Kevin, you're such a disease!

Greyson is currently turning the corner on being diagnosed with bronchiolitis. He sounded so congested and rattly in his chest this past week. You or I would clear our throat or cough to bring that up.. but Greyson's condition gives him low muscle tone and he is unable to cough. Instead of bringing that gunk up, it stays and hangs out in his vocal cord area and it becomes dangerous when it gets into his lungs and builds there. I've had my fair share of bronchitis and I know how yucky you feel, so we have had a quiet week with lots of pj days and snuggles. We are now a week after the visit and he's starting to feel better. He is still a little gunky, especially at night but it's much better than it was.

The past few nights we neb before bed and hope we can help clear some of that mucous. We end up in his room for hours just suctioning. We haven't gone to sleep until after 1230-1 the past few nights. We spent about 3 hours in his room Wednesday just suctioning trying to get it out for him. Tonight he seems to be doing better.

I worked today and I was pretty tired this morning. I was up until 1130 or so and had to be up at 630. I try to make sure I give myself enough time to get to work on time but still give Grey his 8am meds and first feed, that way Adam can sleep in on those days. I came home from work and Adam offered to help me clean the house. He cleaned upstairs for me while Grey and I napped in the living room. It was nice! I love those naps with my baby.

Christmas is one week away- and I cannot believe it. This month.. this year.. has FLOWN by. I feel a little unprepared for Christmas. We aren't doing "gifts" this year like normal. This year has been too hard on us, emotionally, financially, and just mentally. I didn't want to be a scrooge but thankfully my family understands. We are all at the age too where if we want something or need something.. we go get it or save for it. I want to spend time with my family and my son spend time with our families. That's what I want. I want to make memories and take lots of pictures, watch Christmas movies, bake cookies, and just be.

The other day- Sunday- we put Grey in his ppod and hooked his gtube up for his lunch feeding. As soon as the food started going in, we got these smirks and some giggles!!

We still use his Lightz of Hope party light at night and now when we neb too!

My sister and niece arrived to Green Bay on Monday. I picked them up from the airport here in town and the first sign I saw when I walked in the door was for Culver's 🤣 nothing says Welcome to Wisconsin like Culver's. It was a late flight so it was nice and quiet until their flight landed. Also noticed the lush greenery! Hahaha

They spent the week unpacking and getting settled. My parents flew in on Thursday and my niece became a dog-Mom Friday! Meet Nalle! (Pronounced like nah-lay; it translates like teddy bear from Finnish!)

These are just random pictures I took this week. Greyson's sweet little footer, his bedroom-view from the glider I am currently sitting in, and the secretions we sucked out in ONE night. From bedtime until he woke up. Poor kid was so congested.

I caught this sweet moment the other morning when Adam went to get Greyson when he woke up for the day.

When Adam and I got together we combined a lot of our Christmas decorations together. One of my favorite things he had was this A Beary Merry Christmas advent calendar type thing where every day you move this Velcro teddy bear around the house (according to that day on the bottom) to help him find Christmas. Now Adam gets to share that tradition of moving the bear every morning. The cross stitch in the frame behind them was made by my Grandma Kent who passed December 2020. Another one of my favorite things.

Little flash back for you! This was December 2019. Grey was a month at this point. He was so tiny!

I have been thinking a lot today about how truly lucky I am to be Greyson's mother. Yes, I would take the tay-sachs away in a heartbeat, but man, this kid is one amazing kid. I'm not quite sure how, but I am going to make sure that his life changes the world. I will be on a mission for the rest of my life to share his story, the importance of genetic testing, and advocating for families like ours. We are blessed to have him in our lives and I'm so proud to be his Mama. Not every day is a good day, and I feel like I share a lot on my not-so-good days.. but today is a good day. I had a snug-nap with my son, it's Christmas time, and I just love him with every ounce of my being. Every sweet noise he makes and every oooh sound he makes. He is so loved and I just hope he can feel how much love surrounds him. I would do anything for him. Life isn't always pretty, especially with tay-sachs. But in this moment, in my son's room, listening to his sleeping coos.. I just feel like my heart is going to burst.

We have some fun Christmas things coming this week- so I will make sure to post this week with all the pictures and videos :)

xoxo,

Kim