Monday, May 25, 2015

Week 92: Just regular

Sometimes, on a Monday morning, our nanny will ask me whether it's going to be a "regular" week.  Over the past few months, I've come to the conclusion that whether or not a week is regular is something that can only be assessed in retrospect.  And, I am delighted to report that the past week has been a regular week.  After so many irregular weeks in a row, having one regular week has felt like a vacation.

We kick off every morning with Pulmozyme.  Lemon's current favorite video to watch while doing this treatment is an animated film about a garbage truck who goes around the city collecting trash from dumpsters.  It begins with an overly hearty narrator saying, "Good morning, city.  The time is 5:30 a.m."  I really feel that I do not need to be reminded of this fact on a daily basis.  But, Lemon finds the video so transfixing that he sits as still as a statue during his treatment, so I feel that it is medically justified.  Then we move on to our first round of PT, with videos on diverse subjects including construction vehicles and trains.  After PT, we do breakfast, which begins with enzymes always features a high calorie shake, 2mL of special CF multivitamins, 1mL of extra vitamin D, 1.4mL of ranitidine, 2.5mL of cetirizine, and a probiotic.  Then Papa Bear and I head off for work, and Lemon has all sorts of fun with the nanny and Nona until I get home.

We've added a really fun ritual to the end of our day, where Lemon and I sit on some folding chairs at the end of our driveway, eat popsicles, blow bubbles, and remark on the steady stream of vehicles that drive past our house.  They come in a variety of models and colors, as it turns out.  Sometimes, they come in groups and can be counted.  Periodically, something truly spectacular like a tractor trailer goes by.  Eventually, Papa Bear appears either by bus or by bicycle, indicating that it is time to go inside to watch more videos, do another round of PT, and eat dinner accompanied by enzymes (of course), 1mL of iron, 2mL of vitamin D, a dose of glutathione, and 1.4mL of ranitidine.  Then there's nothing left but a bath, books, and bed.

This week, we also completed a feeding study with Lemon.  He's been in an observational study since he was born, looking at the effects of diet on outcomes in kids with CF.  Periodically, we have to record every single thing he eats for 72 hours, and we took advantage of the long weekend to get that done.  So, when you read the published study some day, just remember, this is how they knew how many miniature Goldfish crackers he ate!

Monday, May 18, 2015

Week 91: Great Strides Madison

I hardly dare to type these words, but this week we have no health issues to report.  None.  Everyone is well.  Now, dear readers, please go throw some salt over your shoulder or knock on some wood or whatever it is you can do to help us avoid any jinxing that may occur because I have put these words on the internet.

This weekend was a real treat.  Our friend Jon came to visit and join us as part of our team for the Great Strides walk on Sunday.  The weather Sunday morning looked pretty dodgy, but luckily the rain managed to hold off.  The walk began and ended in the stadium that is home to the illustrious Madison Mallards (a minor league baseball team).  All the teams rallied there before the start, and requisite team photos were taken.  Then, the official from the CF Foundation and I said a few words--my speech is below.  Finally, it was time to walk, and we did about 3 miles through a beautiful park.  I got to reconnect with another CF mom from the local community that I hadn't seen since last summer.  It was really nice to chat with her--even though this was only the second time we've met in person, it feels like we're old  friends since our kids are around the same age, go to the same clinic, and have faced a lot of the same issues.  We spent most of the walk trading tips and ideas, and making plans to connect at some other CF Foundation events in the coming months.

Thanks again to everyone who sponsored us this year, we are so grateful.

Great Strides Speech, 2015

Good morning.  My name is XXXX, and I am the captain of Team XXXX.  We are walking with you this morning for my son, Lemon, and everyone else who is afflicted with cystic fibrosis.

Cystic Fibrosis is a genetic disease that affects many parts of the body, especially the lungs and digestive system.  I think you can see as you look around you this morning that people with cystic fibrosis and the people who support them are a very special community.  We are a community of just 70,000 patients worldwide, and yet we have the ear of the President, the head of the National Institutes of Health, and the major pharmaceutical companies.  We may be a small community, but we are loud and we are relentless, and thanks to everyone here, our message is being heard.   

These are exciting times for the cystic fibrosis community.  Just 5 days ago, an FDA advisory panel voted to approve Orkambi, a two drug combination that will treat the root cause of CF in 50% of patients.  Along with Kalydeco, which was approved a couple of years ago, that means there are now drugs to treat the underlying defect in over 60% of CF patients.  For those of us in the remaining 40%, I have confidence that great medicines are coming for us soon as long as we keep up the fight.

Today, we are here to vote with our feet.  We are here to say that we are never giving up hope.  We are here to say that we want Lemon and every other patient with cystic fibrosis to live a long, full life.  We are here to say that we can taste victory and we will not give up until we achieve a cure for everyone with cystic fibrosis.  

We are here to say that every dollar we raise is one dollar closer to our goal.   We are here to say thank you to the CF Foundation, to our sponsors, and to everyone who has supported us on this journey.  This is a long hard fight, and we could not do it without you.  Have a great walk!

Monday, May 11, 2015

Week 90: April showers bring...

As of last week, we were really excited that winter was behind us and were hoping for a few weeks of relative calm and health with the arrival of warmer weather.  Little did we know that warmer weather had a new surprise in store for us!

On Tuesday of this week, not 12 hours after posting last week's edition of the blog, I got up as usual to begin our day with Pulmozyme.  When I got Lemon out of his crib, I could hear just the faintest snuffle in his breath.  I tried hard not to think about it and went on with the day.  But, by afternoon that snuffle had turned into a drip.  We've had a lot of recent experience with drips and where they lead, and I decided to come home from work early to do an extra round of PT to try and ward off the inevitable.

The drip continued into Wednesday, and progressed to include some sneezing and coughing as well.  But, there was something about the presentation of these all-to-familiar symptoms that was different this time.  Lemon was in excellent spirits and full of energy.  His appetite was strong, and there was no vomiting.  I thought, as I stared out the window, could this be a new bug of some kind?  Where would he have picked it up, since we'd been so careful about hygiene?  I continued to turn these questions over in my mind as I gazed through the hazy, yellowish air at the blossoming trees and the parked cars coated with a sticky green film.

And then, suddenly, out of nowhere, it came to me--what if Lemon has seasonal allergies?  I put on my shoes and walked straight over to Target to pick up some children's cetirizine (aka Zyrtec), which we started him on the next morning.  We started him on the minimum dose, since technically it's for kids 2 and up and he's only 21 months.  We didn't see any marked improvement, and actually his cough continued to get worse for the next few days, making me think that possibly I was on the wrong track.  But, the symptoms still weren't the same as his previous illnesses and he was eating well and behaving normally, so I thought it would be OK to give it a few more days for the cetirizine to really kick in.

As Lemon coughed through the night on Thursday night, another idea came to me. Perhaps it was really not optimal for him to be sleeping in a bedroom that we'd been airing out pretty frequently since the weather got warm.  Opening the window did make the room smell nice, but also let in the aforementioned yellow haze.  So, Friday we kept the window closed all day, and on Saturday night we installed a HEPA air purifier.  He coughed much less on Saturday night than on Friday, and last night (Sunday) he didn't cough at all and slept straight through.  This morning, he was more or less back to baseline.  Phew!  Now if we can just stay in the clear for another 3 weeks, we will actually make it to our next regular clinic visit without another crisis...

In other CF news, our Great Strides walk is coming up on Sunday.  Competition has heated up and our team is now in 6th place overall.  We are still in the running for Rookie Team of the Year (the new team that raises the most money) and if you haven't made a donation yet but were planning to, this would be a great time to chip in and help us secure that award!  You can go straight to our fundraising page by clicking here.  I have been asked by our local CF founda
tion chapter to give a short introductory speech before the walk, which is a very exciting honor.  The walk starts at Warner Park, home of the minor league baseball team the Madison Mallards.  The walk organizers secured use of the stadium including the jumbotron, so it is my understanding that images of yours truly will be broadcast to everyone present at several times life size.  Luckily Papa Bear and our dear friend Jon will be on hand to document this momentous occasion.

To all of you who have already donated so generously to our team and to all of you who are just seconds away from clicking on the link to our fundraising page (yup, this link, right here) and making a donation, thank you for your incredible support.  Photos and a walk report next week!

Monday, May 4, 2015

Week 89: Breath of fresh air

We had a few very nervous days at the beginning of this week.  Lemon came off cefdinir on Sunday, so we spend Monday and Tuesday watching like hawks for any sign of a cough, sniffle, or drip that might signal the return of whatever's been plaguing him for the last few weeks.  Thankfully, it seems like all our efforts with the antibiotics, PT 3 times a day, and pulmozyme paid off and at our clinic visit on Wednesday morning we were told that we'd dodged a hospitalization for now.  Phew!

We are still on a sort of heightened alert status, though.  Up until now, if Lemon came down with an illness that we thought required antibiotics, we could just call the clinic and they would send a prescription over to our pharmacy without seeing us.  Now, our new plan is that if Lemon comes down with something, we actually have to go into the clinic for him to be evaluated.  And, if that happens, we've been told to bring a bag in case they decide to admit us straight from the clinic.  So, here's hoping that he stays well long enough that we get taken off of that status too.  I'm hoping for things to stay clear at least until our next regular check-up at the end of this month, when we can discuss the revised plan with his doctor.  In the mean time, we're keeping up with pulmozyme and PT twice per day (instead of once like we used to do).  This might be our new baseline regimen.  It's been made infinitely easier by Lemon's growing appreciation of truck videos from Youtube.

Even with our new heightened alert status at the back of my mind, we've been able to really enjoy spring these last few days.  The weather here in Madison has been glorious, the grass is green, the blossoming things are blossoming, and the leaves are starting to come out on the trees.  It's even been warm enough to go to the playground without a jacket!

All this warm weather has also brought it to my attention that Lime is scheduled to arrive in around 12 weeks.  With all the tumult these past couple of months, I don't really feel like this pregnancy had a second trimester at all.  Ah well.   Here's hoping the third trimester will be a bit more settled so that I can actually prepare for the arrival of this little stranger!