Love Day....so much love happening in this crazy house

Hope everyone is having a wonderful Valentine's Day! I know our boys woke up early and couldn't wait to go see their friends and pass around their cards and treats! Having kids is the best excuse to get crafty and relive our childhoods don't you think? 

Feb. proves to be no different than any other month....busy busy busy. So far we have had something going on both Saturday and Sundays of every weekend as well as numerous appointments and events during the week. We did sneak away to Kansas City FINALLY to see my brother and his family. They bought a house last summer and this was sadly the first time we have made it out to see it. Its lovely and is so perfect for their family. They were incredible hosts and even did an impromptu birthday party for Benjamin since they are unable to make it to Omaha for his "official" party. It was very fun watching all the boys run around together while we just sat back and attempted to relax and catch up. The babies did their baby things....sat in their bouncers, ate, slept, pooped (or in Mila's case farted lol...the girl has serious gas power). Halley and I made it out of the house for a spin class which was so much fun (my first one ever and I didn't fall off the bike!). 

Paxton came down with a nasty bug so we were worried about him, but he did well with the travels and basically slept most of the trip. Its so hard to watch him spend entire days sleeping again. It takes me back to the NICU and all those emotions....but I keep telling myself that when I am sick sleep is what I do most of the time too. Luckily this week he is back to being awake and active! 

Grayson is the cutest and he just followed my boys around constantly. He was so happy to have another playmate his own size :) Easton has amazing patience with him (unfortunately all patience disappears when he deals with his own brother). He let Grayson help him play games on his I-pad and "read" him a few books. Benny and Grayson are hilarious. They are both 2 and you can tell. Everything is "mine" or "he's not sharing"...... one second they are fighting and the next hugging. So many emotional ups and downs in two tiny bodies lol.

popcorn time

getting a photo where all three of them are standing still is impossible

pizza night

showing Gray how to use the Ipad

reading to him

again with the iPad

Benny wanting to teach Mila since Easton was teaching Grayson

the littles

crazy cousins

The boys get super excited whenever a hotel is involved. We pretty much have the suite trashed in minutes. We stayed the first night at Tom and Halley's and the next two nights at a hotel since Brian had work stuff to get done. The boys had a blast running hallways, hitting the buttons for the elevators, and swimming non stop. Before we left for the hotel Easton wanted to write Mary Pat and his friends a letter bc he said he would miss them the two days he was in KC and not at her house. So I helped him write a letter "Mary Pat I love you and miss you....Friends I love you and miss you. From Easton" Brian helped him address it, put a stamp on it, and mail it to her. The kid is the sweetest!

Paxton liked the hotel too

checking themselves out before swimming

Ben and I talked cautious Easton onto the Ferris wheel at the Scheels

Dinosaur museum

Benny.....being Benny (Eastons shirt had a hood and he was mad his didn't....so he made his own)

showing off his new headphones from Aunt Halley and Uncle Thomas

more at the dino museum

Its always tradition that before we leave we go to Fritz's Railroad restaurant. The boys LOVE it. There are trains everywhere and a train actually delivers your food to your table. 

Ben's idea of posing for a pic 

Paxton loves KC! 

We got a pretty good snow the other week. The boys finally got to go outside and play in it and sled a bit. Mary Pat of course is amazing and took all the boys out to play everyday that the weather was nice enough they could safely play outside. The boys slept great after those days :) 

Some of Mary Pats crew

For Church they hold outreach nights each month. This month it was to make cookies and cards for the Fire and Police departments for Valentines day. We brought the boys and they had a ball. Its so fun to do things with them that are not only family oriented and fun, but also show them the importance of giving back and doing things for others. One of our Pastors, Mandy, came up to our table to chat and see how we were doing. Ben looks at her and goes "hey what are you doing here?" The child is hysterical. She just laughed and asked him the same question. 

Easton is still loving school. So crazy that we already have kindergarten round up next month. I cant believe I have to start thinking about him going to elementary school already. He continues to be amazing with Paxton. He loves to get down on the floor with him and just talk to him or help him with some of his exercises. Easton is also on a kick to do chores just because he loves how happy it makes us. The other day he had his neighbor friend, Ethan, over and they destroyed the playroom. We asked him to go pick it up after Ethan left and he ran up there and frantically put it all away. I went up and asked if he wanted help and his response was "no mama I made the mess so I will clean it". Once he was done we heard a noise and couldn't figure out what it was. Brian peeked in on him and he was using his toy vacuum to "clean" the carpet. He couldn't wait to run downstairs and tell us everything was put away and "I even vacuumed the carpet" :) He also told me last night "Mom you no why I do things the first time you ask me?" "Because I want to teach my brothers to do that"....he is so special!

Benjamin continues to keep us on our toes and constantly laughing. The things that come out of his mouth surprise us daily. As most boys do, he enjoys somehow making poop a part of each and every conversation. This morning when Easton said Happy valentines Ben I love you...Ben replied with I love you Easton and your Valentine poop! He is super sweet with Paxton. We are still working on personal space but you cant help but smile watching him crawl on the play mat so he can be right up next to Paxton. He loves to dance around and "shake my booty" for us 24/7. We signed him up for pre-school next year so I am sure that will be an adventure...Can hardly wait to hear some of the stories he shares with his class. He literally NEVER stops talking. When we were driving to KC there were moments Brian and I just looked at each other in exhaustion.....and we weren't even the ones talking. The only time he is silent is if he is sleeping or hiding somewhere to poop. 

Paxton is doing really well. We had a set back on his oral feedings due to his cold but I'm hopeful we are on the track to get his bottle feeds at least back up to what they were a few weeks ago. We met with another local family who has a 1 1/2 year old, named Weston, who also has PWS. They said he never really took the bottle, but will now take a sippy cup. Pax is definitely more active and responsive to us these days which is amazing to see. He will make eye contact and sometimes smile at us. He LOVES to kick his legs around and he's doing incredible with his head movements and neck strength. I try to focus on the positives and spend less time on the struggles he has as I know that just leads you down a long dark path. His struggles will just get more complicated as he gets older and I just cant allow myself to worry about those things just yet, and if I spent time thinking about his current struggles it almost always leads me down a path to fear for the future. There have been some breakthrough drugs in France/Switzerland so Brian of course went and got the journals of those studies from the library and our pediatrician. He has contact information for the doctors overseas so he is determined to find out how we can get our hands on some of these. Paxton truly hit the jackpot with Brian (as did the other boys and myself). He is so analytical and determined when it comes to gaining all the knowledge he can on drug trials, treatments, scientists and doctors working on these things...etc. There will never be something that could help Paxton that we won't do everything in our power to get for him. Right now we are just enjoying watching him actually play and interact and praying that the future continues to look brighter for him with all that is happening in the PWS community right now.

celebrating Brians Bday early with my parents

 I was able to be the helper for Eastons pre-school Valentine Party yesterday. Its always so fun to go into an environment I'm not used to seeing him in. Watching him interact with non-Mary Pat friends and his teacher. He really has come out of his shell this year. He's vocal, outspoken, but still very considerate and sweet. My main job was to help the kids one at a time put their Valentine's into every ones Valentine bags. Seems simple right? Of course the kids wrote their own names on the bags so figuring out what some of them said was quite the challenge. The kids wrote their friends names on each of their Valentines so again matching 5 year old handwriting on Valentines to 5 year old handwriting on bags was kind of hard. Many of the kids got confused. One boy in particular kept handing them to me and saying "this one says John.....this one says John....this one is for me, John again" I had to gently tell him that they all said "From John" since he was John and they were from him....the names of his friends were above that and he could not actually just put all his Valentines into his own bag.....it took awhile to convince him..."But this SAYS JOHN!" (sigh) His teacher has two boys Easton and Ben's age and then a new baby boy a month younger than Paxton so we had a LOT to talk about. Mary Pat got to watch Paxton during the hour I helped with the party so her day was made as well.

Treats for Marys

My 3 littlest Valentines

I hope everyone has a very lovely Valentines Day and takes time to think about all the love they have in their lives.....and most importantly telling those loved ones just what they mean to you. XOXOXO