He was…

watching a lawn crew mow the lawn!

       

As excited as I am to move out of this townhome, I will miss have the lawn (and snow) taken care of! We were definitely spoiled in that aspect.

Today, I have dozens of red ribbons covering our kitchen island

 

It’s hard to believe that our Great Strides walk is tomorrow.

Time has been flying by. We move two weeks from today…but I’ve gone from 2 boxes packed to about 8 boxes packed…so I guess I’m making progress.

The next weeks will keep on flyin’ fly by as we stay busy…which includes three upcoming doctor appointments for Gavin.

• May 5th – “regular” CF clinic appt
• May 12th – 15 month wellness check
• May 26th – Infant PFTs

This round of PFTs are being performed because of his large drop in the last test. He was placed on an additional inhaled medication after this drop & our team wants to see if this step gets his numbers back up to where they need to be…or if a stronger measure needs to be taken.

Well, today the weather is sticky & humid as storms pass through…hopefully they’re out of here by this evening as we await the arrival of Gavin’s Aunt Stacy, and his two cousins who are flying in from Indiana to join us on our walk!

???

Any guesses on what he was watching out the window yesterday afternoon?

More than baby banter

It starting to seem like Gavin has a new word every day now. Some of his most recent ones…

• hot dog (aht dah)
• bunny (unnie)
• bike (ike)
• meow (mow)
• water (ahter)
• bird (burd)

He has a vocabulary of 20-25 words now, and it’s fun trying to have a “conversation” with him.

Here’s a few minutes of him showing off his speaking…and throwing…skills…

I don’t feel like editing it down, so you get to watch it all, haha :)

I promise that 99.99% of the time, Gavin is scolded for throwing his food on the floor. But this one time it was just fun to catch his naughtiness on tape :)

And yes, he still calls Casey, Ne-Ne, and not Da-Da for some reason…silly kid!

Bloggie, Blog, Blog!

Another new CF mom blog!

This one by my girl Jamie! Her son Radek is just a couple months younger than Gavin…and is a CUTIE PIE!

See?!? I told you he is CUTEEEEE!

Over the last few weeks, she and I have gotten to know each other pretty well, and I am hoping to get the chance to meet up with her in October.... well I guess we’ll bring the guys with too :)

While Gavin was diagnosed after birth through the newborn screening test, Radek was diagnosed in utero when she was 18 weeks pregnant through a blood screening test. I personally don’t remember ever being offered this…but maybe I was and just said no, not knowing of any family history of any genetic diseases…much less CF.

Same disease, very different story…check it out!

Click HERE to follow their story.

What’s that? Jamie…it’s Florida.  The Keys are calling our names!!! :)

Wordless Wednesday

Diapers, tantrums & baby talk…

have NOT been the only things in my life lately!

(Can I get a woohoo?)

We’re moving in just over two weeks…yes!…and I suppose I should start packing! Once we close I will post some pictures of the new digs.

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Last Saturday, we had a photo shoot for the Minnesota Genetic Counselor’s Association (MNGCA). They are in the process of revamping their website, and asked our family…along with seven others…to come in and share our stories about living with genetic disorders/diseases. Once their new site is up and running I’ll post the link :)

Dan, of Daniel Dunlap Photography, was gracious enough to take a family portrait (& many shots of Gavin!). Please, check out his website by clicking HERE. He was uber friendly, and took some great shots of the entire group!

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This upcoming Saturday, we have our annual Great Strides Walk around Lake Calhoun in Minneapolis. We will have THIRTY people walking with us this year! I cannot wait, and I hope that the weather holds up. We will be wearing the same shirt design as last year (which you can see Gavin wearing in the header of this blog).

It’s not too late to donate! Just click the link below!

We will also be donning red ribbons & carrying red balloons to support seven year old Conner’s fight against CF. He was recently placed in hospice and has been given just months to live. Josh Mogren and I started up the event, Red for Conner, and we have people from all over the world participating!

If you would like to participate, you do not have to be a part of Great Strides. If you see something red, or wear something red…or dress your kiddos up in red…please send me a photo to jenvanderpool@yahoo.com

I am compiling all of the photos to send to the family and will share them all in one place once all pictures are collected. The huge results are just simply amazing!

Click HERE to read more about Conner’s story.

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And, the Parents Magazine Cover Contest. I have an AMAZING CF family. They have all been supporting us through facebook! Today, we are in 10th place out of thousands…but we can do better! It takes just a second to vote, you don’t have to register. Just click “vote” and it will ask you to verify a sentence to avoid spammers. 10 seconds of your time is all it takes.

This would be a tremendous opportunity to spread CF awareness. HUGE opportunity. A FREE opportunity! If we make it past this round, aka win this round, we’d have the chance to go to NYC for the FINALS!

Please click the photo below to go vote!

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And last but not least, the Ambassador’s program for Minnesota Clinical Research. We’re hopefully starting things off with a bang! at the walk this weekend!

We’re a group made up of 3 adults with CF, three families with children who have CF, several CF doctors and the research staff. It’s an idea that the CFF is testing out with three different chapters across the country.

We are here to help families to better understand Clinical Research and why it’s essential for our community. In the next couple of years there will be a huge explosion of new meds, treatments etc. and we NEED them! But without participation in research trials, they’ll never reach the general CF population.

But more on that later…this post is long enough and I’m tired of typing :)

He’s a finalist! For a HUGE contest!

HE WAS SELECTED!

Gavin was selected as one of last weeks FINALISTS in the Parents cover kid contest! THIS WEEK, the kid with the most votes (out of those finalists) will win a chance to go to NYC for the FINALS! AHHH!

PLEASE, PLEASE, PLEASE go vote! You do not have to register, it takes just a few moments of your time! You can vote once a day!

Please send this on to anyone you think would help us out! Friends, family, coworkers etc!

Not only do we have the chance for Gavin to show the world how cute he is, we'd also use the opportunity to talk about Cystic Fibrosis!

Please click the link below...don't forget to come back once a day!

http://photos.parents.com/category/vote/photo/248205

Aren’t you too young for these escapades?

We just finished morning treatments, and since he still isn’t feeling 100% (he has a head cold) I laid him down earlier than normal for his nap. As usual, he sat and talked to himself & his stuffed animals for awhile…and then I heard it…

CLUNK!

What the? I didn’t think much of it at first since he tends to throw his toys out of his crib before falling asleep. And then the cries started.

I ran to the room & realized…he wasn’t in his crib, he was right on the other side of the door…

Well…it’s official. Gavin got out of his crib today. Or should I say tumbled out? Needless to say his crib is on the very lowest level now, where you’d set it for the toddler bed, but we will be leaving the railings up.

Because, at 14 months I’m pretty sure he’s too young for that kind of escapade and far too young to have the ability to get in and out of bed on his own.

Luckily, no apparent bruises or trauma from his fall…and I’m trying to convince him that he still needs his morning nap so he can start feeling better soon…

Boys will be boys.

Welcome…

…to a typical morning of wrestling in our home…

Another…

new blog by a CF mom!

And Mindy lives in the wonderful frozen tundra, just like me! As nice as it is to have friends across the country who are walking in my shoes, it’s just a little bit more comforting to know that she lives so near!

Head on over to Strides for Sax to check out their blog!

CLICK HERE

Practice

We’ve been practicing sitting alone with our Vest lately…

Earlier this week I ordered a new contraption for his nebulizer. One that’s better than the itty bitty elastic strap they send with them in the mail. One that will hopefully hold his nebbies up to his face without them falling off and dumping all over the floor.

So we practice.

And we practice some more

And while at times we’re not a fan of this new process

A little distraction of momma saying, “SAY CHEESE!”

And momma making funny faces resulting in a WTF? look

We relax and keep practicing all by our self

What a brave boy.

Wordless Wednesday

It was all for Gavin…

I swear!…we totally went to the zoo for Gavin’s enjoyment! I just happened to bring my new toy along!

There was barely anyone there today…

…maybe five other families. But I have a feeling that there were some people putting in their community service time…some shady looking characters were cleaning up the place!

Either way, it’s so much fun watching Gavin’s jaw drop in amazement as he checks out all the animals moseying around

We hung out around the bear exhibit for quite some time, he was wide awake and checking out the crowd (aka Gavin and myself) and our little man could hardly handle the excitement

And then there is the Helleckson House…a home built around 1850 that was moved to the park. Built by my peeps, the Norwegians.

 

Walking inside, it’s difficult not to imagine what it might have been like to live there so long ago! A house brimming with kids, cold air seeping through the cracks of the walls in the dead of winter…

And can you even imagine using these…

 

to plow the fields and gather your crops?? No thankyouverymuch!  Call me a city girl, but I’m all good with electricity…heat…and the grocery store!

Because it was so empty today, Gavin was able to run around, much to his heart’s delight

Oh come on…you knew there’d be collecting of sticks!

And we ended the adventure with some giggles while relaxing on a big wooden swing!

Looking back at all the pictures…we might have been out at a zoo but we spent very little time actually looking at the animals…and a whole lot of time running & playing around!

We’re both ecstatic that the weather is finally getting warm…and hopefully staying warm…we have a lot of world to explore!