Memorial Day Fun

We lucked out and had fairly good weather for our Memorial day getaway! While it wasn’t 90 degrees like this time last year, we enjoyed weather in the 60s and 70s – perfect spring cabin weather! Gavin had little if any memory of the cabin from last summer, but on Saturday morning he woke up and asked me when we were going fishing :)

Speaking of waking up, this weekend he slept in a big boy bed at the cabin for the first time ever! On Thursday afternoon I told him that in his bedroom up north there is a crib and a real bed, and asked him which he’d rather sleep in. He jumped up and down and yelled for the big boy bed. He did fantastic! He was so tired when we got up there on Friday night that he just passed out & I knew he wouldn’t attempt to get up until morning. But on Saturday he slept in the bed for a long nap, and slept in it at night without one single issue. It was a little heart wrenching to actually tuck him into bed to sleep, my baby is officially all boy now (potty training here we come – that part of baby life I am ready to be rid of!)

The rule at our cabin is that all little ones have to wear a life jacket at all times if they are near the water. Luckily, Gavin loves to wear his – and actually gets upset to take it off. Good thing, because he has no fear. There were several times that I had to reach over and grab him, to prevent him from falling in fully dressed.

 
(since it was too cold for swimming/water fun the speed boat never made it in the
water – hence the empty boat lift!)

At one point in the morning, Gavin kept yelling, “I want to drive!” And I was totally confused, the speed boat wasn’t in the water – what in the world did he want to drive? And then I realized, he saw the boat lift and thought that it was a gigantic steering wheel

 

And just like his mama, Gavin loves to fish. For awhile we let him play with an adult sized fishing rod, but then dug out his child sized one. Funny enough, his never had any fishing line in it, but he still “fished” all weekend!

We fish for crappies (pronounced craw-pees) off of our dock, it’s actually one of the best “fishing holes” on our lake and we tend to use minnows for bait. Every time I’d reel my line in, Gavin would exclaim, “Wow, you caught a fish Mommy!” when he saw my minnow on my hook :)

For a good part of the afternoon, Gavin hauled around his two new friends in a bucket and taunted them with a shovel, trying to scoop them out.

 

 

It isn’t tough to figure out why we found a tick on Gavin during dinner on Sunday when you see what he plays in while we’re up there. He loves crawling through the woodpiles, digging in the sand, and sneaks into the woods when we aren’t paying attention.

This is a kid that loves the outdoors. I am considering taking him on a brief camping trip this summer – if we can find the time! We will be out of town (or busy getting married, ha!) nearly every weekend until August! Once upon a time I was afraid that Cystic Fibrosis would take this kind of fun out of our lives, but we win again! While it takes a little more planning & preparing, we will continue to enjoy the Minnesota outdoors! Get used to the back seat CF, you’re going to be stuck there for a long, long time!

Since Gavin did so well in a twin bed this weekend, I decided to ignore his demands to stay in his crib and changed it into a toddler daybed when he was busy playing with Daddy. After an initial freak out, he was so excited to be able to get in and out of his bed all on his own. He even asked me to go get my camera to take pictures!

Once again, he stayed in his bed the entire night – I actually had to wake him up this morning.

As much as I love long weekends, its hard to get back to the real life on Tuesdays. The daycare kids (including Gav) are cranky and naughty, I’m cranky and I need five o’clock to get here so I can relax in the sunshine with a beer :)

Fingers + Paint = Fun

We turned the heat on in our house last night. At the end of May we needed the heat. Seriously, summer – where are you!

But, in spite of the not so summerlike days, we’ve been getting outside as much as possible. Including some fun with finger paints. My budding little artist apparently takes painting very seriously – he would get very upset with me if I tried to talk to him and interrupt his work!

 

Initially he was upset that his hands were getting “dirty” but quickly learned that it was all part of the fun!

 

Happy Memorial Day weekend! Enjoy, and be safe!

Cowboy Hats, Ponies, and Jumps

Raindrops and Rays of Sunshine

I don’t know what it is about weekends where very little is planned, they always seem to end up being some of our busiest times!

This past Saturday, Casey and I spent eight hours at our church in a pre-marital class with four other couples. Some was very beneficial, a lot was definitely geared toward the typical, “we met a year ago” engaged couple who hadn’t really lived “life” with another person before. And in our class of five couples, four of us had been together a fairly long time, two of us already had children, and one was on a second marriage. So…it was a long day. But we did it, we learned from it, and we will be getting a discount on our marriage license :) Just forty some odd days to go!

It was an odd weekend, weather wise. It went from torrential rains/storms…

catching raindrops

trying to catch some raindrops on the tip of his tongue

 

…to warm, sunny weather in the blink of an eye

On Saturday night our neighborhood gathered outside to celebrate a beautiful evening, and Gavin ran around with the big kids until nearly 10:30 at night. Did he sleep in any longer on Sunday morning?  Of course not – but he slept for well over 12 hours last night and will hopefully take a long nap today – because he is one crabby kid today!

We lucked out and missed all of the major storms that came through our state…but we wouldn’t mind one major hailstorm. We’re going to need a new roof in the next couple of years, and a hailstorm would allow us to complete the task through insurance vs our own pocketbooks :) We also installed some pretty major shelving in our garage (yay!) but because of the storms rolling through yesterday we had to rush to shove stuff around to get our van inside and haven’t gotten a chance to get everything as organized as we’d like…pictures to come once that task is complete!

It started out so peaceful…

It was a beautiful Monday. Not a cloud in the sky, just a slow & easy breeze, and temps in the mid 70s. With this mama slowed down by her knee, I needed an activity to keep Gavin occupied without much (if any) assistance needed from me.

So I got him some water and a foam craft brush, and he set out to “paint” the sidewalk and driveway.

Before long, the neighborhood kids began walking home from school, and lately our front yard has become quite the hangout after 3:30. While some of the kids stopped by to help Gavin with his art, Gavin quickly learned that if he flung his brush, water sprayed everywhere – quickly starting a water fight. Someone ran and got more brushes, and the chaos began

All of the kids had an absolute blast, and unlike a water balloon fight there weren’t any broken balloon pieces needing to be picked up!

Best part of all? I was able to enjoy the fun from a dry lawn chair, camera in hand!

Time is flying by…

I cannot believe that we’re already halfway through the month of May. Lately, I feel like every time I blink a week has gone by.

In typical Minnesota spring fashion we’ve been dealing with a day of freezing rain immediately followed by a summer like, 80 degree sprinkler kind of day.

We’ve been busy with daycare and planning our wedding. This last weekend Casey’s sister and son, Grant, came into town for some wedding festivities.  But let’s be honest, the boys were clueless about anything “wedding” going on, they were just happy to be able to spend some playtime together!

 

Between our house & Casey’s parents home there are some large, rolling hills. One road, which Gavin has dubbed the “Wee! Road” gives our little guy the feeling of riding his own roller coaster, all while he’s safely buckled up in his car seat. He knows exactly where this road is, and melts down if we don’t drive on it. He’s also learned how to throw his arms in the air yelling, “Wee!” while we ride up and down the hills.

I was able to enjoy a weekend filled with activities, first on Friday I was spoiled with a beautiful wedding shower

And on Saturday I was once again spoiled with a fantastic bachelorette party, downtown Minneapolis.

After a night of dancing – and yes some adult drinks, but no one went over the top – I was standing and talking to my cousin, and Maid of Honor, and my knee gave out on me, dislocating on my way to the floor. I have had knee surgery in the past, but never really struggled with any major issues following it – I guess this mom who normally lives in flip flops/sneakers is no longer able to rock some snazzy high heels all night on the dance floor anymore. The fall resulted in a pretty horrific looking knee, but I promise that it looks much, much worse than it actually feels. And per the doc, I should be ready to go by the wedding, whew!

 

I’ve now spent the last three days holed up on the couch, trying my best to hang out with Gavin while simultaneously nursing my injury. At least it gave me plenty of downtime to send out thank you cards, and our wedding invites!

Just seven weeks to go!

Day 3: Medications and costs

In the CF world, Gavin’s list of medications is pretty short. In contrast with the “normal” world? It’s pretty out of control.

• 2 mL of Albuterol + 2 mL of Mucomyst inhaled 2x per day via a nebulizer treatment
• 1 puff of Flovent inhaler 2x per day
• 6 Creon 6 capsules with every meal or 4 with a snacks
• 1 mL of CF vitamins 2x per day
• 30 minute Vest treatment, 2x per day in half hour sessions

 

When Gavin is taking antibiotics, we also have him take probiotics – currently he’s not on either, but that can easily change in the blink of an eye.

We were spoiled for the first two years of Gavin’s life, because of his age we qualified for state aid which paid our out of pocket medical expenses. Considering Gavin’s med bills are between 8 and 10,000 a year – that definitely helped us out a lot. Right now, we are struggling to find a program we’ll qualify for, even for just a little assistance. But we fall into a catch twenty-two. We make “too much” to qualify for the programs but not “enough” to comfortably pay the bills.  Gavin is also considered “too healthy” to qualify for some disability programs – yep, too healthy. He’s healthy because he receives amazing care, if we just stopped caring for him and he got sick he’d get right into one of the programs – so frustrating.

But, we can handle it we always do. We are just plain lucky to have these medications available so that our little guy can continue living his normal little life!

Day 2: Year 1

Because May is Cystic Fibrosis Awareness month, I am taking some time each day throughout the month to bring you through our journey.

Somehow I am supposed to sum up our first year within this one post. Wish me luck on this one!

Our first clinic appointment at the University of Minnesota was a relief. Odd perhaps, but hearing the doctors opened my eyes to the reality of what CF is today. Yes, it will be tough work. Yes, our lives will be forever changed. But there is hope. At our clinic, the plan for children born today (and within the last couple of years) is to live full – and fulfilled – lives. We were told that yes, we need to plan for college savings. That yes, he will need to save for retirement. And yes, he someday get married, have children and someday grandchildren.

It was a year filled with tumultuous highs and lows. The first few weeks are a vacant blur, filled with out of control hormones and tears. Everyone around me was telling me that I had a perfect little boy, but I looked at him and only saw CF. I was convinced that there would never be a day where I could look at him and see just “Gavin,” not “Gavin who has CF.” It was a dark time, and I only snapped out of it because of Casey. About 6 weeks into our journey, he looked at me and said, “I need you to be here now. I can’t do this alone. We have to do this together.” And from that point forward, we became a normal family. Two happy parents, one happy baby…just with a little extra daily work than the typical family.

 

We visited the clinic every month for the first six months, then every other month until he was one. We quickly realized that we would know some of his medical team members better than our family/close friends! Gavin’s medical team consists of a pulmonologist, respiratory therapist, nutritionist, genetic counselor, social worker and nurses. To this day, they love to see how much he has grown between visits – we love that they remember each family and truly care about life other than CF. While it is tough to accept that our little guy needs an entire team to keep him healthy, we are beyond blessed to have such amazing care.

Besides the diagnosis through the newborn screening test, they also do a “sweat test.” They put a dab of a chemical on Gavin’s skin that forced his body to sweat in that small spot. A sensor was placed on that sweat “spot” and after a few minutes they take a reading. Anything over 50 is a positive result, I don’t remember Gavin’s exact number but it was high. That does not indicate a more/less “severe” case – it just states a positive result.

We were told that Gavin’s pancreas is insufficient – it doesn’t function. Therefore his body does not make the enzymes that break down his food and allow his body to absorb it’s nutrients. Therefore, he was started on pancreatic enzymes - a small capsule that can be swallowed or opened up and emptied into a spoonful of applesauce – that allows his body to absorb the food/nutrients. Attempting to get a five day old to eat a bite of applesauce? Interesting to say the least. And remember, infants are up at all hours, so in middle of the night feedings I would have to get his applesauce, dump out the capsule, and try to get my newborn to swallow it before I could even feed him. That is a part of our lives that I do not miss!

Very early on, we started “Chest taps” twice daily. Thumping on his chest, sides and back to move that sticky mucus around. In the beginning we did it while he was awake, but as time went on we waited until he fell asleep…and he’d sleep through the entire event.

Just when I thought I was “comfortable” with CF, they threw in the nebulizer. Lesson one for with CF, don’t ever get comfortable with it, something new/unknown is always around the corner.

When Gavin was just under a year, we were able to get him a Hilrom Vest. This machine truly changed our lives. From that point on, we didn’t have to teach anyone the crazy instructions/methods of his chest taps/CPT we just had to show people how to turn it on and start it up…the work was done for us! We were no longer limited to immediate family taking care of him. Our concerns that Gavin would not adjust well the machine couldn’t have been more far off, from day one he has done amazing with it, sitting for an hour each day (2 half hour sessions) while getting thumped away.

 

It took us between seven months and a year to really move through the grieving process; to accept that the disease was in our lives, and that there was nothing we could do to change that. We began to focus on what we could change. We could raise awareness, we could raise money to fund research/new medications, we could stay up to date on all of the new medical advances. Six weeks after Gavin was born, we walked in the Great Strides walk and raised over $7,000 nationwide.

We continue to raise Gavin just like any other child. He runs & plays, he gets dirty, and he laughs & cries. The first year was tough, mostly because we feared the future. Today, we are thankful for each day of health and never underestimate the most “normal” of days. To us, no matter how big or small they may seem, every single one of Gavin’s achievement’s is noticed & never taken for granted.