Oh the places you'll go.

Sometimes finding the topics I feel like I should talk about or the right words to express how I'm truly feeling is a struggle. Sometimes it's so easy it just spews out and I need to get something off my chest.

I was struggling with what to write about. It's been awhile since my last post and I wanted to post an update but I didn't really have a whole lot on the Greyson front. Which, as I sit here to type this out, I realized is a really good thing. Nothing is sometimes the best topic. The best news. Nothing has really been going on with Grey.. he's been stable the past few weeks. I love writing that. He's been *good*. We've been suctioning less, only a small amount and usually right before bed, but not very long. He's been sounding clear, he's handling his food well, he's been sleeping soundly, he's been good. I'm holding on to that right now because, well, shit, it seriously makes my heart so happy. That bubbly feeling that warms your soul. I know it won't last forever but right now, hell yeah I'll take it! The past two days he's been a little more stuffy but nothing like it was previously.

Grey has a sleep study coming up next month in Madison but other than that, we've had a more quiet few weeks as far as appointments go. Our hospice RN and LPN came over this week and everything went great. Greyson's weight gain is slowing (which is a good thing, he's almost 2.5 and in 3T shirts and mostly ,4t-5t pants. We usually put lose clothing on him but this poor kid is growing so fast. I bought him summer clothes at the end of last season and they are more than likely too small for him now! Oh well, I'm happy and we can pass the clothes on if needed.

Adam has been killing it in his nursing program. He's currently taking nursing fundamentals and learning how to take assessments, blood pressure, suctioning, feeding tubes, etc. A lot of which he does every day for Grey. He's been doing really well. We had a nice visit with family lately too since Greyson's baptism.

This is Grey's Uncle Pete (my sister's husband) who finally got his snuggles!

We also spent Easter at my parents house with my sister and my youngest niece. We had a delicious brunch, followed up by coloring eggs and decorating pajukissa! Pajunkissa is a Finnish tradition of decorating pussywillow branches. It was a really nice Easter. We haven't colored eggs with Grey yet because his first Easter he was still little. His second Easter was shortly after we received the diagnosis and we were still processing to be honest.

Here's a little video I took on snapchat :) Adam was practicing for his nursing fundamentals check off- taking all of our blood pressures.

This was Tuesday night - Adam was in class and I was snuggling with Grey when he got the hiccups. Poor kiddo- they were so aggressive!

This was the first video I ever caught of his hiccups. He used to have hiccups when he was still in my tummy. It was such a cool feeling.

My tiny babe. This was shortly after he came home from the NICU. That was one of his cuddly swaddles we used to help keep him warm in our apartment.

This video was taken last year around this time. Grey had more muscle tone back then- he could still hold his head up, he was wobbly but had some tone. He used to LOVE "walking" up the stairs like this. I think the feeling of his feet on the carpet and almost like "independence" was something he really enjoyed. I thought he was heavy then! This used to hurt my back if we did the whole set of steps from the living room to his bedroom.

This photo was 2 years ago..

His Auntie Courtney and Grey chilling at our house!

And then this was sent to me last week from one of my old childhood friends. This was my birth announcement photo my parents had placed in the local newspaper. I can't get over how much Greyson looks like me. My sweet little mini me!

Other than that we've been busy with work and Adam with classes.

Oh also, this happened...

I'm heading back to college to get my BSN... 8 years after I earned my first bachelor's degree.. and only 16 years since I graduated high school. (Ok, barf. There's no way.) I'm doing the same program that Adam is. I really want to make this happen. I absolutely love the company I work for currently, but I need to do more. I need to help other families and children. I need to educate about rare diseases, especially Tay-Sachs. I need to make sure Greyson's legacy outlives us all. I also want to help families and children who get news like we did. Now that I have walked some of this journey I want to be able to share our knowledge that we have. Share the amazing programs we have found to help us, what equipment we've loved or didn't love, and just that they are not alone. It's going to be super hard to balance everything - I'm staying at work, but I know we can do this. Adam and I are both determined to make this happen. I just completed my online orientation yesterday and working with Adam to sign up for classes that work around his schedule. I need to file for the FAFSA and some scholarships to see if I can get some financial help with college, we don't really have our savings like we would have before. I know you need to be at least part-time in school to get financial help so it will be a lot of work and late nights.. but that is what coffee is for right? :)

I'm also still working on the blog to share about some of the programs we have found and loved. I'm including some of the equipment we have found most valuable too. I'm hoping I can post that one later this week!

We still have the "contact us" page up so please reach out if you have any questions or anything you'd like me to cover in a future blog. Nothing is off limits! You can even just send Grey a "hi" if you want! We also still have the gofundme page up and running, venmo, paypal and Grey's amazon wishlist. If you are unable to donate or already have, thank you. Another way to help us, is share our story. Please share our blog with your friends, family, coworkers, anyone. We really want to make sure Greyson's story is out there for anyone who may need it and to help people understand more about rare and genetic testing.

xoxo,

Kim