And....now its 2019 ~ pardon our absence

Welp, remember how I said I would try to update once a month.....ROYALLY failed to adhere to that. My apologies, but well life with 4 kids is a constant state of moving from one place to another and when I do have time to sit down and devote time to something....this blog is rarely on the top of the "urgent" lists. I will do my best to be brief yet still fill you in on our December - Feb.

We had an amazing and very low key Christmas holiday. We had trips to see Dr. Miller in FL and also to get Paxton's 3rd casting done. So by the time Christmas rolled around we were ready to stay put and enjoy some family time. We did the traditional Christmas Eve with the Kalasek's and Christmas day with the French family. The French family was missing some major key players this year as my brother and sis in law were expecting #3 any moment so had to miss out this year. We missed them terribly but were so joyful at the arrival of Jack Meier a few days post Christmas.

my Christmas angels

 Paxton (and Brian) did 2 back to back flights from FL to PA within 2 weeks. I went to FL with them (as well as Sophia). As always we had an amazing visit with Dr. Miller. She reassured us that we were doing all the right things and that Paxton looked great! There is no better feeling to us than having the leading expert in PWS tell us that our child looks good. We only see her once a year now, but that one appointment fills us with hope and energy for the other 364 days until we see her again.

The BEST! She literally spent the entire 2 hour apt on the floor talking and playing with Pax

After that it was off to PA for Brian and Paxton. As you can see from the X-ray below his spine curvature continues to improve. We hate the cast...like I really HATE it. His core is super weak and the cast makes it impossible to strengthen it....so I know when it comes off we will have so much work to do...however its fulfilling its purpose in improving his spine so my 2 year old won't have to do a scary major surgery at this stage of his life. Its a weird feeling to hate something and still be grateful for it at the same time. 

daddy and Pax in post Op

The one bath he gets every 3 months.....love that bare tummy

Kalasek girls

Kalasek Cousins

Santa came

not so sure about this Christmas stuff

got some cowboy boots 

these two....double trouble

annual New Years Eve sleepover.....some pretty happy and lucky kiddos

Kid Updates: Starting with Easton.

Easton is just flourishing in 1st grade. He is an amazing writer and reader. We just had his parent/teacher conference last week and she told us that her dream class would be full of Easton's. He is KIND (which in my book is most important), he listens, he is helpful, and he is so very smart. Her only critique was that he explain more about how he comes up with his answers in math bc she thinks his way of thinking could help others. 

Easton is the BEST big brother and helper. Sometimes I feel bad bc we really do ask a lot of him and he never complains (or rarely complains lol). If Sophia is crying but I am upstairs or busy doing another mommy task he is the first to run over and entertain her, pick her up, or help her with whatever is frustrating her. He continues to be Paxton's favorite human ever. Paxton isn't a huge fan of affection so he gets his feelings hurt when Pax pushes him away from a hug or kiss, but push comes to shove Paxton would rather hang with Easton than anybody else. 

He started karate with Ben and is really loving it. It gives him something to work towards and get rewarded for his work. Its individual, yet in a group setting, which is great for him socially. He is not very competitive (unless its with Ben) so this has been a great fit for him. 

He has found a deep LOVE with football. He is always calling my mom (Nana) for football facts and to answer the millions of questions I can not. After school the first thing he does is put his KC Chiefs jersey on and practice throwing and catching the ball in the living room. 

He is incredibly sensitive and can be quite dramatic so I am learning how to navigate that. He is great at apologizing after the fact, but we are working on not getting so upset so quickly (at very minor things). I too am working on patience during these times as my first instinct is to yell or tell him how ridiculous he is being....obviously that's not helpful. I guess I didn't imagine going through this with my son but hopefully it will be good practice for when Sophia starts her sassy stage. :)

and he's lost 6 teethe in the past few months

Now Ben....where do you even start with Benny Boo. I know I always say this, but it remains true...he is our sweet and sour kiddo for sure. He has very strong opinions on things. Will wear you down to get you to answer his demands the way he would like you do. He will make you laugh uncontrollably. And he will snuggle with you and say the sweetest things out of the blue. All he wanted for Christmas was a skateboard and an awesome helmet. He got both and was SO very grateful! I cant believe in another week he turns 5. School is a bit more challenging for him than it was for Easton so we are learning how to navigate that with him. He has a hard time remembering things and is so afraid to answer wrong that he would rather not answer so it is hard for us to really know what he does know. I know everything will fall into place as it does with most kids, but its just a new world for us as with Easton we didn't really have to work with him at all and he loved learning. Ben also loves learning but when he feels pressured he just sort of clams up. He always has some dance move or song or silly saying to greet me with when he gets home from Mary Pat's.....he definitely is the comic relief that our family needs and loves. We couldn't love this kid more if we tried, but man oh man I never knew patience could be tested quite like Ben can test it. 

mask night with neighbors

loves the dentist

still fits into his costume from when he was 21 months old 

pretty excited about getting the next level belt in Karate

told his teacher he was dressing up as a Husker player....lol

his favorite spot in the house 

he dresses himself now lol 

This pic sums him up perfectly!

Now our sweet Paxton....who sometimes isn't all that sweet anymore lol. He is every bit of the typical 2 year old. We are now throwing temper tantrums and saying "NO" very clearly. Speech still is quite the struggle. He knows what he is saying to us, but its not clear or even English honestly :) He does Speech therapy once a week and that is hit or miss. The thing with Paxton is that if he isn't motivated you won't get much out of him....I mean truly that's all of us right? The frustrating thing is that with Pax we just so desperately want these huge gains....and with Paxton the gains have always been a little at a time. You would think after 2 years we would have gotten better with the patience aspect of his PWS journey lol. It's always nice when we are around people who don't see him on a daily basis bc they remind us just how far he has come. He is pulling himself up to stand which is awesome, cruising around furniture, climbing the stairs like crazy, and doing better with taking steps if we hold his hands. Still a long way to go but he truly is doing amazing. A year ago I could not have imagined that I would turn my back only to find him already up the stairs and onto his brothers bed just to steal their iPad while they are in school. He is a smart one that's for sure. He absolutely LOVES Sophia. He plays with her, hugs her, tries to "tell" her things, and sings to her all the time. Their bond will be so strong and I love watching it morph into something truly special. 

giving sister a shot

New AFO's....these pups made us hit our deductible by Jan 3rd :) 

And finally miss Sophia. This girl! We constantly refer to her as baby godzilla. She is EVERYWHERE! At 9 months old she is crawling like crazy, pulling things down from any surface she can reach, putting everything into her mouth, and making her presence known if you dare walk away from her or stop paying attention. She is such a doll......always happy (unless hungry or being ignored), and has the sweetest cheeks and thighs you ever did see. All the kids LOVE her and I'm afraid she will be spoiled rotten her entire life :) We are still waiting on some improvements in the hair department but her beautiful blue eyes make up for her lack of hair :) So fun dressing up a lil princess after all these years.

so many rolls 

girl talk with cousin Mila

Baptism...not so sure about this guy lol 

As for Brian and myself.....we keep trucking along. His birthday was last Friday so we got the kids taken care of, he took the day off, and we enjoyed a much needed full day just the two of us. We did a great job of not talking "kid stuff" and just laughed and had a great time. It was very refreshing and long overdue. Brian's job is going great. He has been traveling quite a bit but it has calmed down a lot recently. I am loving my partnership with Shaklee and having my own home based business. Its been such a blessing helping others. We continue to raise funds for PWS research and are so hopeful by all the trials happening now in 2nd and 3rd phases. We lost my grandma two weeks ago so we spent some quality time in Aurora mourning that giant loss and celebrating her amazing life and legacy. As you can see life has not slowed down for us, as I am sure it has not for you either. Thank you for your constant support, encouragement, and most of all friendship and love. Bless you all!