Kalasek Kiddos: FPWR convention, One Small Step Walk, & chasing 3 boys

At the end of August we flew with Paxton to Indy for the Foundation of Prader Willi Syndrome convention. It was INCREDIBLE to say the least. I won't get into it much as I wrote all about it on my Snap23 blog that is just devoted to Paxton and updated on his PWS journey. In short, we met some amazing families, listened to the best doctors and scientists explain what they are working on to help our kiddos, and got a lot of helpful information to help us along our journey with Pax. It was sad to leave everyone after just a few short days. It was so nice to be in a room full of so many people who just "get it" and offer to advice and encouragement to families even newer to this than us.

Paxton's got more frequent flyer miles than both the other boys combined (and then some)

Dr. Miller giving Pax lots of 1x1....shes incredible!

a handful of the moms I met

Jake and Paxton sporting their super hero capes :)

So happy to be with "his people"

Hudson and Stephanie....they are awesome!

Best daddy award goes to this guy!

a little private PT session during one of the sessions

giving advice, encouragement, and sharing our story

My crazy Benny boo started Pre-School last Wed. Honestly we were all kind of holding our breath. This kid doesn't do anything he doesn't want to do quietly. He kept telling me that he wasn't going to go along, and that Nana was supposed to go with him. While Brian and I were out of town my mom took him to his Pre-K open house so in his mind she was supposed to always chaperone him during school. Well we got him all excited with his "ready confetti" the night before and prayed to good results the next day. I made Brian take him out to breakfast and then do the drop off. I figured it would be a lot less tearful if dad was the one saying good-bye. He did great! No tears (for either of them). He loved his class, his friends, and of course the times they just go to play. Today was day 2 so Im hoping for a similar reaction when I get him from Mary Pat's. He is fully potty trained during the day now which is life changing. He is so great at telling us when he needs to go and has little to no accidents each week. He for whatever reason feels like the bathroom on the main floor is the only one he can use so there are a lot of unnecessary emergency runs down the stairs holding himself until he gets to that particular bathroom. We literally have 4 other bathrooms upstairs that he could use should he need to if he is up there.....sigh.....
This kid also enjoys shaking his booty, making fart noises and jokes, and using the word poop whenever he can fit it into a sentence (which is about 99% of the time). He honestly is the funniest person I have every met. He is always "on" (if he's awake) and loves to get reactions from people. He is rarely shy and has a heart of gold. He gets angry quick but can get over it in a blink of an eye (or a promise for a penny or tootsie roll) Gotta love the kid!

wants to be a storm trooper when he grows up! #lifegoals

backpack showdown

apple muffins for MaryPats

asked him to show off the back of his bag....he automatically assumed the "time out" position....he knows it well!

Mrs.Kinworthy's M-W class (same teacher Easton had his first year of Pre-K)

"helping" me clean

so handsome.....and his fathers son.....always with a dust buster

snoozing with Pax at Mary's

Brian and I got a quick NYC get away that was awesome a few weeks ago! If you've never been GO!

Loves doing homework (most of the time)

Easton continues to LOVE school. He's got a handful of buddies he gets excited to see every single day. I get about a ten minute time frame to get a lot of info out of him after each day which is nice. He also loves being home with me for a couple hours without Benny :) I swear he has aged years since starting school. The things that come out of his mouth and his maturity is unbelievable (and kind of makes me sad). He is slowly learning that not everyone is nice and the world isn't a utopia by a long shot. He has told me a few stories of mean things a girl has said to his friend Hannah and how some of the older boys (4th graders lol) sometimes punch the little kids backpacks during walking club before school. So hard seeing him slowly understand things we try to keep from our kids as long as possible. He is still my rule follower and great listener. Now that doesn't mean he doesn't fight me at bedtime or when its time to turn off the I-pad. The fighting btw him and Ben is quite frankly annoying most days, but they also play amazing together when they want to. Its definitely a true brotherly relationship. As the oldest Easton already feels like "I get blamed for everything." However when his brothers need him he is there 100%. When Ben was nervous about pre-school Easton age him the best pep talk in the backseat of my car.
"Benny when I went to Kindergarten the first day i was all alone. I knew no one and I let a few tears fall down but once I got inside and the day started I LOVED it, and thats how it will be for you at Gingerbread House" I tried so hard to just keep driving and not make a big deal of how touching that moment was knowing that the second I acknowledged it they would go back to punching and poking each other. Also, the other night as Easton and I were laying in bed together just talking I started snuggling him and said something along the lines "I love snuggling and talking to you. someday when you are older you aren't going to want to do this with me at all" and he goes "mom don't say those things it makes me sad" HEART EXPLOSION! I just adore this kid. Even when he is upset with us and being sassy he makes me laugh. The other day he was "annoyed" with me as he put it and he goes "I bet when you and dad go no vacation you said 'Im so glad we don't have the kids' " hahahaha
He continues to be the only one who can make Paxton belly laugh and smile 100% of the time. He doesn't even have to work for it like the rest of us. We love witnessing the special bond those two have.

my three sons

Pax is so happy he's hanging with E

another dust buster photo...clearly they know how much their dad hates crumbs

Paxton is doing awesome. He does PT/OT twice a week and we are also starting swim therapy. In a few weeks we will also start speech. This kids calendar is jam packed always but it needs to be to get him to where he needs to go. He's super smiley and sweet and loves his brothers so much. He still loves being at Mary Pat's once or twice a week and comes home exhausted from all the stimulation. We just love him so much.

Last Saturday was our first official One Small Step Walk to raise money for FPWR. The amount of love, support, and generosity we have received thus far is incredible. Paxton is seriously in the top 5 of the country as far as donations right now, and with other money we know we have coming in he has the potential to be in the top 3! He has no clue how loved he is.

We worked super hard the past 6 months getting ready for the event and it could not have gone off better. We had no glitches and the weather was perfect! Thank goodness for incredible family who stepped in to work some of the booths and help set up and take down after the event. We couldn't have done any of this last year without them and certainly not this event. We are so proud of Paxton and ourselves for plowing forward to do all we can to help him live his best life. There are many ways you can go when you receive a diagnosis....and even though its rare so many people are affected by rare disorders across the country. We never have felt alone in this and we know there is so much hope for Paxton's future. With each $ we raised we will keep those doctors and scientists working so hard to help Paxton's chances of living an independent and symptom free life. In the meantime we continue to work with him to get stronger and build a healthy foundation for him to function in the world as the amazing kid we know him to be. Thank you all who have donated, came to walk, sent prayers and well wishes, and offered encouragement. We are humbled and grateful for you all! God Bless!!!!