Groettum Family

Growing Up is Hard to Do

2012-01-24T11:55:00.001-08:00

Slowly but surely, nearly all the “babyness” has left my little guy and he’s turned into a full blown kid.

He is quick witted, can tell a funny joke and knows how to get himself out of trouble with a funny phrase or look on his face. While he still needs a snuggle from his mama every now and then, we’re enjoying this new stage of parenting.

Gavin is well into potty training and the only time he wears a diaper now is at nighttime. The other day I forgot to change him back into his diaper before a nap, he stayed dry, so that was that, no more diapers during naps – cannot WAIT to stop buying diapers! I obviously have the necessary parenting pictures of him sitting on the potty – but I can spare him the embarrassment of posting them online. I’ve never laughed so hard as the day he sat on the potty deep in thought with his LeapPad – apparently the need to do something while doing your business begins at an early age for boys (and I’m pretty sure this is the only time men multi-task ha!).

He’s also getting more accustomed with his new hockey skates. While he is still timid on the ice, his interest in growing up and playing for the Gophers & the Wild is beginning to trump any trepidations.

We’ve also received the snow that Gavin was anxiously waiting for – several more inches than the pictures below. And whether he has been watching his daddy use the snow blower from a distance (he cannot wait to “grow up and snow blow!”)

Or if he’s been out helping his daddy shovel (I swear I help too!)

The kid is just plain psyched to have all the fun stuff to play in!

Still cannot believe that we’re only a couple of weeks away from him turning three. Time flies when you’re having fun!

Moganko what?

2012-01-10T12:21:00.001-08:00

So here’s the deal. I have this awesome…SERIOUSLY awesome, friend named Josh. Several years ago – not long after Gavin was diagnosed – I felt the need to find some adults living with Cystic Fibrosis. PROOF that life still happened even with this disease. I’m pretty sure we eventually connected after he commented on my blog and I clicked over to his site to see what he was all about (correct me if I’m wrong Josh).

After a few minutes of looking at pictures I realized.

Hey, I know that place he’s standing in!

Hey, he’s wearing a Twin’s jersey.

OMG.

He lives in Minnesota! YES!!!!!!

I don’t know why – but “meeting” adults with CF in different states made them…well, real…but not as real as finding someone living on my turf. While I crave the information all of my adult friends have given me – I have an extra sense of love for Josh and our similar love for our home state.

After a couple years of going back and forth online – a missed meeting when Gavin was in a horrible mood (weird) – we finally got to meet face to face at this years Minnesota Cystic Fibrosis Education Day. I also got to meet his wife and mom – both of which were fantastic individuals.

Now here’s the gist of my story, Josh has created a character named Moganko…

don’t be fooled – it’s really them – just in seriously awesome disguises

Moganko is a puppet that helps kiddos with Cystic Fibrosis understand their disease, what their extra care is for, and why it is so important to keep up with treatments. (But don’t get me wrong – it’s just as much fun to watch as an adult!) Gavin has completely fallen in love with this character. He’s getting old enough to realize that not everyone around him has CF, and seeing someone else go through treatments just like he does has been a huge blessing to our family. Listening to songs/raps about the treatments he does/the medicine he takes/the extra work that is necessary brings a priceless smile to his face. While the life we live may not be normal – Josh & Moganko have helped Gavin realize that he’s not alone and that there are people out there just. like. him.

As a mom, I couldn’t ask for anything better. Life is hard enough – much less with CF – and following Moganko’s journey has made our lives even more enjoyable.

Josh’s goal is to get Moganko teamed up with the Muppets – yep those Muppets - to create awareness for this disease. And we need your help. No, I’m not asking for money – just asking that you take a moment of your time to check out his website

Mogankoforcf.org

AND/OR, take a moment and ‘LIKE’ Moganko for Cystic Fibrosis Awareness on facebook. In both locations, Josh has posted amazing videos, blogs, songs etc. all helping kiddos just like mine live a little more peacefully with this disease. Josh’s goal is to get 2,000 likes on his Facebook page by Thursday as he heads into a (not so secret) meeting that is working toward his goal. Please help him out with a ‘LIKE’ and please SHARE this link on your facebook page. I know my friends will do anything to help my little guy live a long and healthy life – and this is a completely free way to help! Mucho love and thanks in advance!

On a slightly different note – this year’s Great Strides Walk is on May 5th and we will be walking here in Rochester (vs the Twin Cities in years past). If you would like to walk with us – or walk in a different location – please let me know and I will get you all of the information you need!

Welcome 2012!

2012-01-10T11:43:00.001-08:00

So I’m a few days late to welcome in the New Year, but I still cannot believe that 2012 has already arrived. I feel like I blinked and the holidays were over. It didn’t help that I got the awful stomach bug going around just a couple days before Christmas and then Casey getting it on New Years Day. Luckily Gavin never got it – and he had a blast hanging out with his cousins while they were in town

While I was sick in bed, Gavin got to head out on the ice for his first time on skates. He was a little hesitant as his “skates were toooooo big”
(which they were) and the ice was “too slippery!” (duh) but he went out there for the first of many times to come!

And for those of you who noticed the figure skates, no worries – kid just got hooked up with an early birthday present from Grandma & Grandpa Groettum – his first pair of hockey skates! He is beyond excited to get out on the ice again!

If you haven’t caught on. The kid is OBSESSED with hockey. Talks about it constantly. Plays it constantly. Watches it on tv constantly. It has become an evening ritual for a hallway game to begin between dad & son…and it’s an extra bonus when Gavin pulls out his rain boots (which he pretends are skates) and football helmet.

And if that wasn’t enough – lucky kid gets to hang out with his grandpa right in the action during our local high school games

The kid is only two, but already has some major Spartan pride. Guess if we ever move we better stay close to make sure he ends up going to school there!

Also during the holiday break, we took Gavin to see Sesame Street Live. We had second row seats and I don’t think Gavin has ever sat still for that long in his life! He loved the action – but made sure the characters didn’t get too close for comfort :)

Gavin’s other love is “construction work.” Every object can easily turn into a “bammer” (hammer) and when he got a construction guy costume (Melissa and Doug) that came with tools as well as the necessary safety goggles – he was psyched! I let him bang/saw away at a couple pieces of styrofoam from another gift – only to later regret it as I tried to vacuum up a countless number of styrofoam fragments.

I seriously cannot believe that he will be three in just a few weeks. While he still likes to snuggle up with his mama, he’s getting to be such a big boy. He’s funny as heck, talks non stop (wonder where he got that trait from…) and is such a big helper around the house. He is in underwear all day at home – and only wears diapers at night or if we’re busy running around since he has a fear of public toilets – but don’t we all to some extent! :) Last night he informed Casey and me that he would be reading us our nighttime story…

For now I’m going to spend the remainder of naptime at our house enjoying the fresh air…yes, fresh air in January. In Minnesota. It’s 50 degrees here and the windows are open. SO surreal. But looks like today is the end of the warm streak so I’ll live it up while I can.

New Room & Snow!

2011-12-05T12:09:00.001-08:00

This past weekend was an exciting one for our little guy – not only did we get our first major snowfall (looks like this one will stick around) but we surprised him with his new big boy bed!

It’s amazing what a difference a different bed and a little rearranging can do to a room.

The before:

The after:

Neither his dresser or armoire were originally blue. I bought the armoire off craigslist and painted it blue earlier this year (it was an ugly mix of pinks and blues). We received his dresser from Casey’s parents as a present when I was pregnant, and while it matched his crib it did not match his new trundle bed (which I bought off craigslist – perfect condition, handmade & from a very expensive store for less than $100!) so I went ahead and painted it blue. I am thinking about buying new knobs for each, but for now the brown works!

I thought I’d have a tough time moving him out of the only bed he’d ever known – but his excitement trumped any of my worries. Little did he know that this would be his last night in his baby bed…

And his first night in his new big boy bed was a total success! He never fell out and he’s so excited about it that he asks to go to sleep!!!

Like I mentioned before – Gavin also got his other wish this last weekend…snow!

We completed our first “frosty da snowman”

And spent a lot of time “shoveling,” aka moving snow around – but at least he’s getting the idea and little does he know that his lungs are getting a great workout!

The crisp air, and snow covered ground has made it finally seem like Christmas is coming!

Minnesota CF Education Day

2011-11-21T13:16:00.001-08:00

On Saturday, Casey and I spent the day at the University of Minnesota getting our CF learn on :) I apologize that this post is going to be full of information and not the usual “can you believe Gavin said that” and silly pictures! But I know that many family members/friends follow our blog as their method of keeping up with CF news…so here we go…

It was a long day, jammed packed full of information – and while I left exhausted, I am so thrilled that we finally went and my goal is to go to it every year from here on out.

We began the day with a CF research update – and while I knew about a lot of it, some of the information was brand new and extremely interesting. While studying with pigs, the University scientists have discovered that on average, growth hormones are lower in CF patients. It has been debated if all of the growth delay is simply a loss of nutrition and the constant fight against infection that people with CF deal with every day, or if there is another role that CF plays in the deficiency. They have discovered (through the pigs) that the pituitary gland seems to have normal amounts of RNA (which instructs the body to make the growth hormones) but for some reason, the pituitary gland does not respond to stimulation the same way as a “typical” pituitary gland would. The connection between CF and growth hormones has a still complicated, and not yet understood, correlation but they are working on it! Especially because it is proven that bigger kids = bigger lungs = better overall health!

Gavin’s pulmonologist has been doing a ton of study on CF patients under the age of six. Until the age of six, its pretty impossible to get an accurate measurement of lung function. While our clinic does do infant PFTs those numbers are not as accurate as when you actually blow into a PFT machine – and kids generally cannot do that correctly until the age of six. What she has been studying in a chemical called “desmosine” which may correlate with the lung function of CF patients in the first two years of life. In other words – we may someday be able to determine lung function by measuring the amount of desmosine in a young patients sputum and/or urine without having to do any kind of lung functioning test. Awesome, awesome stuff! Gavin participated in this study – which makes it even more exciting!!!

One of the most interesting points for me, came at this beginning point of the day. The doctors mentioned that CF is being studied in many different areas of the University – including dentistry. Why you ask? Good question, and I was initially confused as well. BUT let me try to explain. A chemical called “agmatine” is found in a CF patients sputum (spit) and makes some bugs grow as a biofilm which makes them even more “tolerant” (resisting) of antibiotics even if that particular bacteria is not normally resistant to those antibiotics. And overtime these bacteria become more and more resistant to antibiotics which equals disaster for those with CF and constant lung infections. BUT, a dentist has discovered a peptide, found in our own sputum, that can actually kill the bacteria – yes, a product found by a dentist, in spit (not a created medicine) can possibly kill these otherwise resistant bacteria. Today (Monday) the scientists/doctors in the CF sector of the school are beginning to see if these peptides can “kill” bacterial pneumonia – this is a huge development in the CF world. So while each speaker was only given a small amount of time to speak – it was extremely interesting to learn that scientists all over the school (veterinarians, dentists etc) are working so hard to gain progress against this awful, awful disease.

Not surprisingly, my favorite part of the day was when one of the doctors began discussing the Vertex drugs. It was also an eye opener that Gavin is really in a small number of CF patients that have the G551d mutation (Just 3-4% of the 30,000 US population). I am constantly torn between this state of wanting to scream my excitement and containing myself with the realization that we’re not yet there for 90+ percent of the CF population. But, when a reputable doctor stood on a podium, in a room full of people dedicated in the fight against this disease, and told us that he was in awe – floored by – the results of VX-770 (Kalydeco)…I wanted to run on stage and give him a hug. Not only was lung function increasing by 10 percent in just TWO weeks, sodium chloride levels were dropping 50 levels into normal readings. Those of you have followed our story may remember Gavin getting a sweat test when he was a newborn. They place a chemical on the skin that causes the body to sweat in that small area and they then test the sodium chloride/salt in that sweat. A reading over 60 is a positive CF result, Gavin’s was over 100 (does not measure severity of the disease). Just think, if Gavin’s number dropped by FIFTY like the doctor mentioned, he would be in normal numbers. Un-be-liev-able. And when I spoke to this doctor during a break, he said that life for my two year old is going to be different. Those testing this drug have lived years with CF, and because of that they have irreparable lung damage – while someone like Gavin does not have any lung damage and is going to be starting with great, pink lungs. Instead of bringing back numbers the goal is going to be keeping lung function high, and to get his body working normally before the damage occurs. Proactive instead of reactive (my favorite saying when it comes to his CF care). I honestly could have spent the entire day talking about Vertex and nothing else…but the hour I did get was pretty amazing. We got to learn how they decided on the “right” dosage – how they discover what dosage is “too much” and how they structure the research categories…fascinating stuff and I am in awe of those who dedicate their lives to finding the necessary control, if not a cure, of this disease.

The news on 809 was also promising – a lot of what they are doing is trying to figure out what dosage of 809 works correctly with what dosage of 770. They are learning that a higher dosage of 770 is needed when combining the two meds to get the desired results with the Ddf508 mutations (vs a lower needed dosage for those with G551d and only 770 alone)…but those balances are all still being tested. So for those of you worried that 809 “isn’t working” please keep your hopes up. They are definitely still tinkering around with the mixes to get the results they need – they are on the right track. It’s not that it isn’t working, it’s that they are trying to figure out how much of the med is needed - and what balance between the two meds are needed - to get things working. Seriously, very close! I can definitely send more of the info I learned along to anyone curious about more on the 809 studies!

On a side note - more and more drug companies are coming on board with finding these correctors and potentiators (809 and 770 respectively) – sadly its because many of these companies are seeing the “dollar signs” that weren’t there before – but we’ll take all the help we can get now!

We learned more about nutrition – the importance of taking enzymes – the importance with staying in close contact with Gavin’s dietician to continue checking his BMI and keeping it matched up with his enzyme intake etc. We learned about the necessity to stay committed to treatments. The necessity to keep on track with visiting the CF clinic at least four times a year and getting PFTs at least twice a year for those who are able (older than 6). That yes, it can be a pain in the butt to “fit in” the time to get to clinic but that above all, HEALTH is the most important aspect of all.

Lunchtime was fun – I got to meet two other families with young CF children. We also sat at a table with a nurse who had performed Gavin’s sweat tests nearly 3 years ago. She remembered us AND remembered Gavin’s name without prompt. This is exactly why I call our team family. They care about us, remember us, and truly give a damn about our lives outside the CF world. Our team poured over our wedding album – which they had repeatedly asked for. And guess what – the only picture Gavin’s pulmonologist showed during her talks was of…yep, you guessed it…our one and only Gavin! And to be honest – a huge reason why a lot of the information we learned that day was a refresher is because his doctor is so amazing. Whenever we go in she thoroughly explains everything we’re doing, why we’re doing it – what we’ll do if it doesn’t work, and how to confront different circumstances in life. She has an amazing ability to explain things in terms we understand and there is something to be said when your two year old gets excited to see their doctor! But ok, enough gushing!

After lunch we got to see the one and only Josh Mogren perform. After two years of communication between computers and cell phones I finally got to meet the guy face to face. We also got to meet Moganko! He performed with a local a cappella group and they performed songs they created for CF kids about taking their medications/pills and keeping up with their help. I would love to tell you more – but what we got was a special preview – Josh has not released most of what we’ve heard yet…but once he does you know that I’ll share it there! He is definitely someone I cannot imagine living this CF life without – I cannot count the number of times he has been there with amazing advice, whether its about CF or just life in general. The guy is good stuff :)

We also got to hear from a panel of three adults living with Cystic Fibrosis. It was definitely a great opportunity to pick their brains, and to get a grasp of what Gavin will feel/experience as he ages. Some of it was heartbreaking, yes – but I think hearing them will make me a better parent. They expressed their feelings about being pushed to do treatments, to step back and let them live and how to face many situations – one of the best parts of the entire day. Definitely priceless material!

The last part of our day divided the group into discussions about adults or pediatrics. For obvious reasons we chose to listen to the talks about pediatrics :) Gavin’s pulmonologist lead a talk about many of the different medications/antiobiotics being used right now. I won’t get into details on most of them – but it was a nice refresher and great to hear why certain meds cannot be mixed and why some can. Also great to hear more about side affects to look out for. Overall just some great info! A small part of the day was spent discussing networking between the parents – I couldn’t believe how many parents didn’t network at all. The team did not bring up CysticLife but I sure did! I honestly cannot imagine where I would be right now without the support of my CF family. They are the people I don’t have to explain myself to, they just ‘get it.’ No one but them truly understands our day to day life, and the emotions that come along with it.

All in all it was a long, but amazing day. Kudos to the CF team who gave up another weekend of their time to help out so many CF families – especially after many of them spent many days in Anaheim at the national conference. We seriously appreciate the extra steps they take in keeping us informed and well educated on the best CF care possible.

Oh, I cannot believe I almost forgot this. Guess what. Our clinic was ranked NUMBER ONE…yep, NUMBER ONE in the nation for FEV1 levels (lung function) in pediatrics ages 6-12. Amazing! We are so very, very, very blessed!

And before I leave you…

This month alone, I am aware of SEVEN individuals that have lost their fight against Cystic Fibrosis – one of them being only a few days old. Which is why I believe it is beyond important for every.single.CF parent/patient/significant other to attend some sort of educational conference to learn about this disease. When we learn, we can teach. When we teach we gain interest. When there is interest there are donations. When there are donations RESEARCH IS FUNDED and LIVES ARE EXTENDED. It begins with US. The parents. The patients. The caregivers. It is OUR responsibility to step in and learn about what is happening, what will happen, and what we can do to better the lives of those living with this disease every single day.

Clinic Visit Fall 2011

2011-11-17T17:17:00.001-08:00

It was a very early morning for our family today – I try to get Gavin in for the first available appointments so I know we won’t spend a lot of time waiting and before the waiting area fills with kids.

After a few minutes of checking out the scenery (our clinic just moved to a brand new location & we’d only been there once before)

…watching cartoons on a submarine bench

…and playing with a oversized marble maze…

…we got to visit with Gavin’s medical team. And it was an outstanding visit! His weight is good, his height is good and his cuteness levels are off the charts. As long as things go well, we don’t have to go back until February when Gavin goes in for a big day of annual testing.

Gavin’s entire medical team is made up of women – but today he was thrown for a loop. While nearly his entire team joined us in our “room,” his pulmonologist arrived with a medical student - who is a…man! Gavin hid underneath a child sized table only peering out if his favorite “Dr. Dadunaaaaaaa!” asked him a question or needed to listen to his heart & lungs “wit her stefastope.” I just asked him if he would nicer to his doctor’s “helper” next time and I was told, “I think about it.”

He proudly told everyone that he wears “big boy underwears” and that he is asking Santa for video games and socks. Yep, socks. He also informed them that his favorite store is Lowes (thanks to the kid carts with steering wheels) and that when he turns three his cousin Grant will be four.

We got a little information on the latest Vertex news – but because the Minnesota CF Education day is this upcoming Saturday we’ll be getting a lot of information there. His pulmonologist did say, “this is very exciting stuff” so we’ll take that as a good omen for the news we’ll hear in a couple days. Our clinic is number one in the country (by 10%) for lung function in ages 6-12 – just another reminder why we make the 1.5 hour drive to the Twin Cities vs. seeing a doctor at Mayo Clinic just five minutes from our house. No drive is too far to get our child seen at one of the top three CF centers in the country.

The entire family got our flu shots while we were there – hopefully saving us some copays! While Gavin tweaked out about the shot, he did think it was pretty cool that all three of us received matching Snoopy stickers! And a note about tweaking out – Gavin’s least favorite part of the entire experience is getting weighed. He refuses to stand on the scale without me, but calmly listens to everything else he has to do…that kid…

After clinic I decided to follow the advice of several other CF mama friends – do something fun! So we made the quick trip to St. Paul to visit the Children’s Museum. When we left Gavin told me it was the best day ever :)

and it took just five minutes in the car for him to totally pass out.

I’m still having trouble believing that Thanksgiving is just a week away. Time is flying by much too quickly – and the lack of snow makes it difficult to relate to the holidays. We woke up to 15 degree weather – if it’s going to be that cold, can we please have some white stuff to play in (but after we get back from a road trip for Turkey Day Mother Nature – thanks!)

Fall Family Picture Fun

2011-11-09T07:18:00.001-08:00

We are lucky to have an amazing photographer living across the street from us (double bonus – our boys are 1 day apart and best buddies). Once I took a look at some of the pictures she posted on facebook, I knew I needed her to take our family fall portraits! Thank you Allison, we love them!

I saved my favorites for Christmas cards and gifts but here are some of the highlights…

candids: love them, my little guy’s silly personality shines through

“Hold my hands and swingggggggg me!”

carefully watching for oncoming cars

gangsta?!?

Hilarious personality with this kid – love him & those dimples

do you see this devilish look…keeps us on our toes!

half our battle was keeping him still – boy loves to run

case in point…LOVES to run. CF you goin’ downnnn!

in love with my little family…

especially where a hunt for the perfect stick trumps the hunt for a perfect pic!

Life Changing

2011-11-04T10:47:00.001-07:00

Again, it has been far too long since I have posted. Life is good, but moving much too quickly. It’s hard to believe that November is already here – our first snowfall will probably get me back in tune with the season.

Over the last couple of weeks, absolutely fantastic news has been coming from both the Cystic Fibrosis Foundation and Vertex. Vertex is the drug company producing the drugs VX-770 (now known as Kalydeco) and VX-809…with the up and coming drug VX-661. Kalydeco is the drug that is aimed directly toward Gavin’s rare genetic mutation – only 3-4% of the general CF population has this mutation. I am going to try to explain what this drug is, what is does etc.

The genetic mutation G551d produces mutated cells, not allowing his body to regulate salt & water. This is what causes the build up of mucus that blocks the performance of major organs and also creates a breeding ground for bacteria in his lungs. Unlike the other 1500 mutations, these mutated cells create everything they need to function AND everything is right up against the cell wall wanting to function – but his cells do not have a channel that opens up allowing the cell to function. Kalydeco opens up that necessary channel – and approx. 15-20% of those cells need to function normally in order for his body to function normally. So in other words, with the cell now having an open channel – thanks to Kalydeco – his cells should begin to work like a “normal” cell. This is NOT A CURE. Similar to an inhaler controlling asthma or insulin controlling diabetes, Kalydeco will hopefully control Gavin’s specific form of Cystic Fibrosis. Gavin is NOT on the medication as of yet. It is currently in the hands of the FDA awaiting approval. There is a pediatric study (ages 2-5) happening next year, and we are hoping to get Gavin in on this study once they start enrollment.

The majority of CFers (98%) have the genetic mutation dF508 (most often both mutations are this form – Gavin has dF508 and G551d) which creates a mutated cell that also creates everything needed to function, BUT the components are “stuck” in the center of the cell AND there is not a channel allowing the cell to function. So, the contents need a drug to pull them to the cell wall (hoping that 809 and/or 661 can do this) AND they need a drug to create a channel. This is where the new hope of a combination of 809 AND 661 combined with Kalydeco will allow their cells to function. 809 alone has not been doing “enough” on its own to do all the necessary work – which is why scientists are attempting to tweak the drug and/or combine it with another to “work.”

Many genetic mutations resulting in CF create cells whose contents are also mutated – meaning that, it’s contents won’t/can’t even perform correctly with a working channel. This is why G551d is considered the most curable/controllable followed by dF508 - at least those cells have the possibility of functioning correctly.

Something I learned fairly recently, as a carrier of a CF genetic mutation – only around HALF of my cells perform normally, and I obviously do not have any symptoms of the disease. Just proof that you don’t need 100% function to be “normal!”

Hopefully that made sense! We are obviously beyond excited to have all of this happening right now. As we speak, the National CFF conference is happening in Anaheim and there are four THOUSAND scientists there learning/teaching/expanding their horizons. As another CF mom said, I wish I could hug & kiss each one of them for taking their skills and putting them toward curing…or at least controlling…this disease.

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On a different note – many people have been asking me lately what our chances are of having another baby with CF (no we’re not there yet!!) The chances are 25%. In order for someone to be born with Cystic Fibrosis, each parent has to “give” one mutated gene. Because each parent who is a carrier has one typical gene, and one mutated gene here is the break down.

BABY A) Good Gene from Dad AND Good Gene from Mom = NO CF (not even a carrier)
BABY B) Good Gene from Dad AND Bad Gene from Mom = CF carrier
BABY C) Bad Gene from Dad AND Good Gene from Mom = CF carrier
BABY D) Bad Gene from Dad AND Bad Gene from Mom = Cystic Fibrosis

25% chance the baby does not have any mutated gene
50% chance the baby is a carrier of the gene
25% chance the baby has cystic fibrosis

Children born today are told (obviously) if they have Cystic Fibrosis but they are ALSO told if they are just a carrier of the disease. And not just for CF, but for thousands and thousands of diseases – and these results are from the newborn screening test where a small sample of blood is tested by the state shortly after birth. Because children are now told what they are carriers of – when they reach a point in their life when they want to have a child with someone, they can knowingly discuss whether or not they are carriers of the same disease and can discuss their “plan of action” BEFORE they conceive a child. Pretty amazing stuff!

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Life here has been fairly typical lately (knock on wood). We have dived into potty training and Gavin was doing fantastic. But, a couple of weeks ago he was put on an antibiotic and those typically upset his tummy. So instead of dealing with all sorts of accidents, we put him back in diapers for the duration of the med. Tomorrow, we’re back to potty training – hopefully we can get back to just one accident, if any a day! He’s slightly scared of public toilets after one in a restaurant flushed while he was still on it – so hopefully we can get over that!

Somehow Halloween season came and quickly went. We had a ball picking out our pumpkins and playing around at the pumpkin patch,

but of course when it came to carving them Gavin wanted nothing to do with it - “too gross!” But would proudly show off “his” carved Mickey pumpkin to anyone at our house! We also thought that he made the most handsome Monkey ever :) And he was a pro at Trick or Treating! It’s so much more fun being the parents just watching their kid trick or treat versus bringing them to each and every door!

He is also very into sports of any kind…see below.

who needs a blanky when you can sleep with a football?

We took him to several local high school football games this fall (one of Casey’s best friends is the coach) and we also took him to a Golden Gopher Hockey game with Grandpa and Grandma.

Whenever there is a game on tv he wants to know “what color do we want to win?” He still gets confused as to why the Gophers/Vikings/Wild etc. change the color of their uniforms due to the game being home or away, but he’s catching on! He also loves to yell at the refs alongside his daddy – one of his favorite sayings, “That was an awful call!!!” Apple doesn’t fall far from the tree.

We are hoping to get him his first pair of hockey skates in the next few days, we cannot wait to get him out on the ice. Crossing our fingers that he doesn’t decide it’s too scary!

Well, I really need to get my camera fixed because new quality pics (vs these from my phone) will motivate me to actually blog more often!

Just the usual craziness…

2011-10-10T08:49:00.001-07:00

When you spend countless hours sitting on the couch with your kiddo while they do two breathing treatments a day – sometimes you just have to act ridiculous to help the time pass by quickly :)

Why Hello There Fall

2011-10-03T11:16:00.001-07:00

Happy October!!!

And yes, I managed to miss the entire month of September! I’m so mad at myself that I may go back and insert posts so that I can still reread those stories in the future!

My DSLR isn’t working – something to do with the lens, and I haven’t taken the time to bring it in and get fixed – thus the lack of blog posts. Trying to catch up…here a couple of tidbits from the past few days…

This past weekend Casey and I went to a friend’s wedding up in the Twin Cities, and Gavin had a busy weekend with his Grandpa and Grandma. Needless to say, after too much fun for the parents and kiddo, Sunday was full of naps – including an impromptu nap amidst the fun of play doh…

We’ve been blessed with some amazing weather over the last week. Warm enough to have the windows open during the day, and cool at night resulting in perfect sleeping weather. We’ve been spending as much as possible outside enjoying the 80 degree sunny days (because we all know that snow is most likely just a few weeks away) but we’ve also spent plenty of time snuggling under blankets in the cool evenings.

Lately, Gavin and Louie have become the best of pals. Constantly wrestling, playing fetch and snuggling…

It is so much fun to watch the two of them play together – and makes it clear that every little boy should have a dog! What a relationship those two have!

And to leave you for the day – and I promise not another month - We were able to enjoy an unplanned afternoon away from daycare and spent some time running around the local zoo!

Happy Fall!

Wordless Wednesday

2011-08-10T08:42:00.001-07:00

Hair today, Gone tomorrow.

2011-08-05T08:13:00.001-07:00

The wedding has come and gone – and so have my split ends.

Last night, I finally got the guts to chop off my locks. I went from having hair three inches below my shoulders to this!

For (nearly) 26 years of my life, I lived with super straight hair. I used to give my college roommates a hard time about how long it took them to straighten their hair – I hopped out of the shower, blow dried it and was good to go!

But, after having Gavin my hair did a complete 180. I had to completely relearn how to style it. But, over the last couple of years I’ve worn it longer – mostly due to our recent wedding – which kept it looking fairly straight. My stylist kept laughing as she cut – the shorter it got the more my curl bounced up!

Now, I don’t have to do a thing when I get out of the shower – a quick towel dry and wham, I’m ready for the day!

I’m excited to run out and get some new hair product to go along with the new ‘do. Luckily, I received multiple “get it free” coupons in the mail this week for all sorts of products (thanks to mybargainbuddy.com – find her on facebook!) so I won’t have to spend a dime!

Weekday Date Night

2011-08-04T07:52:00.001-07:00

I got to go on a date with someone other than my husband last night. And while he’s only about three feet tall and about sixteen and a half years away from being legal, we had a blast!

Earlier in the day, I told Gavin that Daddy was working late so he could pick what we could do post daycare hours. He quickly replied, “Take mama to Applebees to eat chicken!” Melt my heart a little more buddy!

He excitedly ordered his own meal, a Joe Mauer (kiddie cocktail) and chicken tenders wit’ fwench fwies. And he ate every.single.bite! Music to this CF mama’s ears.

After our meal he asked to go to the play area (the restaurant is in the mall), but when we got there all the kids were well under two years of age. After about 10 minutes of playing he ran to me and said, “dey all babies mama. I too big for dis today.” While I would never bribe him with candy from a vending machine – ok, ok I totally did – we headed off to a couple stores and got him a bunch of clothes for next summer. This was the first time I had brought him shopping without a stroller - I wasn’t able to tie him down! My little tornado actually managed to keep his fingers off the clothing displays, didn’t scream at me to “’urry up!” and I was smart enough to head to the store constantly running cartoons until the very end.

By the time we got home, he was spent. A full belly, with energy burned at the play area and from just walking around the mall. We curled up on the couch to watch the “silly little guys” – aka Despicable Me – and he fell asleep giggling at the little yellow minions.

I think I’m going to have to go dates with this short little guy more often. He’s fun, he makes me laugh, and his meal choices are seriously cheap!

A Night Out

2011-08-03T10:46:00.001-07:00

Last night, our neighborhood celebrated national night out at our home. With a block as social as ours – it wasn’t long before our driveway was filled with people. Sweaty people. Yikes, was it humid!

In typical potluck style, the tables were quickly covered with an arrangement of different foods.

By registering with the national program, the local emergency crews “may” show up – and because our neighborhood has gatherings all summer long, I really wanted something that would stand out from the other parties. So, I contacted the police department by email and apparently nagged him enough because low and behold…

We got not only a large fire truck, but a police car as well. They were all great – the kids had a blast checking out the cop car, and they all commented on how uncomfortable the back seat was - hopefully more of a deterrent to keep them out of the backseat in the future!

The firemen showed everyone the inside of the truck – as well as all of the tools on the outside. At first Gavin was hesitant to get close to such a large vehicle – but in the end he sobbed as they pulled away.

We sure are blessed to have such fantastic neighbors!

Enjoying the fruits (and veggies) of summer.

2011-08-01T07:55:00.001-07:00

It’s been an odd summer season, weather wise. With a long & cool spring, record breaking highs, & torrential winds & rains –our garden is finally turning out the larger vegetables.

Case in point.

The jalapenos, peppers, lettuce, cucumbers, herbs and tomatoes are growing in leaps and bounds – every morning Gavin and I tiptoe across the dew covered grass to see what can be picked and eaten that day. The shrieks of, “Mama, that ‘mato turned red! We can pick ‘em!” is a far better wake up call than the strongest of coffees could give me.

And for what we don’t grow in our backyard, we pick up at our local farmer’s market. Even as the market is shadowed by the towering buildings of downtown - there is something rustic about shopping for local vegetables from nearby farm lands. The array of vendors is impressive – from friendly Amish with home baked goods to immigrants who barely speak English, nodding happily as you check out their produce. I still cannot believe that the first time we truly got to eat local sweet corn was at the very end of July this year!

This little boy could barely contain his excitement for the stuff, impatiently waiting for it to cool off enough for him to eat. While his technique still misses about half the kernels, he has moved on to a full ear, unlike last year!

And to top off our Sunday of fresh food – my little chef and I whipped up some strawberry smoothies. Far better – and cheaper – than we could have gotten at any store.

Probably because they were made with love.

The rush before the end.

2011-07-31T20:19:00.001-07:00

With the arrival of August – there comes an innate rush to fill every spare moment with as much summer fun as possible. The sprinkler gets pulled back out of the garage, the pool has once again found its permanent spot on our back deck, and we run around barefoot enjoying the heat of the asphalt mixed with the coolness of the humidity drenched grass.

It’s a harsh reminder that we can’t take these warm months for granted. As Casey and I enjoyed an adult night out on Saturday, we relaxed on a patio downtown relishing in the heat. While sipping my ice cold sangria, I mentioned that in three months its quite possible that we’ll have snow.

And with the end of summer, comes a Midwest love – county fairs. Yes, Margaux & Jamie - under the lights of the corn tower, our county gathers together for greasy food, 4H fun, blue ribbon pies and cheap thrill rides. Somewhere between childhood and adulthood its easy to forget the excitement of a small fair – you land in a position where you obviously have things to do and people to see, and are much too busy for such a corny (no pun intended) affair. Yet, nothing matches the excitement I get as a parent when I see pure thrill in my child’s eyes. He doesn’t see sweaty people wearing much too little clothing. He doesn’t see the dirt and grime. He doesn’t wonder who in their right mind would travel around with a carnival just to power up the rides. He sees the bright lights, he feels the excitement, and there is magic in the air.

Cautiously keeping our eyes out for cow pies and trying not to breathe through our noses, we ventured through the animal barns

We laughed along with the carnies and hopped on the rides – grinning ear to ear at the enjoyment in Gavin’s smile and eyes.

Amidst the rides, my little man continuously glanced at the fun houses. Daddy & son hopped in the first one without decor doused in scantily clad women or scary looking creatures.

And as Gavin flew down the slide out of control (no worries, Grandpa was there to catch him) – Casey realized that any attempt at looking “cool” would be impossible & cautiously slid down to the bottom.

We blew through five dollar bills trying to allow Gavin to win his first prize in a ball toss

But never won a thing until we discovered an “everybody wins every time” booth where Gavin magically maneuvered his pole above a magnetic fish, and won a prize of his choice – a camouflaged print shark.

And is there anything more adorable than outright giggles from a two year old, feeling the sandpaper tongue of a goat on his treat covered palms?

I think not.

When we asked our two year old, towheaded little boy what he’d like to eat for dinner? Mini donuts and french fries, he replied.

And mini donuts and french fries was exactly what he got.

magical memories. hopefully forever ingrained in his mind.

Whew!

2011-07-21T12:36:00.001-07:00

We survived a major heat wave! Not only was it in the upper 90s, but the humidity was at 82% and above – leaving us with a heat index of 119 degrees! Yikes & no thank you mother nature!

This is what my windows looked like in the morning…

Just stepping outside made you feel like you were dripping in sweat. To top it off, two days ago our smoke alarms started going off – for seemingly no reason at all. Of course – it was during naptime and all of the kids were dead asleep. This resulted in a 6 month old, a 14 month old, and a 2 year old waking up and screaming at the top of their lungs out of exhaustion & fear. I couldn’t get the alarms to turn off, and because I run a daycare I figured it was better to be safe than sorry. I brought the kids outside – ugh, in the heat – and called the general police line to tell them the problem. Umm – they sent not one, not two, but THREE full sized fire trucks, an EMT and a third vehicle. Even after explaining to the lady who answered the phone that there wasn’t any smoke/fire and that I just needed someone to walk through my house – our street was filled with emergency vehicles. As the neighborhood kids poured into the street trying to figure out what all the excitement was about, I ran the daycare kids to the neighbors to get them back into air conditioning (thank you Kim!). Just standing there, I was doused in sweat – the poor fireman who stayed to walk through my home were in their full gear – cannot imagine how hot that was! Luckily – they believed that the alarms went off because of the extreme heat & humidity and we were cleared to go back into our home.

I’d be a-ok with that not happening during daycare hours – much less nap hours – ever again!

Because wading pools are not allowed at daycares in Minnesota – we don’t have ours out much anymore. But earlier this week when the kiddos went home early we pulled it out and put it on the deck. The patio umbrella worked perfectly to shade Gavin’s hang out area and we blissfully survived the heat for thirty minutes in cold “pool” water!

Just like the winter months – I have to get creative with finding indoor activities when the weather is too extreme for much outdoor activity. Luckily, Target’s dollar section is full of educational fun right now, and I found this alphabet bingo game. I replaced the lightweight cardboard playing pieces with pennies and the kiddos have really enjoyed this game a ton. I tend to just called out a letter, as they aren’t quite at an age to solve the puzzles on the game cards – but even my two year old caught on to the concept quickly!

Last night we went to a juggling show downtown – Gavin loved it but this was the only picture he “allowed” me to take

Welp – guess his days of loving the camera & posing are coming to an abrupt end.

The weekend recap.

2011-07-13T11:48:00.001-07:00

I had the best weekend of my life.

I still can’t believe that it’s over, that we’re finally married, and that somehow I’m supposed to go back to “normal” life now!

As my best friend Sarah so lovingly stated, “Jen you’re so anal about details that I know it will turn out perfectly.” And that it did :) Not one thing went wrong!

The partying started on Thursday when Margaux and Jamie came into town. They are both CF mamas, and I had never met either one face to face. It was so surreal walking around downtown with them, but I loved it! And Jamie was the most active 8 month pregnant lady I have ever met in my life, she was wearing shoes I can’t wear right now! We headed out to a local restaurant patio and enjoyed each other’s company before the true craziness began!

Friday morning began bright & early. Casey told everyone that I had never woken up that early in the entire five years we’ve been together. Ha! But I wanted to get those last minute tasks done before Gavin woke up, and I did, I had everything completed by 7:45 am. And from that point on I just enjoyed the time – and like many warned me, it flew by so quickly. I was once again spoiled rotten with an awesome shower, surrounded by friends and family. My mother’s maiden name is Heise, and there are depression era glassware sets that are highly collectible with the same name. My grandmother gave me the first Heise glass she ever bought, a six piece plate set. Several other family members gave me matching pieces to that set, and I was also given many household goods. Between all of my shower gifts and our wedding gifts, our house is overflowing!

After a beautiful rehearsal

We filled our bellies with some Mexican food at a fantastic groom’s dinner. It was so fun to be able to socialize with everyone before the chaos of the wedding reception!

CF mamas, plus my MOH – all became instant friends!

Saturday morning began at my friend Erin’s hair salon, Ooh La La, with bagels, fruit and mimosa's provided by the best maid of honor ever, my cousin Lacey. Not only is she my cousin – she is also like a sister to me, and one of my best friends.

Once hair was completed, we headed back to my home to finish getting ready before heading off to the church. Putting on my dress & getting some time to hang out with my bridesmaids/friends before the ceremony was a time I’ll never forget!

From that point on – everything moved so quickly. We had a fantastic ceremony – and yes, Casey and I totally high fived when he pronounced us husband and wife. The bridal party hit up a party bus where we took more pictures and overtook a local bar before heading to the reception. The reception was a riot, and I was thrilled to have all of our family & friends in one location having a blast. The photog and other friends took many pictures of the reception, once I get those arranged I will post them here – but here’s a couple that made me smile!

A sneak peek at our WEDDING DAY!

2011-07-10T18:40:00.001-07:00

Catching Up

2011-07-01T10:54:00.001-07:00

I have started a new blog post about a dozen times – each time I’ve been interrupted by kids, the phone…life. So here we go, trying to catch up on the last couple of weeks!

We’ve made funny faces through the patio door windows
- dirty windows just means the house is loved!

Dug out a dead bush with Daddy

Painted masks with Crayola Paint Brush Pens –
seriously a genius idea on their part, no mess!

The lack of sunshine has slowed our garden – but the constant rain
kept them fed!

Examined everything in our yard with a magnifying glass

We dealt with weeks of rain by puddle jumping

His new obsession – taking pictures with his mama

Eating pizza with the necessary army helmet-thanks Caleb!

Hours and hours of playing Lucky Duck

And getting out his mower to help Daddy is a must.

We’ve been so busy enjoying summer (that has finally arrived – hello sunshine, high temps and humidity!)
that wedding planning continuously fell to the bottom of the priority list
– and that decision will kick my butt for the next week or so :)

I wish…

2011-06-16T11:10:00.001-07:00

…I was this photogenic.

Random.

2011-06-09T10:46:00.001-07:00

I am sad that I haven’t been able to update our family blog as often as I’d like – but I love that it’s because we’ve been too busy enjoying summer life!

The first days of the week were spent in 100+ degree weather – typical Minnesota, we went from 50/60 and rainy right on up to 100. But I can’t complain, being able to walk barefoot in shorts and not even thinking about a jacket is perfect! Then today we woke up to weather in the upper 50s – a forty degree difference in two days, welcome to the Midwest! To survive the heat, we pulled out the slip n’ slide & sprinkler, and the wading pool once the daycare kids left – but honestly, the majority of it was spent indoors in the air conditioning! Gavin can easily get dehydrated, so we’re very cautious in overwhelming heat!

Gavin has been such a blast this summer. He really is a preschooler now, and extremely independent (hmm, wonder where he gets that from). He’s counting, singing the alphabet, starting to spell (I know right!), and has decided he likes to beat box – seriously the cutest/funniest thing ever. When he hears a song he’s familiar with, he attempts to sing along. We do sing nursery rhymes and such around here – but it cracks me up that he’s more familiar with the music Casey and I listen to on a normal basis – he loves him some Kings of Leon! He also loves to dance and attempts to “perform” along with the performers on Dancing with the Stars and So You Think You Can Dance. He is constantly saying things that crack Casey and me up – like the other night at dinner when out of the blue he told us that he “never wants to grow tall like Mama & Daddy , I wanna be little forever!” – I wish that too buddy!

Today marks the one month countdown to our wedding. I sometimes freak out about getting things done, but then remind myself that 90% of it is done. Little details here and there need to be looked after, but the big stuff is ready to go! After a lifetime of wondering who I’ll marry, what it will look like, how old I’ll be etc. It’s crazy to think that the day is almost here, and that in a blink of an eye it will be over!

Last weekend I attended my 10 year high school reunion – it was fun, but a bit surreal. Pretty much everyone looks the same – if not better – and I love that our graduating class didn’t deal with all the bullying you hear about now. Sure, we had cliques – but it wasn’t as if you were in one clique and those were your only friends – we had a class of social butterflies. The majority of us got along and were friendly with each other, and that was exactly how Saturday evening turned out.

This week I have been busy sorting, organizing and getting rid of junk! And it feels fantastic! Nothing like extended family coming into town for your wedding to get you to actually get those home projects complete!

2011-06-02T11:46:00.001-07:00

He has started to realize that he’s “different.”

And it sucks.

This morning he asked me why the other kids don’t have vests. And cried when I sat everyone down this morning for his treatment time. He yelled, “I am MAD at my vest!”

Ugh. It was all I could do not to break down.

This is just another aspect that we’ll have to work through. He knows he has Cystic Fibrosis, but it’s just starting to occur to him that not everyone else does – well at least that his other little daycare friends don’t have it. That they don’t have to wear a vest. That they don’t have to use a nebulizer. That they don’t have to take pills every time they eat.

Beyond his daily treatments, he is just like every other kid – healthier than most other typical two year olds I know. And as hard as we put our emphasis on the “normal stuff,” the abnormal parts of his life are becoming more apparent to him.

The hardest part is having a kid smart enough to realize that he’s different, but not yet able to comprehend the whys or hows. But heck, neither do I half the time.

Memorial Day Fun

2011-05-31T11:45:00.001-07:00

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

2011-05-27T10:42:00.001-07:00

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!