Make-A-Wish Trip: Give Kids the World

As I wrote this up, I realized that I have SO much to say.  This post will focus on Make-A-Wish and where we stayed in Florida, Give Kids the World.  Posts on Disney World and Universal will come later.

For those of you that don’t know the process of Make-A-Wish (going forward abbreviated as MAW due to laziness on my part), I’ll try to fill in the gaps as best I can.  I was first introduced to MAW last year when Dawson was in the PICU.  A co-worker had contacted MAW for us, and she was told that while she couldn’t refer us, David or I could.  Like many, I was under the impression that MAW is only for TERMINAL kiddos, but that’s not true, although it is for children with life-threatening illnesses.  At that time, I was feeling miserable and somewhat hopeless, and thought – of course!  I had NO idea if Dawson qualified, but I knew I had to check just in case.  So in early June of last year, I started the process.  And through a series of miscommunications (through no fault of MAW), Dawson’s one true wish was granted last May.

Dawson’s one true wish was to go to Disney World in Florida.  (His back-up wish was Disneyland.  What can I say, he knows what he wants!)  Once he was medically approved, we were able to submit a few different dates that we’d like to go.  I was shooting for early October – I was hoping for slower parks and slightly cooler temperatures.

We eventually got our dates, and the planning began.  And by planning, I started reading blogs, and message boards, and buying books.  The latter was a bad idea, because I’m pretty sure I cried when I saw got the book and realized how massive it was.  Wha…what do you even do with a book that big that isn’t written by Ken Follett?  I got REALLY lucky because I ended up having someone offer to map out what we should do at the parks…complete with a map of each park, and each ride we should ride highlighted.  Huge weight off my shoulders.  I pretty much ignored the parks after that and focused on Give Kids the World.

MAW makes the trip as effortless as possible.  We flew out of Milwaukee; instead of having to find transportation there and back, they provided it.  We were given a generous expense check for meals, souvenirs, and gas money (if our airline would have had baggage fees, those would have been included, too!).  Besides the stress I initially had about visiting the parks, the trip as a whole was as worry-free as possible.

Give Kids the World (hereafter referred to as GKTW) is the AMAZING village that was created specifically for Wish kids.  I wish I could fully articulate just how wonderful GKTW is.  Villas for each family.  Hot meals included with your stay there – breakfast, lunch, dinner, pizza!  And the very best part – ice cream.  Available morning and night!  Ice cream for breakfast?  Sure!  Right before bed?  Of course!

Tuesday morning we waited for our transportation to the airport to arrive.  Riding in style, no less!

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The boys were pretty excited to ride in it!  They especially liked it when we were able to throw a movie into the car’s DVD player and they were able to watch TV.

MAW sent along with us a letter to the pilot and crew of our plane.  It was pretty neat stuff.  They boarded us first and Dawson and Wesley were able to go into the cockpit!

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The boys did GREAT on their first flight.  They were so well-behaved.  And Dawson got his first piece of gum (ever!) on descent, because he start complaining that his ears were bothering him.  (Verdict on gum: not that great.  It helped his ears, but he didn’t particularly enjoy chewing it).

When we got to Orlando, someone from GKTW was supposed to meet us, but due to some miscommunication, we missed them.  That was a bit of a bummer, but not a big deal.  MAW had rented a minivan for us, and the one we got was SO nice.  SO nice.  I really, really want one.  Seriously.  David is well aware.  I see one in our future.

We got to GKTW Village at around 7:30pm.  The timing was good, because they have orientation twice a day, and I was just in time for the 7:45 orientation that night – that was good, because the next orientation wasn’t until 9am the next morning, and I wanted to get going before then.

Walking into GKTW’s main building was surreal.  It’s a gated community, so they knew we’d be walking in to the main building, but it was still so cool to hear “Hi Henry family!” when we walked in.  The boys were both immediately handed stuffed animals (Wes a stuffed Shamu that he re-named Winter, Dawson a Mickey Mouse!).  Those stuffed animals were just the tip of the souvenirs we brought home from our week there.

They typically take a family photo outside the villa when you get there, but since it was dark when we got there, they took ours inside the lobby.

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The boys went to our villa while I attended orientation.  At orientation, we learned a little about the history of Give Kids the World, and were given our park passes – 3-day park hopper tickets to the Disney parks, 2-day park-to-park passes to Universal Studios, and a 1-day pass to SeaWorld.  In addition, we had access to a ton of other parks, including Busch Gardens and Legoland.

After orientation, I met up with the boys.  Our villa was WONDERFUL.  Huge, with all of the comforts of home.  Two bedrooms, two bathrooms.  Dawson and Wesley’s bathroom was huge, and very handicap assessable.  Wheel-in shower, large doors, sinks high enough to fit a wheelchair under.  In fact, some of it was a little too high for the boys; we ended up having to request a stool (which was promptly delivered with a smile!).  Plenty of towels, and a full-sized washer and dryer.  The washer and dryer were so nice to have; I did laundry a few times throughout the week (the weather ended up being much warmer than I had anticipated, so D ended up wearing his muscle shirts a couple of times each).  The fridge had a few cans of soda and a few bottles of water stocked our first day.

A few shots of the villa.

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We loved where our villa was placed.  Far enough from the main action that we didn’t hear most of the nightly parties that went on (more on those in a minute), but conveniently located directly across from a park.  The boys LOVED the park.  Like everything else at GKTW, it’s entirely wheelchair assessable, and was surrounded by a ramp.  Dawson and Wes were literally running laps by the time I got there after orientation.

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Before going to bed, we went and got ice cream (obviously).  The boys loved the novelty of ice cream right before bed.

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Each night, GKTW has a different themed party or activity.  Our general plan was to take advantage of these activities as much as possible.  We had plans for two of the nights we were in Florida, but beyond that, we wanted to make sure the boys experienced as much of GKTW as possible, because that was just as much of the vacation as anything.

Tuesday night when we got in was Mayor Clayton’s birthday party.  We missed that party, and it sounds like we missed a good one – there were characters from the Lego Movie there!

Wednesday morning we ran into Ronald McDonald wandering the park.  He was probably one of my favorite characters that we met – unlike a lot of the characters, he could talk, and he was hilarious (although, to be fair, we didn’t meet a ton of characters – it just wasn’t something the boys were interested in doing all that much).  It took me a minute to realize why Ronald McDonald would be there, and then I realized that it’s a pretty natural pairing.  Our family was lucky when Dawson got sick.  We lived close enough to the amazing American Family Children’s Hospital that we could easily go home, but there are a LOT of families that don’t have that luxury.  In fact, most of the families that we met during Dawson’s stay had a new home away from home at the Ronald McDonald house in Madison.  It was nice to be able to explain to the boys what the Ronald McDonald house was, and how so many families benefit from staying there.

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After a day at the parks, the highlight of the late afternoons / evenings was going to the swimming pool.  The pool was PERFECT.  Dawson had gotten his new legs a few days before we left for Florida, which meant that he was able to use his old legs (the Ninja Turtle ones) in the water.  Still, he preferred to have his feet off most of the time we were at the pool.  Typically pool bottoms are rough and coarse – a nightmare for Dawson’s still-sensitive grafted legs.  The bottom of this pool was a soft tile, which was SO nice for D.  We still worried about his legs, and they got some little scrapes on them, but it could have been much worse.

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There was also a really cool splash area that the boys had a blast in.  This area was where Dawson decided to wear his legs – you can see why.  :)

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Wednesday night the activity was Village Idol – their own version of American Idol.  The boys weren’t interested in participating in that, so instead we did Dawson’s star and got the boys their pillows.  Every wish kid that stays at GKTW gets a star added to the Castle of Miracles.  The Castle itself is pretty breathtaking.  Thousands of stars on the ceiling.  Dawson wrote his name on his star, and then on our last day, we came back to find where his star was hung.

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The picture below was taken before Dawson’s star was hung.  It is looking up at the long ceiling of the tower, with the circular part being the top of the tower.  The cluster directly below the top in this photo is where Dawson’s star was hung.

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After D’s star was hung – a close-up.  You can see the laser-pointer directly below D’s star!

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GKTW also gives each kid a pillow.  The boys both love their pillow, but Wes especially does.  He carries it downstairs each morning and sleeps with it each night.  After the boys got their pillow, they were led to a wishing well, given a penny, and told to make a wish.  How cute are they?

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We got to meet the one – the only – Mickey Mouse at the village one morning, as well as Pluto!  There were other characters out and about that morning and another morning (I heard Belle, Mary Poppins, and Goofy’s name thrown out), but the boys weren’t interested.

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Thursday night was a Winter Wonderland theme…complete with Santa Claus!  The boys visited with Santa, and then were led to an area with toys and were allowed to pick out anything they wanted.  They LOVED it.

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Friday night was a pirate and princesses party, complete treasure maps and pirate booty.  Dawson got a mustache painted on, and Wes said no way!

My favorite night by far was Saturday night, though – and we didn’t even stay for it all!  Each night dinner was served from 6pm-8pm in the Gingerbread house, but on Saturday night they had the Big Splash Bash, where dinner was served poolside, cookout style.  I can’t say enough about all of the extra things that GKTW and their staff and volunteers do to make your time there as stress-free as possible.  Never mind that all of your meals are taken care of there, but on top of that, you are waited on hand and foot and treated like royalty.  No carrying your own food to your tables – volunteers do that.  Someone checking on you every few minutes.  “Need anything else?  More food?  Refills on drinks?”  And don’t even think of cleaning up your table; they’ll do that for you.

The weather Saturday night was absolutely gorgeous for eating poolside.  We couldn’t have felt any luckier.  After dinner, once the sun went down, was a Family Dive in Movie – a movie that played AT THE SWIMMING POOL.  Genius.  I wanted to stay so badly, but the boys were exhausted, so we elected to head to bed.

The nightly activity the boys were looking forward to the most happened on Sunday night, our last night there.  As I mentioned, our villa was right across from the playground – a playground that was Candy Land themed.  Sunday night was the World’s Largest Candy Land game.  It was so much fun.  There were probably 8 stations the boys could go to to get candy, and then once they took part in the World’s Largest Candy Land game, they got to pick out a prize.

Speaking of prizes, another super cool thing about GKTW is that the Gift Fairy comes every day while people are out and about.  Some of the boy’s gifts included wooden cars, those Santa hats in the picture above, and my very, very favorite – a GKTW version of the Candy Land game!  I had read a tip from someone else that had stayed at GKTW that you will need an extra suitcase to bring home all of the souvenirs, and it was no.joke.  Between the prizes the kids got from the Gift Fairy and the souvenirs we bought, we filled an entire suitcase that we bought down there!

But I’m pretty sure Dawson and Wesley would say their favorite thing about staying at GKTW was the ice cream.  We had some every day, sometimes twice a day.  And THREE of the mornings the boys had ice cream for breakfast!  Well, with breakfast anyway.  Turns out they weren’t content with just ice cream in the mornings…smart boys!

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And there were SO MANY other things that we did while there.  Rode the little train.  Rode the carousel (multiple times).  Visited the gift shop.  Ate so many chocolate chip cookies that I’m a little sick of them.  Played at the playground every single night before bed.

I can’t say enough about Give Kids the World.  It is what truly made the trip as special as it was.  The parks were neat, but for us, the best part was a comfortable and COMFORTING place to stay when the day was done.  There were days that the boys actually asked to leave the parks so they could go back to GKTW and spend more time there!  We really felt at home while we were there…and it was better than home, because I wasn’t cooking the meals or doing the dishes.  :)  Volunteers were always ready with a smile, and in speaking with other parents, I could really tell that all of the visitors felt the same way – that being there was almost like a weight is lifted off of your shoulders.  The volunteers had cool stories, too.  While we were there, we met volunteers from literally all over the WORLD, from Canada to the UK.

As a GKTW alumni, Dawson can visit again any time.  We can never stay there again, but that’s ok.  It’s another family’s turn to experience what we experienced…a once-in-a-lifetime opportunity to be blessed with a vacation like none other.  David and I are already talking about becoming more involved with Make-A-Wish, and now we have a new goal: to become volunteers for a week there ourselves once the boys are old enough.

We are one lucky family.

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A busy weekend…in, ahem, September

(Yep, so far behind in posting that I’m posting about September)

The last weekend in September was amazing.  The weather was beyond gorgeous, and we were fortunate enough to have an action-packed weekend…and the best part is we were part of some pretty awesome fundraising while having a ton of fun.

That Saturday morning we attended a Badger Tailgate at Hausmann-Johnson in Madison.  What was the tailgate for?  It was for Kaden’s Wish – an inspiring boy who had a Make-A-Wish years ago and then made it his mission to pay it forward.  Where do we come in?  Well, our awesome Dawson was granted a Wish back in May!  Dawson’s one true wish was to go to Disney World, the same place that Kaden went for his wish (more on D’s wish later).

We were invited to the tailgate because Dawson’s wish was going to be sponsored by Kaden.  Kaden’s Wish partnered with Hausmann-Johnson to raise money for Make-A-Wish, and the turnout was phenomenal.  By the end of the tailgate, they had raised enough money for Kaden to sponsor FIVE (5!!) wish trips.  How cool is that?

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They asked me to say a few words about Dawson’s story ahead of time, and I agreed to.  I’m not sure what I was thinking – I certainly don’t mind speaking in front of a group – but I didn’t plan ANYTHING to say ahead of time.  That’s not the best idea, for future reference.  :)

David took a ton of photos while I speaking, even though I spoke for about 2 minutes.  Turns out I have a lot of ridiculous facial expressions.  Here’s my favorite:

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You’re welcome.  (Also, Dawson wasn’t nearly as unhappy in the photo as he looks.  Honest.)

Kaden’s family was great.  We had a few minutes to chat with them about Kaden’s wish trip.  It’s obvious that it had a profound affect on their family, and we left feeling blessed and happy to have been included.

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After our busy morning at the tailgate, we then loaded up the family and headed to Monroe for Green County Fall Nationals.  This was our second year attending.  Last year, Dawson was still relatively fresh from the hospital and exhausted.  He fell asleep during the pull!

This year was a different end of the spectrum.  He was wide awake, but unfortunately, it was HOT out.  And we managed to forget both his hate AND sunglasses, so he was miserable.  Luckily, he, Wes, and Parker were able to find some shade…under the trailer we were sitting on.

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Eventually, David and I sent the boys home with Bob, Nikki, Parker, and my mom, and then we had some grown-up time with some good friends.

Sunday was another busy day, starting with Dawson’s wish party – the party where Dawson’s wish grantor’s (different than his wish sponsors) give a little party for his send-off.  They brought gifts for Dawson and Wesley, including a Make-A-Wish shirt and backpack for D, and we enjoyed Sugar River Pizza (once they found out what D’s party was for, they not only came in early to make the pizzas, but also DONATED the food…and they are seriously my favorite pizza place!) and a Disney Planes cake.

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Sunday afternoon was a birthday party for one of Dawson and Wesley’s friends.  I do not know where Dawson and Wes found the energy for the party – it was at a gym, so they ran around for an hour and a half straight – but they had an absolute blast.  And went to bed early that night.  Whew.

I knew that before I wrote about Dawson’s Wish Trip (we went from Oct 7-13!), I wanted to get this post done, because it was important for me to recognize Make-A-Wish, Kaden’s Wish (Kaden, and the entire Stark family), Hausmann-Johnson, and Green County Fall Nationals.  Because of all of their generosity at some point in the last year+, our family has had some pretty incredible experiences, and I just had to get it out there!

I’ll be back soon(ish) to update on our AMAZING trip!

That Time of Year Again

It’s that time of year again – Badger football season!  And Badger football season means we get to break out our giant lawn Bucky!  Last year I showed all of the annual photos we’ve taken.  Well, here are this year’s!

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Their own version of Jump Around

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The kiss was entirely unprompted, I swear.

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School has been going really well.  Wes was pretty nervous about 4K, but he’s doing great.  And Dawson loves kindergarten.  It’s pretty tiring for him, though, so nights have been pretty tricky.  Still trying to find a good balance of getting out his energy before bed and what time exactly he should be going to bed, but we are getting there.

Health-wise, Dawson is doing pretty well.  The sore that I mentioned at the end of my last blog post (almost two months ago…I know, I know) ended up getting a staph infection that luckily went away very quickly with antibiotics.  Unfortunately, D has yet another sore, this time on his left leg, that is also infected.  He is on antibiotics, and hopefully we’ll see that heal up VERY soon.

Dawson is currently in the process of getting fitted for his new prostheses!  He’s pretty excited.  This pair that he is in still works ok, but we have been making a lot of adjustments to them in recent months, which is a sign he’s ready for a new pair.  Dawson goes in next Friday for another fitting (including trying out new feet, which will be a little more dynamic and allow for more “bounce” in his step), and if all goes well, they will be sent out sometime the following week to be made into his definitive legs.  Stay tuned to see the design that go on this pair! (Hopefully that will keep me honest and force me to post!)

Next weekend is again Green County Fall Nationals.  We went last year and had a blast, and we knew we’d have to go back this year.  If you are around Monroe next weekend, I highly recommend you stop by.  It’s a lot of great people, and GCFN supports a lot of people in the area that really need it.

Happy September!

Oh, Hi There!

Where have you been the last few months?  Just kidding, I realize I have been completely MIA.  It’s been intentional.

I struggle on a regular basis with this blog and it’s content.  I put a LOT out there last year.  Dawson knows the blog exists – to an extent.  But some of the things I’ve shared?  In the heat of things last year, I shared what I considered “our” story.  The more I think about it, the more I realize that it is Dawson’s story: as told by me.  And I no longer feel all that comfortable with it.  I think to 3, 4, 5, 6 years from now, and him or his friends searching “Dawson Henry” online (because come on, we’ve all searched ourselves at one point or another!), and coming up with this blog.  I’m not ok with doing that to Dawson.  I already HAVE done that to him.

So, I go back and forth.  Do I just delete the blog?  Probably not.  I’m glad that I documented what we went through.  Do I scrub it some, make it less over-share?  Maybe.  But then I lose some of that raw feeling.  Do I make it private, password-protected?  That seems likely.  I’m not there yet, but I’m getting close.

In the mean time, we have really had an awesome summer.  We’ve done almost everything I wanted to do last year, with a few of those things that we hadn’t done yet still to come.  I could share hundreds of pictures, but I’ll just pick out a few.

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T-ball was fun, but I think we are ALL pretty glad it’s over!DSC04295

With my little sister Maria and my big brother Bob.DSC04318

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Pontoon rides at the Lake House!DSC04350

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Remember that awesome Mother’s Day package I won? The above photo comes from our shoot with Kate Bentley Photography out of Eau Claire.  This is probably my favorite photo of the whole summer.

The next two photos were taken at my company picnic.  The boys probably spent 30 minutes in the bounce house – good thing no one really joined them, they were wild and having a LOT of fun!  The second one is another of my favorite photos of the summer!

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Health-wise, Dawson is doing well.  He had a weird day yesterday (a couple of random bloody noses, a nasty headache that kept going away and coming back, and he finally topped it off with a 101 fever last night), but otherwise both Dawson and Wes have been pretty healthy, thank goodness!!

Dawson has been dealing with some issues with his right leg.  He has had a sore near the end of his leg for a month now.  He has been taking a break from wearing his legs for the most part, with the exception of the last week, when he’s been asking to wear them more and more again.  We are easing back into them, but the sore isn’t completely gone, mainly because even when he’s not wearing his feet, he’s moving around constantly and banging the sore.  Thankfully, we’ve adjusted the fit of his legs and that doesn’t seem to be a problem.

Back to school in just over a month.  And we are taking an exciting trip in October that I can’t wait to share…but I will wait for another day.

Summer Vacation!

Summer vacation is officially here!  Today was Dawson’s last day of school.  I honestly don’t think he realizes just how exciting that is for a kid quite yet!

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He looks so grown up!  I just can’t believe it.

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It is virtually impossible for me to get a decent photo of those two these days!

Even though summer vacation officially started this afternoon, we’ve been pretending it’s summer for weeks.  Camp fires.  Outside almost every day after school.  Playing in the sprinkler.  Playing with the neighbors.  Playing with Parker.  Playing.  A lot.

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Dawson had a busy Monday earlier this week.  He initially had FIVE different appointments scheduled.  I cancelled one of them (PT) late last week.  The morning of his appointments, they called as we were getting ready to walk out the door to cancel his first scheduled appointment, which was actually a huge relief.

So Dawson “only” had 3 appointments on Monday.  He had another ultrasound.

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No change in his kidneys.  That’s great news! 

He had another Urology appointment.  They decided to try upping his dosage one more time on his pill for his bladder.  We honestly haven’t seen a ton of improvement at the dosage he’s at.  We will go another month on this dosage, and have a follow-up appointment for July 7th, when we have to decide where we go from here…what surgical procedure we want to try.

Our last appointment was with Dawson’s burn surgeon.  I wanted one last appointment to check everything over – skin on his legs, his back, ask questions about meds.  We got really, really good news from him.  Dawson’s skin on his legs is AMAZING.  It will always look like graft skin, and it’s going to be sensitive and easily hurt for a long time, but from a healing standpoint, Dawson’s body has over-achieved.  His skin is soft and pliable.  If I put my fingers on his legs and move them around, the skin moves WITH me.  That didn’t happen before January really.

We also got the ok to wean Dawson off of the pill that he currently takes 3x per day.  That’s awesome.  If we can easily wean that one, he’ll be down to 2 pills in the morning, and just 1 at night. 

We are just so grateful for this time as a family.  The boys are going to bed later than they should because I want them to enjoy as much of this summer as possible.  Is it possible to make up for last summer in this summer alone?  We’ll see.  :)

Throw Back Thursday

One of my favorite videos of the kiddos, taken in September 2010 (Wes was 6 months old, Dawson was 22 months old). Dawson is making Wes laugh just by looking at him, and I love the way Wes stares at D, just waiting for D to pay attention to him.

PS – Sorry for the shaky quality. :)

Catching Up: A quick article in today’s Wisconsin State Journal

David is off to the store to pick up a couple of copies of today’s Wisconsin State Journal.  They have done a follow-up on Dawson!  Read it here:  Catching Up: Belleville boy active with prosthetic feet.  David Wahlberg wrote Dawson’s initial story, and he did an awesome job on this follow-up, too!

I think there is a photo associated with the story, but I can’t see it on the computer. Instead, here are the photos that I sent him to choose from…that’s right, these were all so awesome that I couldn’t make the decision myself!  :)

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Doing the rock wall on our play set at home.

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Dawson and Wesley getting ready to race down the slides

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Hope you are all having a great Memorial Weekend!

Edit – Just got the paper – second page!  No photo, so good thing I posted these 4 awesome ones!  :)