Then and Now

Last Year

 
This Year

Happy Memorial Day everyone!

Flash Me! Friday

Want to take a peek into someone else's life? Get nosy without being impolite?

Ever wonder...

• What does their laundry room/family room/garage look like?

• Do they make their bed every morning?

• Is my house cleaner or messier than theirs?

Then join us in our weekly, Flash Me! Fridays! Just add your posts URL to the link at the bottom to join along!

This week’s flash…YOUR FRIDGE! (sorry, I forgot to post the topic last night!)

Once again, the recent move has saved my butt. I have been so busy painting, that I haven’t even unpacked that box that contains our zillion magnets and pictures that are typically covering the fridge from top to bottom.

(notice the salt? yep, totally the house of a CFer!)

We’ve only had a couple weeks to shove our fridge (which I 100% hate) full of forgotten leftovers. So today, it’s relatively clean

Noodles leftovers from last night’s dinner. You will always find salsa around our house. I am a huge lover of Mexican food & Casey loves to snack on chips & salsa.

The “adult” shelf. Bud light bottles for Casey…oversized Mike’s Hard Lemonade cans for me. (There might be other adult beverages hiding in the freezer…)

Immediately after snapping the pictures, I threw the blue-topped tupperware contents in the trash. It’s leftover Mexican rice that’s two weeks old. Just the beginning of the many “forgotten” leftovers to come!

So what does your fridge look like? Did you find any surprises?

Add another med to our list…

Yesterday, Gavin and I spent hours outside playing in the sprinkler…

Knowing that bright and early this morning we’d be here…

Gavin had his third round of infant PFTs this morning. And because the little ones are sedated for this procedure, we checked into the hospital at 8 a.m.

Not too difficult to tell that we were in a pediatric section of the hospital…he definitely got hooked up with some toys.

As a parent of a CF child, you have to find humor in any situation…even when you’re little one is being admitted for the day for testing.

Because Gavin needed to be sedated (they don’t use anesthesia, just a med that helps him sleep “more soundly”) there can’t be anything in his belly and he needs to be tired so they don’t have to use a lot of sleeping medication. Which means, we bring him in sleep deprived and food deprived. No food after 2 a.m., only clear liquids until 6 a.m. and try to keep them up late & wake them up early so they are exhausted by the time they get to the hospital.

This part is just as fun for the parents, as it is for the kiddos.

For awhile, we were able to keep him entertained in a small toy area. He wandered the hallways, and waved hi to all the nurses, but before long we hit this point…

The medication to get Gavin sleeping is given to him via a syringe. Every time, until now, he willingly gulped down the meds without a second thought.

Today, not so much. He screamed as I held him tightly while the nurse made him drink three different syringes of foul tasting medication. And because kids his age start to feel funny when the meds kick in, but they’re not sure why/what is going on, they tend to thrash about until they fall asleep. Gavin was no exception here, he cried & thrashed until bam! he was out like a light.

Today’s round of PFTs went uber quickly. Casey and I ran to get coffee and a bagel, and by the time we were back our little guy was back in his “room” sleeping off the meds.

After about 45 minutes of “napping” it was time to wake up. He’s a stomach sleeper, so usually rolling him on his back gets him awake.

That did not work at all this time.

 

(his pulse ox)     

 

So what did he do when we rolled him over onto his back, in an attempt to wake him up?

With this look on his face

And finally, after slurring “Hi Ne-Ne (daddy)” our sluggish little guy started to wake up…notice the Elmo sticker a nurse hooked him up with…with the help of a cool washcloth rubbed on his face.

Watching your kiddo wake up from sedation can seem humorous…well at least if you have our kiddo. (Like I said, you gotta try to find humor in the situation) While he had very little control over his limbs, or head, and slurred his “speech” he managed to have that silly little grin on his face….

or a look of…wtf just happened and why do I feel so crazy?!?!

Before we are allowed to leave, Gavin has to drink & eat something. I brought a bottle vs a sippy cup knowing it would be more comforting. He could barely keep his eyes open, but he slowly chugged it down.

The results were much better than last time. His FEVs 0.5 were back up to well over “normal” at 102% but he does still have some air trapping.

This means that when he fully exhales he still has air “trapped” in his lungs. It’s a very small amount (he had this the last time which is why they had added Mucomyst), and our pulmonologist stated that most clinics would do nothing about it since his FEV’s were so great. But, because they are aggressive with his care they added an inhaler (Flovent) to his regimen of medications. He will use his inhaler 2x a day, right after he completes a vest treatment (will post more on this and how he’ll use it at a later time).

We’re hoping that his trend of adding a new med each time we go in…ceases! I know that as he ages he’ll get more and more meds…but let’s hope this is it for a good long while! (KNOCK ON WOOD!)

Gavin is still out like a light, so I’m going to try to take this time to get some stuff done around the house!

Record Highs

Yesterday, the temps hit record highs. I heard a neighbor announce that their thermometer read 95 degrees. It’s not even June yet people! Two weeks ago we were bundled up in coats & hats visiting the zoo!

Not only was it hot, but it was humid. Typical Minnesota summer weather.

Great for most of us to be outside in shorts and t-shirts, but a little more complicated for a one year old with CF.

Because his body does not reabsorb any salt, he is at higher risk for dehydration. So, unlike other kids that can run around, get sweaty and revamp with a glass of water…it takes a little more precaution on our end.

It includes, adding more salt to his diet (he’ll willingly eat spoonfuls of salt & applesauce, no joke)  and keeping Gatorade on hand to replenish those lost electrolytes. Gosh, he loves the stuff :)

But, even with the heat, I have a little one who cannot stand to be cooped up inside. One who consistently stands at the front door yelling until you head outside.

So, out came the wading pool. I filled it up while he was napping, so the water would warm up a little bit.

We weren’t outside for 10 seconds when Gavin’s eyes lit up. He had never seen this pool before, but he sure knew what to do!

I’ve never met a kid who loves the water more than  he does…

Before long, I realized that my fair skin boy was in desperate need of a hat…

Which was ripped off and thrown into the pool almost immediately.

So out came my favorite style of hat for little ones…

the big floppy kind.

The kind where little faces are barely visible…

The kind that keep my fair skinned, blue eyed boy protected from the sun’s strong rays…

The kind that just make your heart melt from the overwhelming levels of cuteness

Broken rules

On Saturday evening we broke a rule.

We let Gavin stay up way past his bedtime.

It was a beautiful evening, the neighbors were all outside and none of us could drag ourselves inside for even a minute to put him in his crib.

And then, for the first time…

Gavin noticed the moon.

But the funniest part? He had no idea what the moon is/was. He kept yelling, “bawl, bawl, bawl!”

I’m not sure if he ever believed us that the moon might look like a ball, but isn’t one…yet, by the end of the evening he was pointing at it yelling “mooooooo!”

 

And if you’re wondering…no Gavin did not sleep in any later than normal on Sunday, wishful thinking I guess!

It’s all about safety…

at our house.

Yep, like I said. All about safety.

There is no way…

that you can’t call this summer.

I don’t care what the calendar says…

it’s summer weather around here.

I’ve already lost count the number of times Gavin has sat next to the front door screaming until someone takes him outside to play…

Where, in the eyes of a toddler, the magic of bubbles…

makes even a typical afternoon seem extraordinary…

And his recent discovery of the basketball hoop in our new (to us) driveway…

marks the beginning…

of countless…

memories with his Daddy.

And last, but definitely not least…Gavin wants to give a BIG shout out to his Great-Aunt Joly, and his (first) cousins (once removed) Lacey & Gretchen for walking in the Dubuque, IA Great Strides Walk today!

Because of his amazing, loving & supportive family…he has a long, long, long future ahead of him!