Life is tough my darling, but so are you.

I think I've said this before, but man, it's true. We are doing well but then life has a way of reminding you that it is completely and utterly uncontrollable. You can plan, you can prepare, you can do THE best you can to be ready, but it will find a way to knock you on your ass.

Grey was doing really well since his last cold. He was stable and it was wonderful. Then last week, beginning Thursday, he got sick again. I'm assuming it's from the change in weather and there is some respiratory bugs going around. Friday and Saturday were so rough for him. It was constant suctioning and meds trying to help him clear the gunk. So Much Suctioning. He was miserable and you could see it on his face. I was scheduled off Monday, Wednesday, and Thursday this week and I ended up taking Tuesday off too. He was not feeling well and I knew Adam would need an extra set of hands. Plus, to be completely honest, I was drained. I was exhausted and just tapped out. I've been feeling a little mentally exhausted the past week or two and Grey getting sick like he did was just the cherry on top. I haven't been sleeping well and I slept in Greyson's room last weekend because he needed so much suctioning. It was too hard to sleep in our room and constantly walk back and forth between our rooms every time he coughed. We had his baby glider up there and ended up moving our leather recliner from our basement up in his room. It's more supportive if we need to sleep with him on our chest and it's much more comfortable to sleep in than the glider. It's a little bulky in his room but we need comfy :) and it feels safer for us sleeping with him too.

It's been a week since his cold started and he's still pretty gunky. He looks like he feels a little better but not back to normal yet. He's been pretty tired (more than normal) and has been doing well coughing but still doing a lot of suctioning, Definitely not as much as last week but more than normal. Trying to just take it day by day and make sure we keep his little lungs clear and watch for any fevers. We had family in town last week while his illness flared up too. My middle sister, Stacey, came to town for a visit and so did my in-laws. Steve, Jill, and Courtney and my in-laws stayed with us. We had a nice weekend, minus Grey being sick. Courtney stayed until Monday and is searching for a home here in Wisconsin too. She went to a ton of showings this past weekend while she was here. The rest of the week after everyone left was just kind of survival mode. We had to do the normal stuff like groceries, cleaning, dishes, laundry, etc. We finally cleaned out our garage to make room for everything. Adam had class Monday and Tuesday (which he is crushing by the way still!) and I applied for FAFASA and scholarships so I can enroll for summer classes too. It's been a lot. We've been trying to listen to ourselves too- taking breaks when we need and taking mental health breaks.

One really amazing thing is that our CLTS waiver purchased a Wonderfold wagon for Greyson and it arrived this week. I was searching for something that would be more comfortable for Greyson for walks than his wheelchair. His wheelchair is great for quick things or smooth floors.. but any bump and he feels everything. He jostles around and I just feel like it can't be that comfy for him, especially on our sidewalks. They suck around our house and they are so uneven. I did some research and found Wonderfold and it looked like a great option for us. I sent the link to our case manager and she made it happen for us! I was SO excited when the box arrived and I put it together that night.

This is the wagon below- and the last one is his current wheelchair.

Love the commentary :) I was very excited :)

We added Greyson's Special Tomato Chair to the bench seat to add some more support and it worked perfect. Dada was being silly too :) so had to take some pictures.

These are from the last few weeks too. The first 4 pictures are from when Stacey was here. We bought Greyson over to my parents house and Nalle, my nieces dog, was so curious about Greyson. She kept putting her little face right between his feet. We used plaster to make hand molds too- one of Grey and I and one with Dada and Grey.

The darker photo is when I forgot to close his feeding tube end and his breakfast ended up all over his blanket instead of in his tummy! That was the second time that week it happened. The first time Adam didn't secure the tube enough into Grey's button and it ended up all over him and his bed. That was the ONLY time we have ever done that- so not bad- but happened twice in one week! We got his gtube July 1, 2021, so almost a year. Not a bad average overall so I can't complain.

Right now my biggest thing is just how scary life can be. How tough this has been for us and our families, but especially on Greyson. His poor little body trying to cough out this gunk but he just can't. You can hear the frustration sometimes as he tries to stop coughing or to cough hard enough to get it out. This poor kid has had enough. We've had people tell us they can't believe how strong we are, or can't imagine doing everything we are doing. The thing is though- we have to. We don't have any choices in this. Greyson is our son and deserves everything this life has to offer. We have to keep going, keep fighting, keep advocating, and keep doing everything we can do give him the absolute best life we can. He is our baby and I would do anything to take this disease away from me. I know I posted about it before but if I could trade places with him, I would in a heartbeat. He's the best thing I have ever done in my life and I will make sure that his legacy outlives us all. I will make sure he changes the world- how? Not sure yet, but I won't give up until we figure it out.

Yesterday was Mother's day and it was my third Mother's day with Greyson. Adam let me sleep in and I ended up waking up around 9:30. After that I had a little bit of time to sit and enjoy a hot cup of coffee and cleaned up the living room a little. Grey woke up and needed a bath, so I got to splash with him in his tubby. After he was done I took a shower and we headed over to my parents house. My dad is finally back from Florida so I got to see him for the first time since Christmas. We had dinner with my parents and my sister and Ella. Before we jumped into dessert we took Greyson's new wagon out for a stroll in my parents neighborhood and the path that runs along side their house. It was a perfect night! We even wore our Take A Hike Tay-Sachs virtual 5k shirts!

Every time I try and catch his sweet giggles on video - he stops!

Kind of hard to hear in this one below- but Greyson was mimicking us again :)

This was last week- you can hear the rattle in his throat. That's part of the gunk we are suctioning up.

This is a different light projector from two of our friends- Lance and Lauren Fulsher! It's so pretty and it has different sleeves so you can change the stars

AND we had a very odd visitor in our front yard last week! You can hear the suction machine in the background :)

The turkey came in our side yard, across our front yard, then crossed the street and hung out at our neighbors for a bit. That was the first time I have seen a turkey in our yard. We live near a pretty busy street!

Grey seems to be doing a smidge better today than he has been, so I'll take it. I'm hoping we are on the right track.

Well, I'm going to go flip the laundry and then snuggle my baby before he goes to bed. I hope everyone had a wonderful Mother's day. Here is to warmer weather coming (at least for us in Wisconsin, FINALLY!) and taking a lot more family walks in our new wagon!

xoxo,

Kim