April snow Showers?

I know its been awhile....I have no excuse besides lack of time and energy to really sit down and download photos to my computer.....honestly thats always the hold up. typing is easy~ waiting for photos to download from both our camera and my phone is something I need patience for :) 

Feb. ended with an amazing PWS moms retreat to San Diego. Brian set it up bc quite frankly this is beyond outside of my box. I knew two other moms out of the 18 that were there but I can say I came home with 18 close friends who just "get it". We had a great time eating, laying around, hiking in beautiful San Diego, and laughing so so much! Paxton was probably the youngest of the PWS kiddos so I got a good peak into our life going forward in some ways. It was great to hear so many different opinions and experiences with some of the food issues that come up down the road. All the moms are so great and so fun and I cant wait to see a majority of them in Las Vegas for the FPWR convention in October. I am so grateful Brian set this trip up for me and that I stepped out of my comfort zone and went. 

When I got home there was no time to waste....we had a very special 4 year old to celebrate! We took the easy route and just invited some of our closest friends and family to come to a nearby hotel. the kids swam, ate pizza, and then Brian stayed overnight with Easton, Ben, and my niece Baylor. We wore everyone out (including ourselves) and there was so very little for us to personally do to coordinate the event which is a huge bonus when you are 6.5 months pregnant.

I don't even know where to start with Ben stories. The kid is hilarious ALL THE TIME! He is also the most cuddly sweet child you will ever encounter. Out of the blue he will say things like "mom I'm so excited for Sophia to get here...she's going to be adorable" or "mom your beautiful" or simply "I love you so much" it literally melts your heart and catches you off guard bc normally a few minutes prior to these comments he is arguing, complaining, or doing something you told him not to do 10 times already :) He's doing really great in Pre-K even though he says he doesn't enjoy it. I had his teacher conference not too long ago and under the question "knows his mom and dads name" he claimed he didn't know my real name and his dad "has lots of names" Im so glad he didn't elaborate on what some of those names were....Lord only knows what he would've said then. 

He is getting better about being gentle with Paxton but we still have to remind him that he cant pick him up or wrestle with him like he would Easton. For the most part Paxton adores him but he will occasionally fight back when Ben takes things from him (which we secretly LOVE to see). 

The other day Brian took the older 2 boys with him to visit a friend who had just moved homes. The adults were on the porch talking about Ben walked over and said "oh no this looks like adult time...Im outa here" We still have no clue where he got that but it had everyone doubled over laughing. His phrases are so hilarious and his timing is perfect. 

He can even sleep grumpy lol

Ben had his music program at Pre-K. He did really well until the second song. Then he and his friend, Finn, decided they would start karate punching their stuffed animals and throwing them through the air. After the program I asked why he did that. His response was "Because it got boring....this wasn't even a party" ..........this is why I am terrified for high school years with this kid lol

Easton continues to be our rule follower, perfectionist, first born. He is doing so amazing in school. He can read amazingly well and loves to read us every sign, flyer, article etc. we come across. I feel like reading just really clicked for him a few months ago and he is just soaring with it. He still loves math and is always asking Brian to create math tests for him to complete at home :) He still loves to get Ben all worked up and then claim innocence. He is the best big brother to Paxton. Their bond continues to be the strongest out of anyones. He will sit on the floor and play with him, read to him, or just talk to him for hours. The other day Paxton was doing the sign for "eat" and I said "Paxton you just had a snack you aren't hungry"...and Easton was quick to his rescue with "but mom he has Prader Willi and that tricks his brain to think he's hungry" It was sad and sweet at the same time. Although we aren't in that phase yet with PWS its so cool to see how much Easton has learned about it and how quick he is to advocate and stick up for his little brother. He has such a pure heart. The Friday before St Patricks Day he was off school so he actually got to go to Marys that day and participate in all her fun activities for St Pattys day. She turns the toilet water, milk, and anything she can think of green. They love it. We made some fruit and veggie rainbow snacks to share with everyone and the boys created a trap to get the leprechaun the night before. 

Easton also lost HIS FIRST TOOTH!!!! He has been working on this tooth for awhile now and finally allowed dad to pull it out. He was so excited about the tooth fairy. At 4am he ran into our room waving dollar bills in the air (he got $3)...we sleepily celebrated with him and then sent him back to bed lol. He is growing leaps and bounds. Im so ready for spring/summer weather to get here because his pants are all too short and I refuse to buy new ones until next fall :) 

Paxton finally got his first hair cut. I caved and took him and he looks so darn handsome now. It was a bit trickier than with the other boys as he cant have suckers, or graham crackers, or any of those other "easy snacks"...I had to bring a purple carrot wafer and hope for the best. He did really well though. Infact he is doing incredible these days. He is army crawling like a champ, more interested in putting weight on his feet, doing more baby signs and actually saying words. 

We also got him a Speo Suit. Its a compression suit that supports his mid section more. He only wears it a bit each day but it really helps him sit up straighter and tuck his belly in more. Since we found out he does have scoliosis we are trying to minimize his curve getting worse before we go see the PWS scoliosis specialist in Philadelphia in July. He will then get casted which isn't the most pleasant procedure but its proven to make curves better. The removable braces you see some kids have only helps so a curve doesn't get worse, but a permanent cast on a younger child helps reduce the degree of the curve before they go into the removable braces. Unfortunately this is looking to be a trip that Brian and Paxton do along. Sophia will have barely arrived and the idea of taking our entire family to Philadelphia for a week with a newborn is just not that appealing. We haven't made any final decisions but as of now it looks like this is how we will approach this event. 

Paxton continues to be such a happy and relaxed baby. Although he is definitely throwing fits now when he doesn't get his way or you take him out of his highchair after meal time :) Its nice to see him fight back and get a little feisty though. Health wise we have been doing great (knock on wood). He has the second part of his testicle surgery April 20th so please send good vibes and prayers our way that day. 

Both Benny and Easton has Spring break the same week (not sure how that happened but we were very excited about it) so we decided to make a trip to KC. We were able to spend the weekend with my brother's family and my parents also came down. Although Spring decided to hold off on arriving we still had fun and got the kids outside a bit. Watching Easton, Ben, and Grayson all run around is too fun! Don't get me wrong its pure chaos, but its also pretty entertaining. Sweet Mila keeps up pretty well and definitely doesn't let the boys push her around. Paxton just had a blast getting into all their toys and discovering new places to army crawl and new bins to spill :) 

We got a hotel for a few of the nights we were there as the kid are obsessed with hotels. We ended up doing a two bedroom suite so E and Benny had their own little room and bathroom. The entire reason we booked this hotel was for the pool which was shown on their website.....we checked in and immediately the boys started pulling out their swim toys and clothes. We didnt see a pool or signs for one when we checked in so Brian called the front desk....."We actually just closed our pool" As you can imagine this DID NOT go over well with the boys hahahaha. We were able to find an awesome community center to drive to one of the days so they got their pool time in. We also took a trip to Lego Land which was all Easton wanted to do while in KC.....it was fun- but a little pricey for the experience if you ask me? Our boys enjoy legos but by no means do they play with them daily...or even weekly so I'm not sure its something we would do again. And of course every KC trip must end with a trip to Fritz's restaurant so the boys can get their food delivered via train! 

Despite this photo Ben really did have a good time

Ben wished for "a light up fidget spinner" Easton wished for "that thing inside Paxton that makes Prader Willi to go away" 

While posting some photos of us around the Plaza a local family with a PWS child send me a message asking to get together. Luckily both our family and theirs was free on the afternoon after we went swimming. They actually live a few blocks from my brothers home. Their son Lucca is 3 and then they have an older son, Alex who is 8. Easton and Ben had a BAST playing with Alex and Lucca and Paxton bonded right away. We were planning to spend an hour or two talking with them and ended up spending almost 4 hours at their house! Its so nice when you meet other PWS families that are very similar to yours. How we view this new "normal" and all that it entails and our overall family structures were so similar. I definitely envision us staying close and having a lot more family get togethers. Blessed doesn't even cover it! 

I took the dudes to get their Easter photos done with some real bunnies this year. The photographer wanted to capture Paxton first....She stated "Lets start with the little one they are usually the hardest to shoot"...Little did she know how chill Paxton is and obviously she hadn't met Benjamin yet. He spent his photo shoot doing his million dollar smile while at the same time placing all the Easter eggs on top of the bunnies.....

Brian has been traveling on a weekly basis to get all his travels out of the way before baby girl arrives in 6 weeks or less....it is during these dad free nights that we do the messy and fun activities :) We painted Easter eggs and made some fun treats to share with our friends at Mary Pat's

Paxton wants in on the nightly wrestling matches now :) 

Easter was not your ideal Spring holiday this year. The boys didn't want to miss out on the annual church egg hunt so we bundled up and went. They give the kids a maximum amount of eggs they can grab...normally this is a struggle and parents are running after their kids to get them to stop filling their baskets and go back inside.....This year due to the horrific weather you wouldn't believe how quickly each kid ran outside, grabbed their 12 eggs, and willingly ran back into the church. Luckily there were many other projects and activities to do inside so we had a great time despite the chilly weather.

The Easter bunny came and definitely delivered once again for these three kiddos. I have really tried to make all food/treat related holiday events fun but food free. Its actually a lot easier than I thought when we first learned of Paxton's diagnosis. Now today the other boys can get treats and eat them and its not a huge deal for Paxton....but that will not be the case always. Since this will be the case eventually I try to just eliminate food from the event altogether. I created an egg scavenger hunt with clues inside each egg. Easton is so good at reading that he read all the clues aloud. In between clues they had eggs to find that contained money which is way more exciting to them anyways. Their final clue told them to look outside the kitchen window....when they did they saw the Easter bunny had delivered them a giant trampoline! These kids have been wanting one for ages and had convinced themselves it would never happen (I know poor deprived children right?). Unfortunately the weather still hasn't cooperated enough to allow them to go out there without coats and hats on...but even today in 35 degree weather they were out there for 20 minutes or so all bundled up jumping :) It will be so great to have this summer in addition to the pool. 

When Brian is out of town these two sleep with me...This night they apparently thought their 7 month pregnant mom should just shimmy her way in between them lol 

couch snuggles with this guy after a long day of appointments for us both was such a blessing! 

Hope everyone had the most wonderful Easter holiday and has been staying warm and healthy despite the still winter weather we are experiencing here in Nebraska! Not sure the next time Ill get on here to write...it very well could be after baby girl gets here....so please continue to keep us all in your prayers as Paxton has his surgery in 2 weeks and we bring yet another Kalasek blessing into the world! God Bless XOXOXOXO