Paxton's Welcome Home...Just in time for Halloween

Well we are home and all under one roof. At times we long for the quiet and peace of the hospital room :) but overall we are more than happy to all be together. It was a VERY emotional last week btw leaving Methodist Women's Hospital and his surgery at Children's Hospital, but we got through it like we always do. It was SO very hard to say goodbye to the special people at Methodist. They know Paxton inside and out (literally) and did the best job taking care of him, taking care of us, and making our stay there seem more like a home than a hospital. When we packed up our room and the medical transport team from Children's showed up there were many tears & hugs. It was hard to see my baby (with an IV in his head :( ) get put into an isolate and loaded into the back of an ambulance. 

tearful last selfie with Pax in our Methodist room 4210

strapping in...ready for take off

so chill

his ride

thumbs up...ready to go

When we got to Children's I had a bit of a meltdown. The room was tiny, I didn't know anyone, they didn't know Paxton, it was very much a hospital type feel, and I was (am) still hormonal on top of being worried about his surgery. Brian helped calm me down as best as he could and we just focused on meeting all the people who would be caring for Paxton and doing surgery on him.

heading to surgery

His surgeon and anesthesia team were amazing. They explained and re-explained everything to us as many times as needed to make sure we were comfortable. My parents were there as they wanted to snuggle on Pax before the big event and they wanted to make sure Brian and I had some extra support if/when we needed it. Paxton made it through the G-button surgery with flying colors. We actually expected him to come back to his room on some type of breathing assistance as kids with PWS tend to have trouble coming out of anesthesia. He once again surprised us all and was breathing strongly on his own right after surgery. He's such a tough little guy!

His button

We stayed 2 more days to make sure he recovered well and allowing Brian and I some time to feed him using the tube with nurses available to help answer questions and watch to make sure we knew what we were doing. Its a lot scarier than it looks but Im not going to lie there have been quite a few spilled milk incidents. Paxton doesn't seem to mind and Im sure its quite amusing to him to watch his parents curse about wet blankets and having to remeasure milk amounts :)

coming home outfit

We were more than excited (and a bit nervous) to get him home. We came home Saturday. Just shy of his 6 week bday. The boys were outside running around screaming "wheres my baby wheres my baby" Brians parents had watched them and had them out front and ready to see their brother the second he arrived. They were smitten instantly.....and VERY clingy :)

The sign Brian had made for our house! (its still up by the way)

first family photo of all 5 of us

Ben is very possessive over his brother

Easton is amazing with him

Right away Easton kept asking "mom can we show him the playroom? he's never seen it before" and typical Ben wanted to know "why him not talking mom?" So far there have been no signs of resentment or jealousy which is great (I was more concerned about Ben than Easton in that department). Due to PWS Paxton's schedule is sleep, wake up and move a bit no the floor, eat, and sleep again. Very little crying at all as it takes a lot of energy. The only times we get any type of fuss or crying from him is if his surgery site hurts him, he has reflux issues, or he has some gas he's fighting to get out. Like I said those are very few and far between. Between juggling doctors appointments, pumping around the clock, and wrangling the other two boys while tending to Pax I am one tired mama.

Easton and Ben are doing great. They are both super sassy and talking back to us is now a thing. I have to say their comebacks need some work but Im sure those will improve with age. Ben just basically says what he hears Easton saying to us, and Easton LOVES to see how far he can push things. He is very stubborn and has begun a phase where he wants to be in charge. Not letting him do what he wants when he wants doesn't sit well with him so those are the moments when he has to spend some time alone in his room. A few times he has actually fallen asleep which is a win win for any parent dealing with a feisty 5 year old :) He really is the sweetest kid and a great helper & listener for me, but in those moments when he chooses not to obey or talks back to us I have to fight my urge to yell as that doesn't help anything (although it would sure make me feel good lol). Benjamin is a whole other child. Listening is definitely not one of his greatest strengths. Making us laugh is definitely what Ben is good at. The child never stops talking and will rationalize pretty much anything.....For example last night
me:"Ben did you poop in the bath?"
Ben: "yes"
me: "we don't poop in the bath do we"?
Ben: shakes his head no
me: "why did you poop in the bath?"
Ben: "bc i don't like to take a bath"
Prime example of Ben and his personality. He keeps us on our toes and laughing. And right now laughing feels wonderful! Easton and Ben still fight like dogs, but can sit and play together and make each other laugh til they are crying the very next second.....they are brothers!

Easton helping Paxton play a game with us

checking on his lil bro

We were so happy to be home by Halloween. The boys LOVE the holiday and frankly I do too. We were able to make the Trunk or Treat at our church and spend Halloween at my brother and sister in-laws house like we traditionally do. 

Luigi Easton

Mario Ben

Trunk or Treat fun

Easton had his pre-school Halloween party on Halloween and since Brian had the day off he was able to go and help out. They had the best time and Easton always LOVES to have Brian come to school with him. I got the raw end of the deal by having to take both Benjamin and Paxton to my 6 week post-natal appointment. It wouldn't have been so bad if things would've been on time, but honestly no matter what kind of doctor you are seeing they are NEVER on schedule. We sat in the waiting room and I exhausted all the games and snacks I had brought to buy me some time. By the time they called us back into the room Benjamin was all juiced up. The nurse found him halarious and I just took deep breaths. After stripping waist down and covering my bottom half with a gown we waited....and waited....and waited. Ben wanted to play with the blood pressure cuff, kept banging the feet stirrups open and closed, and found how to turn on the flashlight thats attached to the exam table. I may or may not have been chasing him around the room holding the gown around my waist. If that wasn't a mom moment Im not sure was. Good thing he's so damn cute!

mummy making at pre-school

his class....my son of course is the one posing :) 

then they got to play with it and make a mess

my view as Easton and Brian partied away :) 

Like I said we headed over to Patrick and Angies for Halloween festivities. She has a whole menu Halloween themed and had some fun games for the kids before we made it out to Trick or Treat. Each year the kids get more and more motivated for "more candy" My parents came too which was great because we didnt want to take Paxton outside while we went around the neighborhood so she stayed at the house with him. 

Little toad

Mario Family: Bowzer-Mario-Princess Peach-Toad-Luigi

Nana and Pax

the best photo I could get of Baylor and E

my silly boy

Angie and her creative games :) 

the boys and the annual witch photo :) 

Brian left for a one night trip today so we will see how this goes flying solo with 3. My mom came over this morning to take them to daycare and we have the guest room set up if I should need more help. The boys are usually pretty good when they know I need them to be so fingers crossed tonight is no exception. Luckily we have no doctor appointments or in-home care coming to see Paxton today which will help. Next week Brian is gone all week but on Wed. Paxton, my mom, and I fly to meet up with Brian. We will meet in Charlotte (he will be coming from Los Angeles) and then my mom, bless her heart, will just fly back to Omaha while Paxton, Brian, and I take another flight to Florida. We get to see the PWS specialist and hopefully get approved to start the Human Growth Hormone treatments for him. These will help him build muscle tone which will help with his feedings and his overall development. She is incredible so I feel so blessed she was able to squeeze us in as well as welcome us as a patient. Hope everyone had a fun and safe Halloween. XOXOXOXO