Not Me Monday!

On the trip down to Dubuque, Casey and I would never play "I Spy an Amish!" once we hit Harmony, MN and eagerly search for the first buggy going down the road...That would just be inappropriate and we would never point out people different than us. Nope, not us! We are much too politically correct to ever play such a game.

We did not have to spend the last hour of the three hour drive repeatedly singing children's songs and handing Gavin Gerber Lil' Crunchies in an attempt to get him to stop screaming. We would never keep on driving because we were tired of driving instead of pulling over to give him a break from his car seat. Nope, not us! We always do exactly whatever Gavin needs!

Yesterday, while putting up our Christmas tree, I would never have attempted to put the middle piece as the base...and while using the wrong piece for the base, I would never be absolutely confused as to why the bolts meant to hold the tree upright wouldn't keep the tree from wobbling. I did not have Casey continuously attempt to get the bolts to screw in correctly. We did not make a trip to Menard's to get new bolts (thinking the old bolts were stripped) all the while clueless to the fact that we weren't putting the tree together in the correct order. This trip to Menard's did not make Casey miss the beginning of the Vikings football game yesterday. Once we returned I did not try to connect the base of the tree to the top of the middle section...at this point I did not shake my head, call myself a blonde and tell Casey what a dumb mistake I had made. I would never make such a dumb mistake, nope not me!

Want more Not Me Mondays? Check out MckMama.com to join in on the fun!

Turkey Weekend

I hope that you all had a wonderful Thanksgiving!

In a fairly recent family tradition (we're on year four) we headed down to Dubuque, IA to my aunt & uncle's house. Here we were met by my aunt & uncle (duh!), my cousin and her fiancee, my mom and grandma, and my brother and his girlfriend. This year, Casey and I decided to stay overnight in a hotel vs camping out in the house so we missed out on the late night wine drinking & card playing festivities, but it was nice to have a quieter place for Gavin to have some downtime.

As usual, Uncle Pat cooked up some amazing grub! Gavin couldn't wait to dig in... he wasn't too happy that people were taking their time to get to the table :)

It was fun to watch Gavin chow down on turkey, stuffing, sweet potatoes etc...he absolutely loved the stuffing, and he thoroughly enjoyed eating Gretchen's portion (my cousin who couldn't make it this year)


After filling their bellies, Daddy & Gav relaxed by watching some football



After a fun day with family, we retreated to the Hotel Julien which is an absolutely beautiful establishment. It just went through a 30 million dollar renovation. I wish I could have taken the entire bed back to our home, bedding at all. And that bed was huge!

Part of the hotel's renovation included putting in a new indoor pool. Besides visiting the indoor water park earlier this year, we had never gotten a chance to play with Gavin in the pool. He sure loved it!

After the pool time we knew we needed to rinse the chlorine off our little man. But slight problem, the hotel rooms have a shower but no tub...so off into the shower he went!

He loved putting his face into the spraying water!

After spending a couple more days with family, and doing some shopping on black Friday we headed back home. Yesterday (the 28th) was Casey's 30th birthday so we went to dinner with his parents...where Gavin flirted with the hostess throughout the entire meal...and hung out with a couple good friends. Nothing too exciting for a birthday celebration yet...that will be next weekend :)

Turkey Day!

Happy Thanksgiving!

I am so thankful to have Casey in my life and the most wonderful son in the world. I am blessed to have an amazing family, a wonderful group of friends, and an extremely loving and supportive CF family.

Have a safe and merry Thanksgiving everyone!

Wordless Wednesday

Growing, Growing, Gone!

Our baby is turning into a toddler right in front of our eyes.

For those of you friends with me on facebook, you know that I have been all sorts of sick for the last couple of days. And when you have a child with cystic fibrosis, you try to hide in the bedroom as much as possible to avoid spreading your germs.


I swear, this kid learned new tricks and grew in those two days. He loves to push his activity walker around, but just a few days ago he was fully relying on the toy to hold him upright. Now he uses it to steady his balance, but is getting closer and closer to actually walking.


FYI, we are screwed when he actually walks. He is already into everything. He managed to figure out how to take the back off my cell phone today and removed the battery. He has pulled a stool over on himself resulting in a nice bruise on his shin. He has started to figure out how to open kitchen cabinets (yes, I know we need to child proof them still), and he absolutely loves to throw all of his toys out of their bins just as a put them away.

...sigh....

But, there is no turning back, and walking world here we come!

Have you noticed it yet?

Yep, he's got a nice bruise on his face from pulling this toy over on himself

And yes, if you are under the age of 2 at our house...

pants are optional

Closing, Clinic & Friends

We closed on the house this morning. We stopped by to grab a couple of last items and ran into the guy who bought our home. I think our old neighbors will be pleased, he seemed very polite and very, very excited to own his first home. And yes, I shed a few tears as we drove away...but onto bigger and better times!


We hung around until late this afternoon and swung into the CF clinic to get Gavin his 2nd and final dose of the H1N1 shot...soooooo glad that it all taken care of! One last thing to worry about! Maybe some of you remember this, but if Gav's weight didn't improve enough we were going to have to add another medication to help his meds perform better...guesssss what! He gained enough weight so no new meds!!! I was really worried because he hasn't really eaten all day, he's been rockin a fever since last night and has refused to eat. He was up all last night too, so we're hoping it's just teething and nothing more major...but one day at a time.


While we were there we heard them announce a code blue in some section of the pediatric dept. Our pulmonologist and fellow (dr in training I guess?!?) heard it, immediately looked concerned and realized that it was one of their patients...ugh, I hate CF. They mentioned her name, won't mention it here, but that little girl will definitely be in our prayers.

Our pulm. also asked if we felt comfortable talking/meeting with parents with a newly diagnosed little ones...of course we said yes. In the past few months I hope that I have helped out other parents as much as some have helped me. I think the biggest fear is that life will never be normal...I'm not sure our life could be any more normal! Wish I knew then what I know now!

Gavin got his shot right before we headed out the door...after a day of no naps (we tried!) and little food....well, lets just say it didn't go well. As he screamed I told him that I would send him to Dr. Laguna's house if he didn't start to behave and she cracked up (while saying I don't think so!) and we all laughed when we thought about him getting into everything in her very non-babyproofed home :)

On different note, last Tuesday night we stopped over to have dinner with Casey's high school friend Kevin, his wife Amy and their two daughters Brynn (16 months) and Molly (7 weeks). Gavin loved playing with all of their toys and we both enjoyed the adult company!

Aren't they just the cutest?!?

Clothing Optional

Sorry for the lack of blog posts over the last week. Unpacking, laundry and playtime have eaten up all of my free moments! It didn't help that until five minutes ago I couldn't find the cord to connect my camera to my computer.

While it is very interesting trying to fit a house full of stuff into a much smaller townhome, we are really enjoying the open floor plan. We've gotten creative with storing items in the closets and Gavin is able to roam freely throughout the place.

He also seems much happier with his new found freedom...maybe a little too comfortable? :)

This could be trouble...
I can't even figure out how to do half the stuff on our new remote
(we upgraded and got HD and DVR)
yet my 9 1/2 month old gets his hands on it and turns the channel to cartoons!

Naked time has become a very common
occurance around our house...

Hope you all have had a great week! One week until Turkey Day! Yummmm!

Here

We're here, in another cozy little home...surrounded by boxes :)

But we're here, the crib is set up, our bed is made and I somehow have internet connection...

For now we're enjoying dinner, a couple beers (little man fell asleep early) and relaxing on the couch...here's to the next chapter in our life!

Congrats!

Congrats to Ronnie and Mandi on their engagement! Ronnie has been such an inspiration to me, and so many other CF parents. He caught the entire thing on video...head on over to his site to check it out! So excited for you both!

What I Know For Sure

Rebecca took the words right out of my mouth...Ellen was ON Oprah.

This pretty much made my entire month of November.

I have an obsession with Ellen...it's a must watch for me everyday...Oprah is not far behind.


Shhh, don't tell Casey, but a big reason I wanted a DVR once we move is because both shows are on at the same time in Rochester. Umm, what?!? Seriously. Who does that?

But...moving on...

Each month in O Magazine, Oprah writes a "What I Know for Sure," column...this month Ellen wrote the article (why I haven't bought this month's magazine still remains a mystery). Well, my friend Rebecca wrote her own "What I Know for Sure," on Mommyhood today and I decided to rip off her idea follow along with her and write a list of my own...so here goes!



What I Know For Sure: Mommyhood Edition

1. Even when your little one begins to sleep through the night, you will never again get a good nights sleep. Even while sleeping, your ears will strain to hear every little noise they make. Whether it's the sounds of sighing, the rustle of their sheets as they roll over, or their cries...you hear it.
   
2. There is no longer such a thing as having my own dinner plate. My plate is open for sharing. Whether the sharing is by my choice as I give my child a spoonful of food, or if a little fist pops up out of nowhere grabbing a handful...it's no longer my own.


3. It is impossible to go to Target without stopping in the baby/children department. It is also impossible to go to Target without a list...it's now a go in, get what you need, pay and leave event...no dawdling anymore!
   
4. Johnny Jump-ups were the best invention ever.


5. People you have not talked to since highschool (or longer!) will become close friends/confidants on facebook if you have children somewhat close in age.
   
6. You will suddenly have a great interest in your friends labor/birthing stories. How long were you in labor? How long did you push? Did you use pain meds?


7. You will wonder what in the world you did with all that free time? What did we do on those random Tuesday nights when we didn't have baby to stare at/play with?
   
8. The days of lounging in bed uninterrupted on a weekend morning (or ever) are long forgotten.
   
9. After changing ridiculous amounts of absolutely disgusting diapers, constantly wiping boogers and cleaning up spit up...there isn't much that can gross me out anymore.
   
10. You once again get giddily excited for the holiday season. It will once again be a time full of mystery, surprises and Santa Claus...and the bonus is that you get to enjoy it through the eyes of your child!

Stay tuned for next week's edition...What I Know for Sure: CF Mom Edition

What do you know for sure?

Wordless Wednesday

Moving Week

Can you tell it's moving week with the lack of blog posts?

The days seem never ending right now...they are filled with packing, cleaning, laundry, and oh yea...child rearing. Today we brought down two carloads of stuff and I was able to get the kitchen nearly ready to go, our goal is to have only furniture to move on Saturday...but we'll see how that goes!

Yesterday, Gavin had his nine month check up and everything looks great! I had thought that he would have some immunizations, so I gave him some tylenol before we left....umm yep, no shots yesterday. Whoops! But he has gained over a pound in just 10 days, I knew that his lack of weight gain was due to him being sick/teething! On Sunday night he ate and entire slice of pizza! He would have eaten more but I didn't want him to get sick...hopefully his love of food sticks around! He is also nearly in the 90th percentile for height, not sure where his height is coming from?!? Neither Casey or I are "tall" so it will be interesting to see if his growth spurts continue.

As we speak, Casey is attempting to feed him...it's not going well. Everytime Casey gives him a bite Gavin goes THHBBB! Now from the living room, it's HILARIOUS. From Casey's point of view, not so funny...ok I am being beckoned to take over....

Nine

Happy nine months little man! We love you!

Gav's diagnosis part 2

Part One

I can close my eyes and picture that exact moment like it's all happening again. I looked down towards the floor and saw my perfect sleeping baby in his chair, I know which onesie he was wearing. I've thought about getting rid of it...donating it, selling it, burning it. But it's still here, packed away with all his other clothes, just like any other outfit.

I thought my son was dying in front of my eyes.

All of my hopes and dreams for him vanished in a second. To me, cystic fibrosis was a death sentence. Did any of you read Lurlene McDaniel books growing up? I clearly remember one discussing CF for a teenage boy...and he died. He was a teenager. What the hell. Why my son. Why didn't he get a future. He looked so perfect. FML.

It took me a few months to realize that he is perfect in his own little way.

Bawling my eyes out I called our ped back, left a frantic message, and then called the number given to us for a genetic counselor at the University of Minnesota.

This HAD to be wrong. They must have mixed up his blood with that of another baby born that day. I mean, there were 12 babies born that night...it had to be a mix up.


I told the counselor that I was demanding a retest. At that point, I didn't understand how the screening worked. When the state runs tests on a newborn's blood, chemical imbalances can detect a mutated gene. This imbalance can be found on both carriers and those with full blown CF. So the state looks further into the imbalance and finds either one mutated gene (carrier) or two mutated genes (CFer). Needless to say, they found two mutated genes in Gavin's blood.

After speaking on the phone to the genetic counselor, and our ped, I calmed down. A bit. I knew very little about the disease, but we were told to stay off the internet until meeting with our new CF team at the U the very next day. I looked up the definition of the disease but left it at that. I found out later that Casey snuck downstairs to the desk top computer and looked up a bunch of information. He had never even heard of the disease, when the ped gave him the diagnosis he assumed it was something that could be treated...no sweat.

I don't think either of us slept that night.

We left for the U bright and early the next day, it was all I could do to not burst out in tears while sitting in the waiting room. Our CF clinic is located within the specialty pediatric clinic so the children waiting could have a multitude of different issues. I saw children with distinct deformities/disabilities, children on oxygen, children with clear mental instabilities...no way, this cannot be happening, this was not my son's place to fit in.

It didn't take long for the tears to erupt once we started talking to our pulmonologist. She broke down the basic statistics for the disease, and what it entailed. Somehow I managed to retain a lot of it.

Cannot digest food without medication, may have growth issues, body does not regulate salt & water correctly allowing build ups of mucus, bacteria sticks to mucus causing infections, the life expectancy at this time is 37.

Now this might sound crazy to you. But hearing 37 was somewhat of a relief to me. I had been picturing my son dying in middle school. And in the back of my mind, I knew what kind of medical development was happening in the world. I now knew that 37 was not going to be his expectancy, I now knew that he had a lot more life in him than that. I don't know how I knew that, I don't know how I know that. But I do.

After meeting our pulmonologist, the genetic counselor, the nurses, the nutritionist....we met the respiratory therapist. She is still my favorite person on the team. She is very blunt, but very loveable. She truly cares about her patients, she is the one that sits in the room and asks us about our lives...not just about CF. She has been working with CF patients for over 25 years, and she was honest by telling us that many of her patients get mad at her, sometimes even despise her. She makes them work their asses off to stay healthy.

She told us that on a scale from 1-10 of being aggressive with this disease...the U was at a 12. She told us that our son would bury us, not the other way around. She told us that we were the first "generation" of CF parents that she felt comfortable saying this to. She told us that the U has the highest life expectency in the country...it is typically 10 years more than the national average. She told us that the U was one of the best places in the world for CF care. She told us "The Vest" had been invented by a doctor at the U. She told us everything we needed to hear that day...enough of the bad stuff, and just enough of the "good" stuff.

We were later told that we held it together pretty well during this first appointment. I couldn't help but think...what the hell? We held it together? Are you serious? Oh man, it must get pretty crazy in there...in my opinion we most definitely did not hold it together well. But I guess after about 10 minutes I did stop crying, and didn't cry the rest of the appointment...

We were taught how to break open the enzyme capsules and mix them in with a dab of applesauce. Yes, my six day old son was starting solids already. Ok, my world really was getting flipped upside down. We would start with a 1/2 capsule with every "meal" and would work our way up a 1/2 capsule at a time until we found out what dosage he needed to be able to digest and absorb his food. Then we were told to go home and enjoy our baby...

Go home? Alone? Can't a nurse come with us? How are we supposed to do this alone?

Surprisingly, I never felt like this when we first left the hospital with Gavin, I felt confident in our abilities to take care of him. But suddenly, I felt clueless. Stupid. I had absolutely no idea how to care for my son's disease. But ok, we'll start with one enzyme at a time...one step at a time...one day at a time...

More to come...

Wordless Wednesday

Gav's arrival & CF Diagnosis (Part 1)

I had the perfect pregnancy. Seriously. No morning sickness, no extreme aches and pain, he even showed us his gender right away at the ultra sound.

But, I had a ridiculously long and stressful delivery. Twenty-seven hours. Not even kidding. I went into labor in the very early morning hours of Friday the 6th and had him in the morning of the 7th. And because of procedures I had in the past, he got stuck during delivery. My temperature skyrocketed to 102 degrees, I got tremors, and our little guy's heart beat plummeted. It's never a good thing when your talkative nurse suddenly goes quiet while looking at the monitors. Especially when it's 4 a.m. and you're delirious from pain medications and sleep deprivation. The resident on call was in the middle of delivering another baby, she had to run into my room (I'm sure the other patient was just thrilled) look at the monitors and told me to stop pushing. Umm..excuse me? Stop? Yea, ok real simple. Not. So for the next few minutes the nurse closely monitered me while we waited for the other baby to be born.

Soon the resident ran into our room, took another look at everything, and told me that I had three pushes to get him out or I'd have to have an emergency C-section. Oh crap. But with the assistance of the vaccuum and two huge pushes our little man was welcomed into the world. We had been warned that he may need to be rushed away immediately, but he came out pink and screaming so they let us hold him for a bit first. Then he had to stay in the "special nursery" until we left so that he could get antibiotics in case he had gotten an infection during all the drama.



We thought that two days under special care was no big deal. Then we could go home and start our normal, healthy family life.



Little did we know.

For the first couple of days I didn't notice anything wrong. But then, on a Wednesday night he filled up diaper after diaper with poop. Casey would just hold a diaper under him immediately after changing him and he'd fill that up. It happened with about six or so diapers in a row. I knew something was wrong. Breastfeeding babies did poop a lot, but not like this. So off we went to the ER. And of course he stopped pooping, he had nothing left in him! But after telling the ER doc that we were going to see our ped the next day he sent us home.


Everything looked perfect at Gavin's first pediatric check up. Weight was fine, he was tolerating food better (or so we thought), and the doc said he looked great.


We then broke some newborn baby parenting rules and brought our five day old baby to Target with us, our biggest concern was thinking that some old lady would breathe on him...so we kept him all covered in warm as we made the quick stop.


I was completely worn out by the time we got home and fell asleep, I vaguely remember the phone ringing. I vaguely remember Casey saying...uh huh, ok, so who are we supposed to call? The University of MN? OK, we'll call. Let me talk to Jen...


Casey then came and fully woke me up with the words I'll never forget..."Jen, Gavin has a disease called Cystic Fibrosis?"


The ped had gotten the results from Gavin's newborn screening test just 20 minutes after we had left his office.

Like Father Like Son

As you may have noticed in backgrounds of many pictures...Gavin has a lot of toys. Like...A LOT. But, as with most little ones, he ignores them most of the time and would rather play with straws, cardboard boxes, wrappers, the mail etc.

As I was sorting through our basement storage room I came upon some boxes that I wanted Casey to sort through. I noticed a set of drumsticks and was glad to have some at home for our little guy! We had thought all the sticks were with Casey's drums already in Rochester...so after a morning spent outside at an outlet mall we had a fun new game for the afternoon.

Supplies for game:

• 1 metal bowl (upside down)
• 1 set of drumsticks
• 2 advil

He started to get really into it...

Then he started showing off with stick tricks...

Rock on little man!

Needless to say, not only are Casey and Gavin similar in their looks, but also in their love for music & drums.

Like father...like son :)

Nose Smudges and all

Not mentioning any names but a certain 8 1/2 month old thinks it's pretty funny to make faces in the window...

Mixed in with some kisses...

Pointing...

And more funny faces....

Just two weeks until we move, it hit us last night that we really only have one more weekend here, it's very bittersweet. We will definitely miss our little, but cozy home in the big city. And boy, will we ever miss the big front window...even when it's covered in handprints, nose smudges and kiss marks :)

Notice the little face in the window?

Scooby Dooby Doo!

You could say that our little man's first halloween was a success! We trick-or-treated at two houses :) I could talk more about our fairly uneventful evening, but I know that you all just want pictures so here you go!