Bryce’s Christmas celebrations — so far! — have been really special. We started on Monday with Mommy’s side of the family. Our whole family got dressed up for family photos that morning (thanks so much to Jenna’s high-school graduating class for the generous gift) and then spent much of the day together. We had a delicious dinner and then opened presents; Bryce got SO many toys that make LOTS of noise, including a dancing Santa, “My First Barn,” and more. He loves lights and noise, so many of his presents hit those requirements 🙂
One of the highlights of our family Christmas was Santa’s surprise visit. Around 5:30, we heard jingle bells from outside and then “Ho, ho, ho!” Bryce and cousin Elizabeth were mesmerized by Santa and all the chaos he created; cousin Maddy ran away and hid as soon as she saw who it was. We got lots of great photos of Bryce-ster with Santa Clause, plus a couple with Mommy and Daddy, and the whole family. It was really quite fun and brought out the child in each of us.
Kyle, Jenna and Bryce attended Christmas Eve mass with our parents at St. Mary’s in Glen Haven (the church where they were married and Bryce was baptized), and then stopped by Great Grandpa and Grandma Mezera’s afterward, per tradition. I don’t think they let Bryce try the oyster stew 😉
Santa made another stop to Papa and Grandma’s that night and they opened his gifts Christmas morning. The picture above is of our sweet little guy on his first Christmas. That afternoon, they stopped by the Mezera Family Christmas at Great Uncle Jeff’s and Great Aunt Julie’s before heading off to the Kuenster Family Christmas at Great Grandpa Neil’s and Great Grandma Rosemary’s. It was a busy day, but I’ve been told that Bryce handled it very well. He got lots of special attention and love from everyone.
They’re all spending a few more days at the farm before heading back to Dodgeville and then on to Lodi and Mosinee for quality time with the Heckendorf side of the family through the New Year. They have Uncle Kole’s and soon-to-be Aunt Kristen’s couple shower on Sunday and then it’s time for more Christmas. Uncle Keith and Aunt Mia will be back again after the Belk Bowl between the North Carolina Tar Heels and Cincinnati Bearcats. Go Heels!
In regards to how Bryce is doing: He’s OK. He’s had some really rough days (and nights) and some good days. He’s definitely gotten fussier over the past month, and they do think he’s in some pain. He’s now on low doses of pain meds and muscle relaxants to help with spasms, and those seem to be helping. He likes (and perhaps needs) to be held most of the time, and it’s rare that he gets put down. Jenna, Kyle or my mom were walking or bouncing him most of the time when we were there. Once he’s asleep, they sit down and sleep too — as you can imagine, they’re quite exhausted.
Bryce is eating OK: He’ll usually take an ounce or two by mouth, and then they supplement the rest through his G-tube button (to be noted: Jenna and Kyle have an amazing system in place and are handling this process so well). After talking with their contact in Pittsburgh on Tuesday, they realized they may have been overfeeding him, and that may be part of the reason he’s been so fussy (lots of tummy aches). They’ve been cutting back on ounces/day since then, and last night he had his best night in a few weeks. Let’s hope tonight is the same.
Speaking of Pittsburg: On January 7, Jenna, Kyle, and my mom will be heading to the Children’s Hospital of Pittsburgh to have Bryce evaluated by Dr. Maria Escolar. They’ll have three full days of assessments, and will learn how to proactively approach his care in the weeks and months ahead. We’re anxious to get him out there and seen by this Krabbe specialist sooner than later.
I think that’s it for now. Check back again soon for more updates on our favorite little man. Merry Christmas and Happy New Year to all of you!