Kalasek Kiddos: The BIG ONE!

So many emotions about this big milestone birthday for our little Paxton Dean. Its hard to wrap my head around these past 12 months. I know the typical thing to say is "it went so fast" and thats all very true but there are literally parts of the past 12 months that I cant even recall. Part of the reason is I won't allow myself to go back to that place of fear, anguish, anger, etc. Those 6 weeks in the NICU did not go fast, but they did not go slow either. They just existed. I couldn't tell you when one day ended and the next began. I was in my little safety bubble of a NICU room. If Paxton opened his eyes for 10 seconds in a 24 hour period that was THE BEST DAY! I would rush down the hall to see if Natasha's name would be written on the board as our main nurse. My new world and family existed on floor 3 and then floor 4 of Methodist Women's Center....then there was the adjustment of being home, G-tubes, therapy/therapists, oxygen machines, nightly shots of growth hormone, and supplements. I feel like I "woke up " around month 5 or 6 when the things listed above became routine and no longer confusing or scary.

I can think back to therapy sessions where we literally just stared at him and dangled toys to see if he would even move his head from side to side or at least track with his eyes. Just yesterday we had a session of him sitting up in the pool at aqua therapy for 2 minutes unassisted.....its crazy. This kid is more than a fighter he is a warrior. He works hard, processes everything, is tough as nails, and the happiest soul Ive ever met. His smile is so genuine and will melt the coldest of hearts. Everyone told us that the first year is the hardest. Ask me in 5 years and Ill let you know if thats true or not. Although this first year was mighty tough it was also so so beautiful. Brian and I learned just how strong we are individually and as a unit. We learned how incredibly compassionate Easton and Benjamin are. We always knew we hit the family jackpot with the French, Kohler, Gremm, Kalasek's but we learned just what a loving, generous, and faithful army they truly are. Paxton continues to do things that the outdated PWS info will tell you he would never do in his lifetime....and at 12 months he is doing some of those things. We will always fight for him and with him, but on his 1st birthday we took PWS out of it. This was a day to celebrate 12 months of Paxton. Yes PWS is part of who he is, but he is so so much more. He is rocking it at P.T. these days and we get to meet another Elkhorn Early Intervention teacher who may work with him Friday. The therapies will keep increasing as he gets older, but that also means he is able to do more and reach more "inch stones". We know he does things on his own time frame. Energy level continues to be his biggest hurdle and theres only so much we can do to help with that. We know when to push and when to back off.....and if we forget he lets us know :) It was a true blessing to have so many friends and family gather at our house for his big day (especially since it was after the One Small Step Walk). Although I will NEVER plan a fundraiser and a party on the same day again (lol) it worked out this time to have so many friends and family come from all over and celebrate his special day with us.

Thank you to all who have let us lean on them, prayed for us, watched our kids, donated to FPWR, cooked us meals, sent gifts and cards, or just called/texted to say "I'm thinking of you" or "your doing great." Having such a massive support system has been everything to us. We know how blessed we are and we hope you know we try everyday to somehow pay it forward. We are so proud of Paxton and to be his parents. We feel lucky we get to share him with those we love most and watch him impact others as well.

Jeremiah 29:11

For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.