lime was more classic Wisconsin--somewhere between the form that Papa Bear carefully filled out and the issuing of the insurance card that we received in the mail, Lime's last name got changed to something that sort of vaguely rhymes with Papa Bear's and contains several of the same letters, but is in no way the same.  Of course, both the HR department at Papa Bear's office and the insurance company insist that there is no way that they were responsible for the error.  I'm inclined to believe that, even with a newborn in the house, Papa Bear is capable of spelling his own last name correctly, so I sort of doubt that he introduced the error.  In any case, he was patient enough to send multiple emails and make the requisite half-dozen phone calls to get everything straightened out again.  Who knows, by this time next year someone may have figured out how to bill the insurance company for Lime's first few pediatrician's visits.  I won't hold my breath.

Lemon continues to make excellent progress in terms of getting used to sharing "his" people with Lime. 



Lemon is also continuing to have a great summer, with lots of local adventures like harvesting vegetables from our garden, trips to the playground, and his very favorite, observing the trucks that come through our neighborhood.

By far the cultural highlight of this week was our outing to the National Mustard Day festival in the neighboring town of Middleton, home of the National Mustard Museum.  Lemon especially enjoyed the live music and a frozen dessert called "Mustard Custard" provided by the local restaurant chain Culver's.  Yes, it is exactly what it sounds like--frozen custard, flavored with mustard, and served with a topping of crushed pretzels.  It is as weird as it sounds but not half bad if you come at it with an open mind.

We're anticipating an exciting week this coming week because, a mere 10 or so weeks after we initiated the process, we finally got approved for Lemon to receive his vest, which will replace the chest PT that we've been doing manually since Lemon was just a few months old.  I am definitely looking forward to the vest's arrival, since there have already been many times where I've had my hands full with doing PT on a squirmy almost-two-year-old when I hear Lime start to squawk in the next room.  A company rep is coming to our house on Thursday to train us on how to use it, and to do a therapy session with Lemon.  Hopefully he'll be amenable--he tends to roll with almost everything so I am optimistic, but this will be a huge change for him.  We'll see!

Week 101: Sweet

After the emotional ups and downs of last week, we were treated to a week of just ups this week.  When I left you last week, I'd just called our pediatrician's office to try and find out the results of Lime's newborn screening tests, which would tell us whether or not he had CF.  At that time (July 20), the office denied all knowledge of the results and said they would be available at his two week checkup.  I was annoyed but resigned.

On Tuesday, we had Lemon's checkup at the CF clinic.  It was a great visit--he's up to 25.5lb, or almost the 40th percentile for weight on the WHO charts.  More importantly, at the moment he's gaining weight at 15g/day, dramatically exceeding the goal of 10g/day that his doctor had set for him.  After the weigh-in, the nutritionist came into the room and took a peek at Lime, who was with us, sleeping in the stroller, remarked on how cute he was, and said "It's such great news that he doesn't have CF."  And I said, "News?  I haven't heard any news."  But, a few moments later, the doctor came in and gave us a copy of the test results, which confirmed that not only does Lime not have CF, he actually has no CF-causing mutations at all, making him the most genotypically normal person in our family.  Interestingly, the test results were available July 16, but somehow no one thought to call us and tell us, for which they apologize, etc.  Ah, Wisconsin (and I'm not even telling you the latest on getting Lemon's vest...).  Anyhow, we're thrilled with the outcome, and look forward to the challenges of raising two boys with such different needs.

On Thursday, Lime had his two week checkup.  He left the hospital at 5lb 7oz, but managed to pack on a pretty amazing 13 oz in the intervening time, putting him at 6lb 4oz.  The doctor asked me if I had any questions, and the only one I could think of was, "Is it really true that he doesn't have any scheduled doctor's appointments til he's 2 months old?"  Welcome to raising a "normal" child.

Lemon has continued to adapt well to the arrival of his new brother.  In fact, the only time he has really displayed any jealously at all was when Nona was holding Lime.  He could care less if Daddy or I hold the baby, but Nona is his and his alone (as far as he is concerned).  

As you can see, the blog is in the process of undergoing a bit of a makeover, including a new title.  Many loyal readers liked the suggestion of using the word "citrus" in the title to reflect the two stars of the show, Lemon and Lime.  "Salt" refers to CF, which is fundamentally a disease of salt not being in quite the right places--resulting in, among other things, the exceptionally salty sweat of people with CF.  I am hoping to use my maternity leave to learn more about blog layouts and features so I can spruce things up a bit, so don't be shocked if things change from week to week for the next few weeks as I explore.  And, if there are features that you like or don't like, or things I don't think of that you would like to see added, let me know! 

Week 100: Bittersweet

Some weeks, we get a mix of the highest highs and the lowest lows.  On Sunday of last week, we brought Lime home from the hospital and began the all-too-brief period of bliss with a newborn baby at home.  On Tuesday, I lost my last living grandparent, my Grandma Frieda, in whose honor Lime is named (his real name, of course).  Frieda was a great inspiration to me and to all 13 of her grandchildren, with whom she forged very individual, very deep bonds.  She was a member of the MIT graduating class of 1945 (predating my own graduation by a mere 53 years)--one of just a handful of women brave enough to enroll at that time.  She carried out a war-time courtship with my grandfather, Felix, largely by mail as he served in the military and she remained home in Boston attending school.  After 6 years, they married and in due time had four sons, my father and his three brothers.  She dedicated herself to raising them and viewed her family as her greatest and most challenging creative project.  As we grandchildren came along, she devoted the same intense energy and focus to her relationships with each of us, and taught us by example to improve ourselves through education, culture, and our relationships with others.  She was the matriarch of our family and a true force to be reckoned with, and we will all miss her and cherish her memory.

With a week-old baby in the house, I was unable to travel to Boston for the funeral, marking yet another family event for which I remained stuck here in Wisconsin.  At least thanks to modern technology, I was able to view the moving funeral service and talk to some of my aunts, uncles, and cousins afterwards.  It was certainly not the same as being physically present but much better than not participating at all.














With all this running in the background, we tried to make this week as normal as we could for Lemon and Lime, since they of course had no idea what was going on.  Their presence was a huge comfort, especially because young children really live in the moment; nothing that has happened in the past makes much of a lasting impression, and the future is inconceivable.  Spending hours each day in that mindset makes even the most painful times go by.

So, we did some of the usual fun things--the playground, construction sites, the train set--and also went on a family field trip to the county fair.  Lime was pretty oblivious to the whole experience, but Lemon absolutely loved the fair--all sorts of interesting animals that you could see up close, a huge tractor, and baby chicks and ducklings that he could touch.

 

Other than that, we are still playing what we've come to refer to as the "Wisconsin Waiting Game."  I've mentioned before that everything here seems to take at least twice as long as it did in Boston, and now we're waiting for two things--Lemon's vest and the results of Lime's newborn screening to find out whether he has CF or not.  Lemon's vest is still tied up in some phase of paperwork.  As of our last contact with the company, they were waiting for a letter of medical necessity from our doctor, which, as Papa Bear put it, is probably on its way to them on a camel  as we speak.  As for Lime's results, we were promised when I was pregnant that his testing would be expedited.  I called his doctor today to ask if there were any results yet, which there were not, and might not be until Thursday.  I declined to mention at the time that Lime is now 10 days old, the same age as Lemon was when he was diagnosed in Boston, and the fact that it took Lemon 10 days to get diagnosed in Boston provoked a hospital-level inquiry and implementation of new quality control guidelines.  We have a clinic visit for Lemon tomorrow so rest assured that they will be hearing my (sleep deprived, unedited) opinion on all this!