Baby it’s cold outside!

Hope everyone had a fantastic holiday weekend! We surely did!

While having all three of us sick, away from home, sleeping in one hotel room…was quite the experience, it is always great to get together with family. And right now, both Gavin and I are on antibiotics hoping to kick the sick bugs out of our house quickly!

Gavin most certainly did not lack any attention, in fact, he was the center of attention the majority of the time. A perk to being the only kid around at this point!

We scored a few great deals on Black Friday. I got some glassware and a new pea coat, Gavin got some toys (for Christmas)…and we got a new flat screen tv for our living room. Our prevoius one got damaged in our last move, so we’ve been anxious for the holidays and the price reductions!

Our hotel had a pool and I cannot even begin to describe how much fun Gavin had! He wouldn’t stop jumping off the side of the pool (into Daddy’s arms) and loved practicing his kicking & paddling skills. I think we have a little fish on our hands!

Today, we’re sitting inside, warmed by the heat of the fireplace, and avoiding the blustery cold, snowy weather occurring outside!

Giving.

So Thanksgiving is all about giving…correct?!?

So, how about becoming the best kind of gift giver of all…give the gift of life by becoming an organ donor.

Even Oprah, one of the best gift givers out there, knows how important this is, she’s a donor.

It takes more than just telling someone you’d like to be one, or simply putting it on your driver’s license. Please take a few moments of your time by clicking

HERE

And my fellow Minnesotans, you can just click

HERE

to register. It’s easy, I swear.

I’m beyond being sick and tired (no pun intended) of hearing about Americans, people who live in a county overflowing with medical advancements, dying while they wait.

There are currently more than 90,000 men, women, and children in the United States waiting for a life-saving transplant.

Look at this woman standing with Nate Berkus. 

Her name is Roschelle Ogbuji.

Each of Roschelle’s THREE children perished in a house fire. Two were not able to donate, but she and her husband chose to donate their one year old daughter’s organs when doctors determined there wasn’t anything they could do to save her. I don’t think that you could be any less selfless…or any more inspiring.

If she can face the hopelessness of moving through the pain of living without any of her her children, and can still make the decision to give the gift of life…

then anyone can do it.

So please, this Thanksgiving…I urge you to take a moment of your time to register.

Missing.

I don’t know if it’s because Gavin is getting older, if it’s because of the holidays quickly approaching…but lately, I’ve really missed my dad.

He’s been gone for five years, but it still often feels like it was just an awful dream.

As we were driving home from Gavin’s PFTs last week, I had the urge to call my dad and tell him all about the fantastic results. But oh…I can’t. It was odd, my dad passed several years before Gavin’s birth, so who knows why the thought even crossed my mind.

As I rock Gavin up and down rock star style while singing my dad’s special version of “Rock A Bye Baby” I always wish that it was my dad rocking him, not me. I have countless memories of watching him rocking other giggling babies, singing his silly song…but he’ll never be able to rock my baby.

When Casey and I sit down and discuss what we’ll be getting everyone for Christmas gifts that year…it’s always frank reminder that my dad’s not there. No need to get him a gift anymore.

As Gavin grows, and tries to sneak over to the Christmas tree far too early on Christmas morning…I will always be brought back to my dad’s booming voice commanding us to get back to our rooms.

Ninety-nine percent of the time, I do as my dad asked. To keep on living and not spend time being sad over him being gone. But when I least expect it, I have a total, 100% break down.

I never got the opportunity to have an adult relationship with my dad. To ask his advice about “grown up” sticky situations I have to overcome. He never got the chance to be a grandpa, and let me tell you…he would have been the best grandpa ever.

Every year around the holidays and father’s day the shirts line the store aisles…”best grandpa” or “number one grand dad…” My dad would have worn those tacky shirts with pride. He always wore the interesting shirts my brother and I would pick out for him until the holes outnumbered the amount of fabric left, and I have a feeling that he’d have been even more proud to wear one given to him by Gavin.

I’ll never forget one of the rare times I saw my dad crying. When he told me that he knew he’d never get the chance to walk me down the aisle on my wedding day. To this day, I leave the room when a bride and her dad have their first dance, don’t know if I’ll ever be able to sit through one of those.

So maybe it’s knowing that neither Casey or Gavin will ever get to meet him. Maybe it’s Gavin getting older and realizing how much his family members love him. Maybe it’s the upcoming holidays. Maybe it’s our upcoming wedding…but lately, I really…really…really miss him.

Relax

This last weekend was fantastic. We barely did a thing!

It included a massage (for me!), dinner at our favorite Mexican restaurant, church and decorating the Christmas tree :)

Not too long ago I would have considered that to be one of the most boring weekends ever…but now? It was perfection.

Normally, we wait until after Thanksgiving to set up the tree. Casey kept trying to tell me it was “too early” for Christmas decor…but when he left for the gym I brought it all upstairs and set the majority of it up :) Sneaky, sneaky!

Before hanging the ornaments, I waited for everyone to come home (and to wake up!) And I’m so glad that I did…Gavin had a blast helping me hang everything…although once an ornament was hung up he wanted to take it off and re-hang it over and over and over again!

 

 

With Gavin really starting to understand the holidays, I find myself wanting to celebrate it for as long as possible. He loves pointing to all of the Christmas lights (for those who set up even earlier than us!) as we drive by at night, and yells “Santa!” whenever we see that guy in the big red suit. Hopefully he’ll get a grasp on the true meaning of Christmas as they begin discussing it at the children’s gathering during Sunday morning services!

And a warning to my family, with whom I’ll be celebrating Thanksgiving…when the wine begins to flow, and the competitive card playing gets fierce…watch your language, little man loves to learn new words and repeat them over and over :)

Holiday Shopping

Every year I attempt to start buying gifts “early.” Early meaning…a week or two before Thanksgiving.

And yes, we are some of those crazies that head out shopping on Black Friday.

Each Thanksgiving we head to IA to my aunt’s house…the family digs through the piles of ads displaying the ridiculous deals….we all discuss getting up super early…and no one makes it out before 8 a.m.

But, I am attempting to take advantage of all of the free shipping deals going on, and have been buying some of our gifts online. And before I buy anything I click over to this website…

Many of you probably know about this site, but if not…CHECK IT OUT.

seriously.

So let’s say you’re shopping online at Macy’s, you find some pretty good sales and before you know it, you have filled a virtual shopping cart. Then, in a new tab search “Macy’s” on retailmenot and it pulls up all the promo codes. Whether it’s free shipping, or a percentage off, this site pulls up a ton of options. Some codes work, some don’t…but a green symbol usually means it’s a go. They have codes for over 65,000 stores so it’s worth a look every time you do any online shopping.

I NEVER buy a thing online without searching this site, and 99% of the time I save money from a promo code they’ve posted.

So, while we’re all trying to save a dollar or two this holiday season I thought this might help some of you out! Shop away!

Fun in the snow

Last weekend the Twin Cities got slammed with a snowstorm. Most places got between 10-12 inches.

An hour south, we got this.

Which didn’t even last 12 hours. The snow quickly turned to rain and it all melted away.

Some may think I’m crazy, but I was bummed. If it’s going to be this cold outside, then we might as well have some snow! And I love the snow, especially now that I “work” at home and don’t have to drive anywhere very often!

But, we spent the night before Gavin’s PFTs at my mom’s house, and she had some snow on her deck. My worries about Gavin despising the snow again this year quickly went away. He wouldn’t come inside.

And yes, I was that mom that did not pack snow pants or boots. We didn’t get up there until the late evening, and I had no idea she still had that much snow…so it didn’t even occur to me to bring winter gear. Dumb.

Yes, he did have mittens but refused to wear them. Which definitely didn’t help out this situation…

You may be able to tell that he’s having a total meltdown. He had fallen down, but didn’t want to put his hands in the snow to help him stand back up. But, he still refused to put on mittens…oh well, he’s a Minnesotan, he can handle it!

He spent nearly an hour outside, and broke down when we finally made him come in.

So now I really can’t wait until we get a decent amount of snow on the ground! (and come February all I’ll want is for it to go away!)

Why Gavin does infant PFTs

Do we want to be proactive? Or reactive?

Honestly, why we choose to have Gavin get infant PFTs is as simple as that. We choose to be proactive.

Part of being proactive is trying to catch a potential problem with his health, before it ever happens. Whether it’s something as simple as doing a blood draw or a throat culture every three months…we are constantly trying to stay on the proactive side of the fight…doing our best to stay a step ahead of the game. Heck, the fact that all 50 states are required to test for Cystic Fibrosis through the newborn screening test gives parents today a huge step in the right direction.

Obviously, any fight against an incurable disease is not perfect. There is no possible way that we can prevent everything, to be proactive with every single detail, to be able to predict everything…but infant PFTs have already proven to be a significant benefit in our family’s (almost) two year fight against CF.

Why?

Well, besides the occasional cold, Gavin has never seemed winded, or “mucous-y.” To us, he always seemed to be in great health, his lung function seemed to stay consistent, there didn’t seem to be any difference in the sounds of his lungs through a stethoscope. He never once gave us any reason to believe that something was awry.

Yet, because of infant PFTs we learned that wasn’t the case. His first test resulted in a FEV 0.5 of 125% (a measurement of his lung function). His second test? Those results fell to 94%. Sure, being in the nineties is still above normal…but obviously something was going on. He was in need of more medications, more tweaking of his medical routine. Something had to change or those results may have kept falling.

We adjusted his meds, got a slightly better result for PFTs in round three, adjusted the meds a little more and WHAM! Today, we’re back up to 118%. Not quite where we were when he was six months old, but 118% is pretty darn amazing. And a huge increase from 94%.

But…what if we had never done the PFTs? What if we went to a clinic that didn’t even provide them as an option?

We would have had no clue that his lung function was decreasing until he either got sick, or something drastic happened.

Without those tests, we would have had to react…rather than getting the opportunity to be proactive.

Is it fun having to bring a sleep & food deprived child into the hospital…watching your child get sedated…and having them put them into a machine that performs a breathing test? Obviously not. But, the benefits of the testing far outweighs the minimal risks involved. And because of those tests, we were once again able to stay ahead of the game. We discovered the drop before he began to clearly show a change, before he got sick, before a possible hospitalization.

And as Gavin grows? We will know what his baseline is, it won’t be a guessing game. We aren’t waiting until he is old enough to blow long and hard enough into a machine…assuming that number to be his baseline. We are going to have years and years of numbers & data, allowing us to track the ups and downs his health will take. Teaching us what works…and what doesn’t work for his care. Infant PFTs are providing us incredible amounts of information helping us to stay proactive.

Do I like my son needing to do an hour of breathing treatments a day? Do I like having to hand my son a handful of pills before every meal? Do I like my son needing to go to clinic visits a minimum of once every three months? Do I like my son needing procedures such as infant PFTs every six months? Do I like him needing to be brought into the clinic around his birthday for a day long series of annual tests? Seriously, who would.

BUT, I have made peace with every single one of them.

We are blessed to live in an era where such amazing medical care is possible.

And knowing that one sleepless night and one long morning of testing a couple of times a year could result in years being added to my son’s  life? That the data he provides will help other CF patients in the future? That it gives us a huge opportunity to remain proactive?

The choice for us as parents was obvious. There was no way we would turn away from having Gavin do the procedure. Infant PFTs are an amazing tool that provides a patient (…their parents…their CF team…the CF community…) with priceless information.

I will say, the tweaking of his medications was not the only reason for his high results. We are consistent with his vest treatments. We immediately add an extra treatment a day if he seems to be getting sick, and continue them until he’s back to square one. And just as importantly, he is treated just as any other “normal” child would be treated. He does everything any other “normal” kid would do. We don’t let having CF hold him back.

I cannot tell another parent what to do with their child, nor would I ever want to. But, if you are questioning having the infant PFTs performed on your child…wondering if it’s “worth it…” I personally find an immeasurable amount of comfort in having that data sitting in front of me. No longer wondering…or guessing…that he’s doing “OK.” That he’s “stable.” That he’ll be ok until he’s old enough to do the regular ole PFTs. A comfort in knowing that we, his parents, are doing everything we can to remain proactive.

And remember, we went ahead and had the tests performed with Gavin showing absolutely no visible changes in his health…don’t avoid them because everything seems to be ok.

So until the day that someone can prove to me that infant PFTs are not beneficial? We will keep on truckin’ along…attempting to remain proactive…attempting to stay one step ahead.

Snow Central

We’re getting our first real snowfall today…it’s coming down like crazy as I write this. And to be honest, I’m pretty excited!

This kind of weather reminds me of one of the many perks of living outside of the Twin Cities. At our previous home, it would have taken f-o-r-e-v-e-r for Casey to get home, as traffic would have been horrendous. Even though we get massive amounts of snow each year, come the first couple of snowfalls…everyone seems to have forgotten how to drive in it! But here, traffic jams don’t really exist (and we do live in a fairly large city…just not a large metropolis!) except for the minor back ups around 5 pm when Mayo Clinic employees flood the streets downtown.

Gavin can’t quite get the gist of the snow…he keeps asking me if it’s raining…ha! Close buddy, but not quite!

As the first initial flakes started to fall, he was intrigued and I couldn’t pull him away from our patio doors, but at this point the flakes were melting the instant they hit the ground.

But until the girls leave, I won’t get a chance to bring him outside to test it out…now that it’s actually sticking to the ground.

Hopefully it works out better than last year’s inital attempts!

October 2009

November 2009

Sucker!

Tonight, Gavin got his first sucker…which we dug out of his Halloween stash. He’s had ring pops before, but this was a first!

Needless to say, it was a hit. He carried it around with him until Casey got tired of him getting sticky finger marks all over the family room Gavin was done with it. :)

And the little boy who has a mother that constantly lovingly follows him around taking pictures…has decided that this is the face he needs to make when we yell, “say cheese!”

Oh…and just so you know…this is how all the cool kids relax at home with an evening treat ;)

Ugh

Just a warning, some of this post will be about the digestive side of CF…

Gav has a yucky tummy thing going on (yes, those are the technical terms). He woke up fine this morning, ate breakfast, watched cartoons and played for a bit until the girls got here (he hasn’t figured out the daylight savings time yet, so we’ve been up early!).

About 20 minutes after the girls showed up he had a horrible diaper. It was gross, but I figured he hadn’t digested his food that morning well, and he’d be ok shortly. This was followed by 4 more huge, horrible diapers and was joined by a temp. His temp started at 99, so I gave him tylenol, checked it again about 40 mins later and it was up to 101.5. Now I’ve been adding in ibuprofen, hoping he’ll cool down.

Needless to say, I kind of panicked. We’ve never dealt with tummy issues before. If he has a cold? Stuffy nose? Slight cough? We increase his vest treatments, I can handle that. I know what signs to look for in those situations. I don’t even overstress about him being around germs, he’s been around kids with colds, the sniffles etc… he needs to build up his immune system just like everyone else…but today I was in over my head.

I have no idea what to do with tummy issues, I feel totally out of control and just want him to be able to snuggle & nap. The girls went to their grandma’s for the afternoon and I’ve been scrubbing everything down. I felt horrible asking their mom to leave work and get them, but my priority has to be with my little man. The pediatrician’s office said to just wait and see how he does this afternoon…but I’m paranoid that he’s going to get dehydrated, even though I’ve been trying to push liquids into his system.

This is the kid that never gets a temp, and never acts lethargic. But today he dealt with both. So maybe I overreacted by making the girls leave, but mommy instinct told me that they had to go. That I need to scrub down the house, keep Gav man hydrated, and to lay low.

Just when I think I can handle all this crap (literally!) that CF hands my way, I have a total freak out. Crossing my fingers that he feels better by this afternoon. I hate worrying about him.

Family

Gavin has hit a stage where he is repeating everything we say. And I mean everything!

Every evening, Casey and I watch Wheel of Fortune, and we get pretty competitive with it. The other night, as contestants were attempting to solve the puzzle, Gavin started shouting out random letters…trying to help :) Now, Casey and I are working with him on practicing the alphabet…while we repeated it in the car yesterday, we said A, B, C, D, E…and he said F! We could hardly believe it, it was too cute! What a little smarty pants.

With the holidays quickly approaching, we thought it would be fun for Gavin to actually learn a few names, instead of just pointing

 

Not too shabby! Although getting his full attention is pretty much impossible these days :)

Hooray for babies!

My friend Lacey (many of you know her as Jaxson’s mom), and her husband just went through the agonizingly long process of adopting a little girl from Ukraine.

TONIGHT, her hubby is flying home with Arina! So, so, so excited for their whole family! And especially for Lacey who has four boys and has been longing for a little girl.

Arina (the blog is labeled Makayla because they had intended on changing her name, but decided to keep it instead) has down syndrome, and is a tiny little peanut….she is so cute!

Click HERE to follow her story as she joins her forever family!

Yummy!

I don’t remember much of anything from my ninth grade (or was it eighth grade?) home-ec class…except for one simple recipe.

Pizza Crackers.

They couldn’t be a simpler snack, and last week the girls and I enjoyed making them together.

All you need is Ritz crackers, marinara sauce, shredded cheese and (optional) pepperonis.

Line up your crackers on a broiler pan, topped with aluminum foil…then cover each cracker with some marinara sauce…I use the chunky garden veggie flavors, easy way to sneak in some extra veggies!

Top with some cheese, followed by (optional) pepperonis.

We also added more more cheese on top of the pepperoni slices. Set in oven and broil until the cheese is bubbling and melted.

And you’re all done! That’s it! They’re not fancy, but they are super yummy!

From beginning to end, it takes about 10 minutes! Enjoy!

Dancing Machine

We sure had a blast this year for Halloween! For the first time, Gavin got to go trick or treating! Last year, we just stopped by a couple of houses to show off his costume.

It didn’t take him long to figure out how to get that candy…

He was totally confused by some of our neighbors, who took the opportunity to dress up. The lady in the horns & wig lives across the street from us, and Gavin totally adores her…but he couldn’t figure out who she was until she removed the wig! It took some coaxing from Dad to even get up close to them! Too funny!

He got lots of smiles from our neighbors…we may have only lived here for six months, but our neighborhood is so friendly that everyone knew Gavin by name when he walked up the steps! We sure love where we live!

And while we adults were freezing (it was in the 30s), Gavin refused to wear the “hat” of his costume the majority of the time, ran around like a mad men, and seemed oblivious to the chilly weather!

On Friday night, our local YMCA threw a Halloween party called, Spooktacular, and Gavin had a ball. They had set up a “haunted” path that weaved throughout the darkened halls and up & down the stairways. The hallways were filled with halloween decor and employees dressed in costume handing out candy. The trail ended at the gym, where they provided a dj, several carnival games, coloring tables, as well as popcorn and lemonade.

Grandpa and Grandma Groettum tagged along with us, and we all couldn’t stop laughing at Gavin’s choice of dance moves…the two videos below show off some of his skills! Enjoy!

The one handed move he does in the beginning is him “drumming” (Casey is a drummer)