Sunday, August 30, 2009

Underwater Adventures

OK, so we weren't actually underwater, but it felt like it at times. Our realtor held another open house today, which meant that we needed to find something to do for a few hours. We decided to head over to the Mall of America and hit up Underwater Adventures.

When you first enter down a descending path, you walk through several scenes depicting Minnesota wildlife. There are replicas of large beaver dams, ponds with local fish etc. Then you enter the actual aquarium...

You walk through a "tunnel" where the fish, sharks, turtles etc swim on either side of you and often swim right over your head. It's very interesting seeing the underneath "parts" of these sea creatures and is very easy to forget that you are in the basement of a mall!

Gavin was enthralled and kept reaching out, trying to touch the creatures swimming by. He couldn't quite figure out how they were so close...yet so far away. But he smiled, kicked his little legs and had a great time!


At the end of the 1/2 hour "trail" there are smaller tanks filled with seahorses, "Nemos & Dories," sharks, a huge octopus and several other little critters.

Gavin really, really liked these smaller tanks. I think it was a bit less overwhelming and a little easier for him to take it all in.

Finally, at the very end (after you have to walk through their store, sheesh) there is a play area for the kiddos with a pirate ship filled with treasure. We spent a little time playing with Gavin and can't wait til he's a bit bigger so that he can run around like the older kids.








Now I am praying that Gavin falls asleep early because I am exhausted and Casey is on his way back to Rochester for the week. I think Gavin and I will head down there in a few days so we can begin our own house hunt!

CF Timeline on Ronnie's Blog

Ronnie has a really cool timeline of CF on his blog today

Head on over there and check it out!

Saturday, August 29, 2009

Our Day At The Fair

Ok, for those of you who are not from the frozen tundra, you probably laugh at the fact that I get so excited for the fair. And I hate to break it to ya, but you are missing out on a really fun time! It's the largest 12 day fair in the nation and you are the odd man out if you don't go. I also love explaining it to my friends who aren't originally from the state. At first they think we're all nuts...and then they go....and then they get addicted along with the rest of us :)

People are willing to stand in line for a 1/2 hour for Sweet Martha's Cookies, deep fried pickles and cheese curds. And yes, we did all three :)

To us Minnesotans, the fair means its the end of the summer season and school is about to begin. For that reason, the fair was always bittersweet to me growing up, and still is!

Ok, ok, here are the pictures!

Not too crowded when we first arrived


Watching people drum

This was actually really really cool. For you Minnesotan's, it's across the street from the Fine Arts building. A guy pulled about 25-30 people (kids and adults) out of the audience and had them come up on stage where each had a snare drum with a cowbell. He taught them probably 10 different rhythms and then they put them all together and played along to a fast beat song. Gavin absolutely loves music, so this part of our day was a hit.


Watching trained rescue dogs perform tricks









Going shopping in the Grand Stand

Someone needed a break...

First taste of cheese curds...he loved it!


OK, so maybe he wasn't sure what to think about it...but he sucked on it for awhile!

It got really crowded in the afternoon




Kind of a funny looking Mona Lisa :)

Mommy and Gavin

Our little family

All in all the day was a success! We were there for 6 1/2 hours and Gavin didn't have one meltdown! We managed to feed enzymes, bottles, solid food and change diapers (yes, I was that mom!) in some of the few open spaces where people spread out to relax for a bit. Next year should be even more enjoyable when Gavin can begin to really appreciate all of the fun!

Friday, August 28, 2009

How smart is YOUR foot?

This is hysterical. You have to try this. It is absolutely true.

This will confuse your brain and you will keep trying over and over again to see if you can outsmart your foot, but, you can't. It is pre-programmed in your brain!
  1. While sitting, lift your right foot off the floor and make clockwise circles.
  2. Now, while doing this, draw the number '6' in the air with your right hand. Your foot will change direction.

I told you so! And there's nothing you can do about it! You and I both know how stupid it is, but before the day is done you are going to try it again, if you've not already done so.

Ok, so I even tried doing it really, really slowly and my foot still went counter-clockwise. Yes, I do have some time on my hands!

This is what happens...

This is what happens when you let Mom and Grandma go shopping....


Yesterday our house officially went on the market...I know, finally right?!? So I needed something to do to get out of the house while people were coming to take a peek. In five hours of having it listed, we had 7 appointments set. Hopefully that's a good sign. My mom had the day off of work, she had babysat Gavin on Wednesday night while I went to a friend's surprise 30th birthday party, and stayed over. What's better than doing some shopping for the world's cutest little guy to fill up some free time!
I was also really excited that these pants finally fit him...


Like the stain from his vitamins on his big belly? Luckily we switched over to Vitamax which doesn't leave stains like his previous ADEK vitamins, so it will wash out. And Gavin has also decided that he LOVES his paci. When he was first born we couldn't take it out of his mouth, but then for awhile he refused to take one. Now he can't get enough of it. I think it's partially because he is teething and it feels go to chew on, and also because its really fun to throw on the ground and scream until I go pick it up. Which explains the clip I now fasten to his shirt and paci that keeps it from falling.

While we were at Target I saw this faux leather wing backed chair for little ones. I think this is going to be a future Christmas present, it will be perfect for him once he is able to wear The Vest. And with Pheonix's mom's advice, it will be easy to wipe down for those...ahem...diaper explosions! And yes, I was that mom that was snapping pictures in Target...


I had considered getting a bean bag chair in the future instead, until I read this post by Nathan's mom...ok I think we'll be sticking to a chair, hehe.

Each morning the sun shines through our big living room window and Gavin has just noticed his shadow that appears on the couch. Yesterday, he spent nearly a half hour trying to figure out what that thing was! He batted at it, talked to it, cried when he couldn't hold onto it...maybe I'll dress him up as Peter Pan for Halloween...
Oh by the way, this is what happens when you let a Vikings fan go on a shopping spree...


We're off to the State Fair tomorrow...I seriously can't wait....CHEESE CURDS here I come!

Tuesday, August 25, 2009

Louie Love and Bath Time!

Hey Louie, I can help you out with that bone...
See, look how easy it is for you to chew if I hold it just like this...


I could just watch you chew this thing allllll day long...


Well geez Louie, you could just tell me you're tired of me, you don't have to hold my hands down...


Alright, peace out yo, I just saw mom's camera and I'm gonna go try to slobber on that instead...



Now this is a kid that LOVES his baths! Just wish we could keep him in the tub longer, his CF causes his fingers & toes to prune really quickly and it can really hurt if we're not careful...hit the play button to watch the video

video


Yes, he does barf a little and no, he isn't farting right before he talks, he's grunting! He's definitely allllll boy!
'

Monday, August 24, 2009

Not Me Monday!


It's been awhile since I've done one of these...or posted...life is just too darn busy lately!

I of course would never, ever make Gavin play in his crib instead of giving him the freedom of the living room floor so that I could shower, clean, email...take a breather...life is always about his needs, never about my peace of mind!

On Saturday we brought Gavin to his first wedding and we most definitely did not allow him to sleep in his car seat halfway under a dinner table during the reception instead of getting a babysitter. I would never be that parent. Nor would I be the parent to change his diaper in the middle of the family room (sound proofed!) floor while the ceremony was going on instead of using the restroom changing table just outside the door. Nope, not me! I am definitely not that lazy!


I am not at all uber excited to hit up the state fair this weekend! I definitely do not look forward to this event all year long. I will not be eating an insane amount of cheese curds, corn dogs, or anything deep fried or on a stick while trying to convince myself I'm burning it all off while walking around all day. I do not love to judge others people watch to see what kind of characters live in this state. I would never be that judgemental!


I am not considering hit up the fair both days this weekend since our realtor will be doing open house on Saturday and Sunday...hmmm


Friday, August 21, 2009

Little Ben and other info

I've "met" another mommy through a yahoo support group that I am in named Margaux, who has an adorable son Ben, who is very close to Gavin's age. Ben also has CF, and has wonderful parents that are doing their darndest to keep their little guy as healthy as possible!
Their family also has a blog, go ahead and check it out and give them a big hello!
I do have to say that the two groups through Yahoo that I have joined have helped me out immensely. I have met parents from all over the world who are striving to make their children's lives as normal as possible and everyone is giving it everything they've got to find a cure! Many of the parents I have met through these groups are now also facebook and blog friends, and we all stay in close contact. I don't know what people did before the internet, I would have felt so isolated and alone!
On a different note, Gavin and I are down in Rochester once again, we're in town for a wedding...should be interesting, it's Gavin's first wedding ever. Any bets on how long he'll last at the ceremony? At the reception? At least it's a Lutheran ceremony, we know how to keep them short and sweet, haha!
I forgot to mention yesterday, that in order to get the H1N1 vaccine (Gavin and many of his "friends" will be high priority) you must have the regular flu shot first. They have started giving out flu shots already in preparation for this newer vaccine, just thought I would get everyone a heads up so that they can also beat the seasonal rush!

Thursday, August 20, 2009

Wellness Visit

Our little guy had his 6 month wellness check up today (I know, I know I'm a few weeks late) and all seemed well. We didn't go to our regular clinic, we had to go to a different location because the clinics are so busy with all the back-to-school check ups. It made me realize how awesome our regular clinic is! This place was clueless about CF. I had to explain all his medications and why he needed them to the doctor. Really? Seriously? She didn't even really know about the pancreatic enzymes? Oh boy...oh well we'll never have to go back there again :)

As usual, they all laughed about how crazy wild he is! He is about 2.5-3 months ahead when it comes to sitting, crawling and all the physical skills. He is right on track with his verbal skills. The doc was also shocked that we had him on stage 2 and 3 foods, but I guess that happens when you start eating solids (applesauce) at just five days old! Gavin really hated the shots...but who doesn't...and is now sounds asleep in his crib after a dose of baby tylenol.

His weight is at 17 pounds 13 ounces (it was 18 lbs 1 ounce at our appt last week when we went in about his rash) which put him at the 50th percentile, his height was 27 1/4 inches which is the 75th percentile and his head size was in the 70th percentile (it's full of brains, he's gonna cure his own disease, remember?!?). So far, so good!

Hopefully we won't have to go back to any doctor for a few weeks now, 3 visits in 6 days is more than enough! We will have to go back in 4 weeks for a 2nd round of his flu shot (they give 2 doses to infants) but hopefully nothing arises between now and then!

Here's some new pictures...sorry it has been so long since I've added any new ones! One of Gavin's favorite things to do is play around naked :)


Tuesday, August 18, 2009

Just a few words today...

Brett Favre is officially a Minnesota Viking! It will be sweet to see him in PURPLE and gold this year!

Let the football season begin!

Monday, August 17, 2009

Whew

It's over.

Whew!

Was it fun? Nope, not at all. But did it go well? Ya, you betcha! ;)

Our day started at 1 am when we woke up Gavin for one last "breakfast" since he couldn't eat anything after 2 am. He was a bit confused but ate a huge bowl of rice cereal. He was then able to drink any clear liquids until 6 am. We woke him up again around 4:30 to keep him sleep deprived and tried to get him to drink some fluids but he wasn't feelin' it, he only took three or four gulps over the next hour and a half. Oh well, at least he got in that big ole bowl of cereal.

We got to the hospital a half hour early, surprisingly there wasn't any traffic (with our luck, if we had left later traffic would have been horrendous) and the children's imaging and sedation department was very easy to find. We waited...and waited...and waited in the waiting room (I know we were early, but still!) and watched several other kids get checked in and then finally, it was our turn!

But oh yea...

There was still more waiting. :)

After a little bit of hanging out in "our room" the nurses started checking Gavin's blood pressure, temp, etc and got an IV started (got it on the FIRST try woohoo!). His sedative was an oral medication, but they got in the IV just in case he woke up between the two procedures. Our respiratory therapist, Anne, then did a quick nasal swab...its about as fun as it sounds...the nurse drew some blood...and we had one very crabby and mad baby on our hands! Once Gavin got his meds it took about 15 minutes for him to be completely "out." Then they swooped in, grabbed our sleeping little man, and got everything started.

Then there was a lot more waiting for Casey and me.

Once his PFT was completed our pulmonologist (a different pulm did the procedure) came into tell us everything went smoothly and his results were great! His FEV 0.5 was 125% I won't even try to explain this except to say it is a measure of how fast he could blow out the air in his lungs in 1/2 a second. When he gets older they will test how long it takes in one second. Yes, there were a bunch of other numbers tested, if you really want to know more about those and the results, shoot me an email. I won't bore you all with a bunch of numbers.

After the bronch was completed, our pulmonologist came in and told us everything looked great, and showed us a sample of his mucus. Oh the joys of being CF parents :) She told us his mucus looked "great." I wasn't aware that mucus could ever look great, but apparently it does! When I asked her what it would look like in twenty or so years, she interrupted me and said...hopefully it will be another 40 or 50 years until it looks a lot different! So reassuring for us to hear and just another reason why we love our docs so much! :)

Oh, they did not need to give any more medication through his IV. The oral sedative did the trick for both procedures. Anddddd our doc will be learning more about VX-770 next week...hopefully I'll get more updated info from her soon! She is very optimistic about the results thus far!!!

So do you think that we relaxed when we got home? Yea right! While Gav fell asleep in the car and stayed asleep for several more hours, Casey and I did some power cleaning before our realtor got here.

Did we have it ready enough for him to take pictures?!? Of course not! But I am determined to get all of the remaining last touches completed this week so he can come by, get pics and list our house! He also recommended listing our home for more than we expected, a plus!

We lucked out, where we live the housing market has not been affected by the economy...the homes have held their values and are still selling quickly. Let's hope ours goes quickly as well!

Now I am off to try to remember how to lower the mattress in Gav's crib. He just managed to pull himself onto his knees and is staring at me as if to say..."look at me mama! I am such a big boy!" Yikes...he just turned six months....any bets on when he'll start walking?

For info on infant PFTs click here
For info on bronchoscopies click here
For info on FEV click here

Sunday, August 16, 2009

Not looking forward to tonight...or tomorrow...

Gavin has his first infant PFT and bronch tomorrow, and we are not looking forward to it. We're also not looking forward to the night/early morning ahead. We have to bring Gavin in as sleepy as possible (to help with the sedation) and he can't have any food after 2 am and only clear liquids until 6 am.

Now, for those of you who have spent any time with our son, you will know how difficult he is to "handle" when he is tired or hungry. Mixing both of those together sure will be interesting.

Although...

I am happy

because we had to push back from our initial date in mid-July,and this means that we are no longer the first family to go through these procedures back to back. In fact, my friend Jenni had to bring her daughter (who is just a couple weeks younger than Gav) in TWICE because the first time they had huge difficulties getting her sedated and once they got her in the room....the machine didn't work. Luckily, our pulmonologist said enough was enough once they couldn't get things going right away with the equipment. But, the second time they brought her in, everything went smoothly. I am praying that it goes smoothly for us the first time around...

Plus, for the last week Gavin has had a rash covering his entire body. Our ped saw him and decided it was a minor viral infection, the CF clinic said not to stress over it, but yuck. I felt so bad for the little guy. Although, it didn't seem to be affecting him at all. I think looking at it bothered me more than it actually bothered him :)


For those of you curious, the house goes on the market next weekend. We have spent the last two days frantically getting last minute stuff done (touch up painting, rug doctoring etc). Our realtor is stopping by to take pics for the MLS. And we are both exhausted. Should be an interesting night trying to stay awake...

Thursday, August 13, 2009

Prepared

Very early this morning I had a brief glimpse into the what shoulda/coulda/woulda been...I made a bottle before I got his enzymes together and started walking away from the kitchen, with only a bottle in hand...sigh...

I always get Gav's enzymes together before his bottle because if he gets a look at his bottle and doesn't get it right away...game over.

For those of you who can just plop a bottle in your child's mouth, or sit them down for a meal without having to consider how many calories you think they might consume

...apparently it's fun to be really hungry when I make a small bowl of food and to get full fast if I make a large bowl...

and have to weigh out how many enzymes you think they should take so they don't get too few...resulting in a bad tummy ache & an explosive diaper...or too many...

Consider yourself lucky.

Now, I'm not complaining. OK, maybe a little bit, but most of the time I consider myself to be very lucky to be living in a time where we have such awesome medications helping us to control his GI and other issues...but every now and then I realize that this wasn't what was supposed to happen.

See... Gav has been a surprise from the moment we found out about him. I wasn't supposed to be able to get pregnant without some medical help (aka fertility drugs) due to past

and botched

medical procedures. I was also on "the pill." And we weren't anywhere near a point in planning for a baby...or getting married for that matter! So needless to say...

we weren't prepared.

Then Gavin decided to arrive a week early...

we weren't mentally prepared.

And at five days old, we got his CF diagnosis...

we weren't mentally, physically or emotionally prepared.

But luckily, we were spiritually prepared. Both Gavin's arrival and his diagnosis reminded us that we have no control over our future, or how long we are granted time here on earth.

Those plans are not in our hands.

Becoming aware of Gav's medical condition was a slap in the face.

WAKE UP! GROW UP! YOU DON'T GET TO MAKE ALL THE PLANS!

But it was a slap in the face we both needed. I believe that both of us grew up and matured faster in that one day than we had in our entire lives.

And as hard as I try to wrap my brain around the fact that my child has this horrible and disgusting disease. And I try to prepare myself emotionally, physically and mentally for what our future of fighting this disease may bring...I have to remind myself that being spiritually prepared is all we really need.

Oh, and just in case you were wondering how fast you are driving...come drive by our place.

This...


is in our front yard.

Monday, August 10, 2009

Not Me Monday!


Today I most definitely did not have to child proof our living room. Our six month old (as of last Friday!) has not begun to scoot all over the place. No way, he is much too young to be that mobile. I did not have to push the chair and couch closer together so that the ottoman would block any "exit" out of that room. I never have to be concerned about my child eating his doggy's foot, I would never catch him going after it with his mouth wide open while his doggy is napping...I am much too observant and never ever leave the room for just a minute or two while Gavin is on the loose!
This past weekend, Casey and I never placed a full bottle on the other side of the living room, and then continuously move it away, just to see how fast our little guy could move. I would never allow that to happen, that's just too darn mean!
I of course did not call my dog into the kitchen after spilling baby food (green beans, yuck!) all over the floor. I would never allow my dog to "clean" up after my mess...I am much too sanitary to consider that to be cleaning!
Finally, I am not at all excited for my friend Katie to finally get out of that dang hospital once and for all so we can finally meet face to face and have a beer...or two...or three... :)

Sunday, August 9, 2009

Cousin Time

With this get together of the cousins, Gavin was actually able to "play" alongside the big kids. It was a lot of fun seeing him hang out with people his size...where we live now very few of our friends have kids so he hasn't gotten a lot of interaction with other little ones.

Uncle Kevin bought a hunting tent at Cabela's, so the three kiddos spent some time in it in the front yard.

As you can tell by Gavin's stare...he thinks his big cousins are pretty darn cool.

After Great-Grandpa's wake and spending time at Great-Grandma's home, the two boys got a second wind. This was around 11 pm and the rest of us were really ready to fall asleep, but these two guys were clueless and had a good time just hanging out and being little silly boys.

Smell my stinky piggies Gavin!

Grant...you're in my way!

Both the boys loved this toy...

Sharing!

Our little guy has gotten really good at scooting across the floor. He's not quite crawling, but pulls himself around with his arms and a little help from some wild & kicking legs. He really gets moving if he sees his bottle, maybe we have a future Michael Phelps on our hands?!?
We tried to get a shot of all three kids all dressed up for the funeral, which we've decided is pretty much impossible. If we could get a moment where one wasn't crying...then one wanted to get off the couch...or someone across the room made a noise they had to check out...or, well, you get the picture (no pun intended).

I figured that one pic without any tears would have to do the trick :) Aren't they just the cutest?