One would THINK that with the kids in kindergarten all day long, I would finally have time to do the gazillion things I have wanted to do for months AND manage to clean the house and cook and shop and all the boring stuff too. But nope. That's just not the way it happens for me!

I am a master at filling up any moment of "free time" I have so that there is never truly any free time left. I think it's because I see the open time and think that I can now do all these NEW things... so I never get around to everything else that's actually been sitting on my to-do list for a while. 

So in the last week I have written a CV (like a resume) for the 1st time since 2005... applied for a job, which I didn't get but that's ok because... It helped push me to start designing again. That's really where I have spent most of my time... design sucks me in!  And I love it! and.... I FINALLY started my Danish language classes. So in no time I will be able to speak a little danish. or at least know the alphabet. ;-)

Anyway... I know most of you really just want to hear about the kids. And pictures are better than words. So here are some photos from the last few weeks that show you how we've been spending our days since finally getting healthy!!! Spring has truly hit Denmark, and it's lovely!

This is the kids at the entrance to their kindergarten, called Mariehønen (ladybug). They love it so much and are happy to go every day! And this is us on the walk home one bright sunny afternoon!

Last Sunday the weather was so beautiful, we spend the whole day outside. Colin has been practicing riding his bike, and then later DJ & I rode the kids to the beach (about 15 min bike ride) where Colin touched the water without screaming for the 1st time in his life, and the kids threw shells into the water for an hour... while DJ & I looked around in awe of the wonderful, beautiful place we now call home!

We love cycling. And the kids love it too. Sometimes we sing songs while we ride or Colin will yell for us to go "super fast!!" It's becoming such a special time for us... I only wish I could get around everywhere with both kids in tow! I still have to use the stroller sometimes. But these family trips are the best!

Colin had such a wonderful time at the beach, he kept asking to go back the whole night. One morning this week he had his 4-yr old well check at the local doctor's office, so I took him down to the beach in the morning for a little quiet playtime before his appointment. It was a very special time for the two of us. The sun was just rising over the water, and there was no one else around. We took turns tossing the shells into the water, and I was glad to catch this little bit of him playing on video. You can't hear it well, but the last thing he says is "mommy... I like the beach." ...Enjoy!

Any of you who get updates via Facebook, you probably saw the photos and convo about Katelyn's rash and other various symptoms this weekend that I was (mildly?) freaking out about. From all the different medications she has been on, I know she has had several allergic reactions. I just don't know if there was anything ELSE going on in addition to all of that... but the good news is that Sunday she looked a lot better, and today she was doing fine. Back to her normal self! (and she even had her 1st partial day at kindergarten today!)

We are still not "in the clear". I take her to the hospital tomorrow for a new round of blood tests, to check some levels that were not in the normal range on her last test... nothing to worry about right now... just have to see if there is consistency or if the meds may have been altering the levels.

As I found myself thinking about everything that has been happening over the last few weeks, (and feeling bummed about missing St. Patricks day festivities last weekend), DJ and I have realized we usually don't remember the month of March.

Really.

Thanks to Google Calendars, I flipped back through the months & years to review... and it's completely true. I know challenges are faced all over the year, but for the last few years, it seems like March has been the most insane month of all. I seriously don't REMEMBER much on my own. I don't know where I would be without photos to remind me of the life I am living sometimes!

And maybe things aren't that bad this year after all. They certainly aren't much worse than they were back in March 2010... with Colin in the hospital and Katelyn sporting her brand new cranial helmet... oh, good times. 

It is a great feeling, however, to look at a photo from last March, and to remember taking it. To feel like it was not that long ago, but to see just how much my children have grown. It's a precious reminder... to cherish the days we have. As I always feel when coming out of a phase where so many of my decisions, and the way my days are filled, are out of my control... we must all appreciate and take advantage of the time we have when we are healthy. While we are together. Because time moves so quickly. And life is too precious to waste one day.

On Monday, Katelyn's PICC was removed and we ended the round of IV antibiotics a few days early, due to an allergic reactions she was having from the medicine (fever/rash). However, she is still continuing the oral and nebulized antibiotic for a couple months to ensure we have completely eradicated the Pseudemonas from her  system. Plus, they started her (and Colin) on a medication called Fucidin as a treatment for staph, which showed in her February culture. She had never taken this medicine before, but Colin has multiple times with no issues.

By Tuesday, Katelyn was irritable, with a periodic fever up to 102f, constipation/diarrhea, and vomit. Wednesday she took multiple naps without complaint and would hardly touch her food. Thursday morning, she was awake for about an hour before ASKING to go back to bed. She slept some, but mostly just lay in her bed, sipping her juice for 5 HOURS. Only getting up because I made her come downstairs and try to eat something. 

Clearly, something was wrong.

It wasn't until Thursday night, when I noticed her energy level was higher than it had been all day and she ate almost half her dinner, that I realized what was wrong. She took her Fucidin at dinnertime. Then went to bed. Within an hour she was screaming because she had thrown up all over herself and the bed. 

Another allergic reaction?

Today I didn't give her the medication. She still won't eat much, but her energy is back... so much so, I can't get her to even relax and take a nap at all! I finally spoke with the nurse about the symptoms and my thoughts on what is going on. 

It's hard to know exactly if the fucidin is the root problem, but it's a good theory at this time. She's not taking it any more. Thankfully, her most recent culture did not even show the staph in her system, so it's not even needed anyway. But I will certainly act with hesitation if they ever try to prescribe it to her again!

I just want everybody to be healthy. I miss making plans. Having fun. Spending time as a family that doesn't involve medicine or cleaning the vomit-covered sheets...

It's St. Patricks Day this weekend. There's a fun parade in the city. I have wanted to go for weeks since hearing about it. Kid-friendly festivities, beer, and people who wish they were actually Irish like us? Nothing sounds better.

But once again, I'm doubtful we'll make it. Just another holiday celebration we DON'T celebrate because we can't make it work with our health and schedule. I just hope the kids don't grow up to feel like they missed out on a bunch of fun childhood stuff... because sometimes, that's exactly how I feel about it.

It's hard to know where to begin. Once again, things are not going as I had expected. And I'm doing the best I can to roll with the punches. To stay calm and focused. To keep moving, adjusting to the changes that occur.

Sunday morning, I noticed a splotchy red rash on Katelyn's legs, noting to DJ we should keep an eye on it. Not long after, she started getting very cranky and tired. She had a fever, and so I put her to bed... assuming in the midst of all her treatments and time at the hospital, she caught a virus. 

As the day and night went on, it got worse. Vomit. Fever. Aches. Lethargy.

After finally cleaning her up and getting her back to sleep around 2am, I found myself lying in the bed, googling "tazocin" on my iPhone - one of the medications she has been receiving through iv 3x/day. I learned a lot. Specifically that it's a strong drug that should only be used when absolutely necessary, and that there are a ton of potential side effects. I laughed a bit to myself at one article I found, where the very last line was "associated with an increased incidence of fever and rash in cystic fibrosis patients". 

Honestly, seeing it written down eased my worries a bit. Of course I did more midnight research, resulting in the discovery of forums where CF adult patients discussed how Tazocin and other IV antibiotics affected them, most interestingly one man who said he can only tolerate a 10 day dosage or his body goes under attack.

Katelyn was on day 12. She started complaining (in the form of "i need to go potty!") a few days earlier, literally in the exact moment i began to push the tazocin into her line. 

I think she associated the aches from the medication as the need to pee. Because she would never actually pee. And it's crazy how I can see all the pieces fitting together now, but at the time I was just annoyed that she didn't tell me she had to use the bathroom BEFORE I started her medication!

I know better now.

When we woke up this morning and she was in good spirits, I pretty much confirmed the rash and fever as an allergic reaction when within minutes of her morning dose she began to complain of aches, her legs, arms and face turned bright red and her fever spiked higher than before. 

Thankfully, we already had our monthly CF clinic visit this morning. And the moment they saw her, they knew that yes, it was an allergic reaction.

Long story a little shorter: we stopped the tazocin. Her fever was up to 40.3c/104.5f, and she was so close to the end of her 14day dosage, the doctor believed we would be fine to end the tobramycin that she was taking 1x/day as well. 

Which means... the PICC line came out today!

No more IV. No more nightly meds. No more pink arm bandage (which she is still sad about... she loved that bandage on her arm!!!)

We'll know in about a week the results of her and Colin's latest sputum culture. In the meantime, Katelyn continues her oral and nebulized antibiotics, and Colin is going on a couple oral meds for a gunky nose that I am 99% certain is going to show staph (again) in his culture. Staph is colin's #1 enemy. Nearly every other month, he gets a snotty runny nose and labored breathing... and it's always staph (and lately, NON-mrsa... which is the "good" kind!)

I'm glad that I can speak with authority about his medical history. I'm glad that I know my kid and his typical reactions... And that the medication works to keep it the bacteria at bay for at least a little while. And that the doctor was willing to prescribe it without official culture results yet.

We'll be better in no time. Back to whatever "normal" we can create. (but that's for another post...)

Today while I was up at the hospital picking up the daily meds, I felt a bit annoyed that I had to travel a few hours out of my day (in the rain) and come get the medicine, while DJ and the kids were playing and hanging out at home. But quickly I had to stop myself and recognize that I am lucky to not still be living there 24/7. Traveling to get the meds is the GOOD solution.

As I sat and waited for the nurses to compile everything, I looked around and found myself reflecting on some things I found unusual - or at least different - than healthcare in the states. Really it all started when I saw a nurse walk by, dressed in her all-white uniform, and wearing pink flip flops! This wasn't the first nurse I saw spending the day in open-toed shoes. Which I am sure is comfortable, but am certain probably goes against a bazillion regulations in the US... where bright, personalized colorful scrubs and supportive, closed-toe shoes are the norm...

Since it was Saturday, the staff was lighter than a regular weekday. It's hard to even find a nurse when you need one on a weekday... weekends are especially quiet and empty. But it's kinda nice... the nurses don't bother you unless you need them. No one hovers around and checks in on you ever hour. You mind your own business, they do their job, and you hit the "nurse" button if you need some help. But even the receptionists desk is not always covered - where as at Levine there were always people sitting around, chatting, all hours of the day and night. I suppose I prefer the "we're here when you need us" approach vs. the "customer service, always ready to help" style of care.

There are so many moments where I forget I'm half-a-world-away from the city I grew up in. But then there are times when it's outrageously clear - this is a different place.

Today I traveled by cycle. It was my first time bringing my bike on the train, into the city. It's 2km from the train station to the hospital, so typically I take a bus or walk. I prefer to walk. The bus is crowded, especially when traveling with a stroller... but it was raining today and walking was not an option. So I ventured out... cycle in hand to tackle the city streets, other riders, and traffic laws.

The city looks different on a cycle. I noticed things I'd never seen before, like directional arrows on the pavement, and the fact that the stoplight turns from Red to Yellow before Green... like it's signaling "get ready to go",,, and it was VERY helpful! I have walked those same streets many times, and just never noticed it before.

Also it's not a requirement to wear a helmet here, as cyclists have the right-of-way over cars and pedestrians - it's just pretty safe. I've been very good about recognizing this hierarchy on f, but I had a hard time believing I didn't have to stop for the people or the cars... that the best thing for me to do was keep riding... cause they were all waiting on me to pass. Funny how some systems completely go against what feels right in our minds. 

I got lost though. I have an alarmingly terrible sense of direction, and I have relied heavily upon my iPhone and google maps to get me around over the last few months... but you can't exactly stare at the phone while driving the cycle. By the end of the day, and circling a few blocks while I found my way back to the station, I was feeling more confident in my cycling skills and my ability to ride on and navigate the city streets. However I still feel nervous about parking my bike in a lot like this...

Today when I got home from picking up the kids, the sun was blaring through the kitchen window, which is such contrast from the ultra darkness we experienced at this same time just a few months ago. I just felt good. And needed to turn on some tunes to compliment my elated mood.

I turned on The Decemberists "The King Is Dead" album that I have listened to a thousand times... but when I heard the lyrics of "Don't Carry It All" I was stopped in my tracks. 

Is that not our story right now or what? Thank you, thank you, thank you.... to those of you who have lent a helping hand. Or a car. Or an ear. We are so grateful. We are all in this together, and we are so grateful for you all.

Good news: We're home! Katelyn and I packed up our bags and finally left the hospital around 3:00 this afternoon. It's nice to be back here, but will be even better after I actually unpack tomorrow and settle back in to our semi-normal life. We still have one week left of the IV medication, which I will be giving 3x/day. I will have to keep reminding myself that this is not over. Just because we're home... we're not done yet.

I just finished the evening dose, and I have to admit... it was a LOT easier when on a waist-high hospital bed with a convenient side-table to lay it all out on. I'm sure it was a funny sight as I knelt on the ground beside Katelyn sleeping on the bottom of her bunkbed, making my "workspace" on the floor within reach. It'll get easier. I am sure I will develop a perfect system by the last day... but at least she AND Colin slept through it! Mission accomplished.

Now if you'll excuse me... I have a SUPER comfortable mattress and a pillow that actually fluffs calling my name... I'm gonna sleep good tonight! :)