Please keep our buddy Jaxson in your prayers today…
He was admitted back into the hospital, poor little guy has had a heck of time staying out of that place :(
We too will be heading to the hospital tomorrow, but for very different reasons.
It is time for Gavin’s annual CF check up. Another bronch & PFT (for which he’ll be sedated)… bloodwork….chest x-rays…visiting the his whole medical team…but we’re also hoping they’ll fit him for his Vest.
Not to mention any names...but a certain (almost) one year old has started to figure out that walking is a heck of lot easier than crawling.
Last night, while we were over at Casey's parents for dinner, Gavin decided that Grandpa & Grandma's living room was a great place to walk all the way across the room (20+ steps). Then all evening he practiced his walking skills eagerly walking between people and furniture, around the couch…but learned to avoid the slippery kitchen floor after a good wipe out.
The funny part? He balances himself by walking like Frankenstein. :) Both hands in front of him while walking fairly stiff legged (maybe an idea for Halloween next year?)...still trying to catch it all on video, hopefully will have that for you soon!
But for now, his favorite "toy"to push around? A stool! Silly kid...
More good news to come (finally!) as soon as everything is more concrete!
There is absolutely ZERO government funding for the Cystic Fibrosis Foundation.
NINETY cents of every single DOLLAR donated goes directly toward Cystic Fibrosis research.
Please click the link on the left to donate to our Great Strides Walk.
If each of my facebook friends donated just five dollars we would raise $3,700.
We would raise $7,400 if each friend donated ten dollars.
We are begging you to help us find a cure for our son.
Most people in our life have absolutely no idea how much work we put in each day to keep our son “healthy.”
Really, the only ones that understand are fellow CF parents…
This video gives you a glimpse into my world.
(p.s. Rebecca, Blake’s mom, has become a good friend through facebook who I learn from and lean on almost every single day)
It’s been awhile since I’ve updated on Gavin’s latest accomplishments..
Words
He has also gotten a lot better walking. He now freely walks between our couch and love seat/ottoman (8-10 steps) with or without us urging him on, will walk across the room between the two of us as we cheer him on, and can comfortably stand on his own in the middle of the room. There are times when he stops walking to stand for a few seconds, then continues on his way.
He often cracks up when he hears someone laughing, waves hello & buh-bye (with his whole arm now, no longer just the open/close hand motion), smiles and points at friendly people in stores, and flirts with anyone who gives him a minute of attention :)
He loves to snuggle with his stuffed animals, and giggles when you say “night-night!” while he lays his head down on the floor.
If you say… “Brown bear brown bear, what do you see?” He crawls over to the bookshelf and pulls out the correct book. He also gets the correct toys out of his toy bins on command. Gav absolutely loves cause & effect toys (ie push a button which results in a noise/something popping up) and loves to perfect his walking skills while pushing his Tonka truck or an upside down laundry basket.
He is trying really hard to throw a ball, especially when Louie (the dog) brings one over to him. It pretty much goes straight up and straight back down…but at least he’s attempting!
If you ask Gav to “eat your feet,” he giggles and puts his feet in his mouth. Loves holding socks up to your nose to smell how stinky they are, and consistently finds lint/paper/fuzz etc on the ground eagerly handing his finds to mom & dad.
But for now…we’re all being lazy. Getting ready to serve up some extremely unhealthy food (and possibly a couple adult beverages!) dressed in our purple & gold gear anxiously awaiting the Vikes/Saints game.
Gavin’s first birthday is officially on Super Bowl Sunday. Hoping for a Vikes win today so they can give Gavin the ultimate birthday gift…the National Championship!
Cold weather + three individuals tired of being inside = Lots of trips to the local mall :)
Lucky for us, our mall has a small play area for all the kids to let loose…and Gavin sure loves it!
He played hard for over a half hour and was so worn out by the end that he wouldn’t even crawl anymore, just held his arms up so Daddy would put him back in his stroller.
Finally, an afternoon nap! He’s been refusing those lately! It was nice to have a bit of time to lounge this afternoon!
The other day at the grocery store, I noticed a new product in the yogurt section…
This is GREAT for those of you with kids who need to vamp up the calories. Each of these has 160 calories, 85 mg of sodium and 5 grams of fat. Can we say perfect for little CFers running around! It’s great for just a snack or an addition to a meal. They have three flavors (no, no one is endorsing me to say this…I could only wish!) and Gav can’t get them down fast enough. Plus, they are organic :) Click the picture for more information on it…definitely a new staple in our fridge!
Well it’s time for bed around here and this guy…
is refusing to put on the pjs sitting in front of him…
Wish me luck!
p.s. 10,000 points to anyone who can name that book behind him! major favorite around here :)
Before Christmas, we had headed over to Fleet Farm to check out their supply of toys for the season and noticed the perfect sled for our little guy.
But, until just recently it has been much too cold to venture outside for any length of time.
Today it’s in the mid 30’s (a heat wave for January!) and I decided to get our little man all bundled up to go play out in snow…
Thank goodness he’s still in diapers…I think all kids from Minnesota innately know that you never have to go to the bathroom until after you’re all bundled up and about the head out the door :) At least we don’t have to worry too much about that for another year or two.
He absolutely loved being outside…giggled as I ran and whined whenever I stopped. Unfortunately, I couldn’t get a picture of him smiling… he got too concerned that the fun might be over when I stopped moving to take a picture :)
As you can see from some of the pictures, we currently live on the very outskirts of town. Not much past our place except a bunch of empty space & cornfields :)
When we came upon a tiny slope I of course had to send him down it...
Pretty sure he had absolutely no idea why I was pushing him down that small “hill”…definitely think I got more enjoyment out of it than he did!
But at least when he’s older he’ll hopefully get a kick out the video…and will probably make fun of me for all of it too :)
Want to donate $2 to our Great Strides Fundraising without ever handing me a dime?
Want to get connected to a legitimate online survey site where you can actually earn some extra spending money?
Want to know how?
You can earn cash from the site while simultaneously donating to our cause…
Can it get any better or easier than that!?!
I’ve already earned money (all of which we will be donating) and it’s SO easy. The most recent survey I took was from Enfamil…it took around 8-10 minutes to answer their simple questions and I earned a few bucks. Bam! Easy as that!
So email me with your own email address so I can fatten your wallet and you can help in our fundraising!
Every penny brings us one step closer to a cure!
One of the hardest aspects of dealing with Cystic Fibrosis is the isolation.
Because certain bacteria can reek havoc on a CFers lungs (and this bacteria can be spread by contact) it is advised that they don’t come in close contact with one another. Depending on who you talk to, it can be anywhere from a 3 foot to a 10 foot rule.
Therefore, the internet is an amazing place for CFers and their caregivers to avoid that isolated feeling as much as possible.
Ronnie came up with a great solution. A social networking site called CysticLife.org which was launched just a few days ago. It has a similar concept to sites such as Myspace & Facebook and has created a way for those with CF, their friends, family and caregivers to have educated conversations, fun chats and to create connections. More CF awareness & and less isolation from one another…not sure if it can get much cooler than that.
In just three days, Ronnie had over 500 members on his site.
How amazing is that.
I also thought that I “knew” of the other local families dealing with CF…but on my second day on the site I connected with two local families I wasn’t aware of. One has a son just a bit older than Gavin. What an amazing place to find support.
I just want to give Ronnie a big (((THANK YOU))).
You are such an inspiration in so many ways. I know I’ve said this many times, but I can never say it enough…I truly hope that my son can grow up to be just like you!
So whether you are afflicted with CF, are a parent, grandparent, aunt, uncle, friend, or just know of someone who lives with CF, head on over to CysticLife!
Some parents have to teach their kids to keep their elbows off the table.
I on the other hand…
…am just working on keeping his feet off the “table.”
I’ve been had.
Scammed.
Betrayed.
Lied to.
And I am not a happy camper. Not long after Gavin was diagnosed with CF a gal named….let’s call her Jane Doe…messaged me through facebook to let me know that she was in her late 20s living with CF.
Jane Doe was so supportive, lived nearby and even though she had had a lung transplant, she was doing well and living life. It was so cool to “meet” an adult CFer.
Well two days ago, I was contacted by several individuals that Jane Doe doesn’t actually have CF.
Um, what?!?!
At first I didn’t want to believe it. I was shocked and in disbelief.
But then I started putting the pieces together.
Still not sure why it took someone else to alert me…putting all of those “facts” together makes it pretty obvious. There’s more that I didn’t even list…sigh…
I don’t know if I should be mad at her, or feel bad for her. She’s obviously a very lonely and mentally unstable person to make up such lies…and to go to such extremes to try to keep them all in line.
But I do feel like I wasted uncountable hours worrying about her…and praying for her…
Have I confronted her? No.
Why? Not worth my time.
The facts are there. There is no need to spend anymore time fretting about it.
Unfortunately she is not the first to fake having CF in the internet world & there are probably others just like her floating around claiming to have other diseases. Hopefully someone will be able to track her down, and all the others out there, so they can receive their deserved consequences and receive the help they so greatly need.
Now that our little blondie isn’t such a baldie…the hair creations he comes up with after a long nap tend to get more and more interesting…
Now if we could only get some of the hair on the top and sides of his head to grow…he’s unintentionally starting to boast a mini Jared Allen haircut…
And the winner is….
“Geerts!”
Her idea for fundraising was to auction off “artwork” created by Gavin. While he might be a little young this year, it’s definitely something I plan on trying in the future!
Please contact me so we can design your personalized shirt and I can get it ordered!
After signing up for a gym membership at our local YMCA last Tuesday, it most definitely did not take me until Sunday to actually show up there. I understand the value of a dollar, how much money we spend there per month, and would never “forget” to go because it was so cold out that I’d rather stay inside in sweats…
Frozen Tundra natives are also not at all excited for the “heat wave” this week. Consider highs in the upper 20’s a heat wave? No way! Not me!
Last Friday, I did not encourage Gavin to empty the cupboard full of plastic baggies so that I could have five minutes to eat a '”peaceful” lunch.
I also would never fall in love with multiple homes through online searches. We aren’t even in the market for a home yet, and of course would not be silly enough to love a home before actually seeing it in person.
I do not think that Gavin is so adorable wrapped up in his towel after his bath, that sometimes I take awhile to change him back into clothes…
Nope, not me! I would never want him to keep him wrapped up and wet instead of dry and in clothes :)
Today is CF Awareness Day!
So what better time to register our team, “Gavin’s Groupies,” for Great Strides 2010!
You will notice that on the left hand side of the screen there is now a button to lead you to our donation site.
Last year, in just a few weeks, we managed to raise nearly $8,000 through multiple walks across the nation.
This year, our goal is to raise over $10,000!
If you would like to register to be a walker on our team (May 1st) please contact me and I will give you directions on how to do so. You can also create a “Gavin’s Groupies” team in the walk in your home state, I can give you information on how to do that also!
Please join us to fight for a CURE!
On a different note (kind of), Gavin’s annual CF clinic visit has been scheduled on Monday, February 1st. Each year, around the time of his birthday, we will have this major visit which will take up the entire day.
This year he will be getting sedated for another PFT, a bronchoscopy and will also be getting chest X-rays, blood drawn and visiting with our CF team.
But guess what else he’ll be doing….GETTING FITTED FOR HIS VEST!
We cannot wait to get it! No more manual chest percussions! (Although while he is young we’ll most likely do manual CPT while traveling instead of hauling his Vest around)
Any guesses on how much they cost?!?!
Between $12,000-$16,000.
Thank goodness for insurance. Hopefully we won’t get too much resistance from them for it, oftentimes CF parents have quite the battle to get it accepted. But luckily, the Vest was invented at the University of MN (Go Gophs!) so our clinic is willing to fight the insurance battle right along with us since they really know the importance of it.
Don’t forget to add to the handful of fundraising ideas that people have posted HERE. The best idea wins a personalized, handmade shirt for a little one in their life! If you are having issues commenting with Blogger, feel free to comment through facebook…I’ll share those ideas in a different post.
A couple days ago I announced I was going to host a contest for those who voted for Gavin in the “Cutest Baby Contest” (the winning savings bond will be going towards his future CF medical bills) and then almost immediately retracted it.
Why?
After thinking about it for a bit…I felt like I was “paying” you for votes…didn’t seem too ethical and I was probably breaking some sort of contest rule.
So here’s a new one. A giveaway. For real this time!
Interested in something like this for your little one?!?
Our local Great Strides Walk is just a few months away and I am looking for some creative ideas for fundraising…besides just asking people for money :)
So…comment here with a creative idea, and the most creative idea will win a personalized infant/toddler/kids t-shirt for a special child in your life. (Judged by both Casey and myself)
Contest ends Monday, the eleventh at 5 p.m.
If you’re interested in more info on the shirts, feel free to visit Susanna’s Etsy store by clicking HERE! Her shirts are adorable…and a certain (almost) one year old might be getting one for his big day…shhh!
Please comment through blogger instead of facebook so that everyone can see all of the great ideas I am sure you will come up with!
We are officially members of our local YMCA.
Number one reason? It has a small water park.
Number two reason? I need to get in shape.
We had talked about joining before we even moved down here. I really want to get Gavin signed up for swimming lessons. Swimming abilities are a must when you have a cabin on a lake. Yesterday, I get a random phone call…
“Congratulations! You have won a two week pass to the Rochester YMCA!”
Sweet! It will be a great excuse for us to actually go visit the gym and see if we like it. But needless to say, we ended up signing up for memberships instead of using the two week passes.
But, because we got the phone call, it costs us thirty dollars less a month and our enrollment fee was waived!
Now, lets see if we actually use the gym…instead of just going to bring Gavin to the pool!
I have a bone to pick with you all…I get 150-250 hits a day on this blog…and yesterday I asked if you would help Gavin win the local “Cutest Baby Contest” by voting for him. We have 16 votes. We are in the lead…for now…but come on! I get that many hits a day…and only 16 votes so far?!? I KNOW that you all can do better than that!
No, you won’t get a million emails from our Fox News Network because you register.
Yes, you do have to register…but it takes about 1 minute and it’s only so they can track votes and prevent you from voting more than once a day.
If just half of you take five minutes to head over HERE to vote, we will be WAY in the lead.
We are faced with the dilemma of saving money for Gavin’s future medical expenses AND for his college funds, so every penny we can add to either of those helps!
So yes, I am asking, begging, not entirely pleading (ok maybe I am) with you to help us out. We’re not asking for any money…just five minutes of your time!
And once you register, you can go back everyday and vote. And once you’re registered it takes all of 15 seconds vote. And you’ll have one very happy (almost) one year old boy and two very happy parents (bragging rights included).
Soooo, click HERE to vote!
Well we thought Gavin learned a new word the other day…and we were right, sort of. My first word was “hot,” and while we were all in the kitchen the other day we thought he was saying “hot” over and over again. I was all excited, thinking that one of his very first words was the same as mine.
Wrong-o bucko.
We should have known better. Casey wears a hat 24/7, and with it being freezing cold outside Gavin has to wear one whenever we go anywhere. It’s always an adventure getting him to actually keep it on, so needless to say he hears “let’s put Gavin’s hat on” and “keep that hat ON!!!!” over and over again.
Today, Gavin picked up one of Casey’s million hats and proudly declared, “hat!”
Duh.
We rarely talk about anything being hot…it’s winter in the frozen tundra. The only thing that’s hot is our sky high heating bill.
So here you go, a little proof that we have a mini genius on our hands…one that’s already smarter than his parents…
And a little extra in there for you…did you catch the uh-oh at the very end???
Our little man LOVES to read his books.
If you ask him where they are he crawls as fast as he can to grab one…or two…or three…before long they are all off the shelf and all over the floor.
He calls them “boooos” (gotta work on that ‘k’ sound!)…
and spends a good portion of his day leafing through the cardboard pages
He also loves to pick one out (typically “Brown Bear Brown Bear” or “The Digger”) crawl it over to Casey or me and thrust it in our face. If you don’t drop everything instantly and read to him, watch out for those crocodile tears!
Do you find yourself spending way too much time tweaking your posts, only to end up even more frustrated with the “compose” section of blogger? Hate not being able to move your pictures around how you would like? Annoyed with the limited layout choices?
I was too. And maybe many of you have figured this out already, but today…I made an awesome discovery through the amazing world of Google search :)
I’m in love. With a computer program. And Casey should be in love too, because it will now take me way less time to post anything new :)
It’s a free system (click here). Just a heads up, it does take quite a bit of time to download. I have a fairly new computer with high speed internet and it took around 12-15 minutes.
The program links up with your blog (you will need to enter your blogger username & password) and allows you way more editing options. I no longer have to worry about HTML codes, uploading my pictures in a certain order, or swearing at my computer :)
If you are comfortable with blogging through blogger, you will be comfortable blogging with Windows Live Writer. In fact, I find it to be much simpler.
Hope this helps some, if not all, of you!
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