Some place special

Adam and I both grew up in Marquette, Michigan. When you talk about the UP to someone who hasn't been to the UP.. it's hard to describe. It's truly one of a kind. Marquette is the largest city in the Upper Peninsula but it's still has a small town feel. There is something about Marquette that will always just be "home" for the both of us. It just resets your soul. It's changed a lot over the years but there are our local favorite places and there is always Lake Superior to sit and enjoy. When we lived here, I definitely took it for granted. Moving away was something I think I had to do, but it's always so great to come back.

We came back to Marquette for our TV6 interview. We decided to make a mini-vacation out of it and just enjoy our hometown with Greyson. Be tourists and just do things we never did when we lived here. We walked downtown yesterday and went into the local shops on Washington. Went to Donkers and picked up some chocolate (of course), went up third street, walked by Harlow Park, and today we ventured to NMU's campus to see all the changes they made there. They updated the University Center since I graduated there and it's absolutely gorgeous. I dragged Adam and Greyson into their bookstore and ended up buying a t-shirt and hoodie. When I was attending college there, I would NEVER wear NMU gear. It didn't feel as cool because I was from here. The things that seemed so important back then :) We picked up Togo's for lunch and headed back to my parents rental house we are staying at. Another thing we miss- the food places! Ugh, there are amazing places everywhere you go, but I can always go for some local MQT cuisine. We've had our favorites so far- Lake Superior Pizza (the salad bowls are my faaaav), Vangos, Border Grill, Main St, and now Togo's for lunch. It's been a great trip so far. I wish we could stay longer!

The TV6 interview went well. It went a lot faster than I had thought it would. I keep running over the questions and answers in my mind, I hope we hit on everything we wanted to share and I hope that our story reaches people. We want to share the importance of genetic testing BEFORE you get pregnant. It wasn't a conversation before we had Grey or while we were trying to get pregnant. We are proof that rare happens.. we are two Yoopers and our son was diagnosed with tay-sachs. I never, in a million years, would have thought something like this would happen to us. Alyssa was our reporter who did our interview and she made us feel very comfortable. It was just like having a conversation. Sharing our story directly with her, just with a camera there too. She is also doing an interview with our neurologist back in Green Bay and the conference and family services coordinator at NTSAD. We really wanted NTSAD to be included because of how much they have helped us through this journey. We honestly don't know where we would be without them. The organization AND the families who are involved. We don't have an air date yet, but I promise to keep the blog updated and I will share it as soon as we know more. It will probably be in two weeks or so.

The other really cool thing we are doing soon is my old coworker and friend, Erin, just started her own podcast. It's calling Dealing With. Her last name is Deal- so it's a cute play on words too! She talks about mental health and just the things she's had to deal with in her life. She reached out to me a month or so ago and asked if I would be willing to come on there and share our story. Share Greyson's story. Ab-so-lutely! Now that we are more comfortable with sharing our story, the more I'd like to. It took me awhile to start this blog. I started it so many times, only to delete it. I'd close my computer, walk away, and then be like no, let's just start one. Until finally it was like, you know what.. just do it! If people want to read about it, they can. If they don't want to, they don't have to. If we can even help one person, one family, to know they aren't alone.. then mission accomplished. We want to educate about tay-sachs, genetic testing, share Greyson and also just have a place for me to work through my own feelings and fears. That's Erin's podcast. She is a very talented, strong, loving, and brave Mama of two girls. Her and her husband live in Grand Rapids Michigan now but that's her way of sharing her story. Her podcast is out now on Apple Podcast, Spotify, and Amazon music.

I haven't been taking enough pictures since we've been back in Marquette, but here are some that I did take! I also forgot to update- we FINALLY got Greyson's ppod chair! It's a piece of adaptive equipment that is supportive but allows him to sit and be up at a higher level. We are so glad we were able to get it because he loves it. The first day we had it delivered, we put him in it and he was so chatty and then just fell asleep. Then there are a few photos (and a video below) of Adam playing at the park right across from my parents rental house. Adam also got a tattoo in Marquette of Greyson's heartbeat on his forearm. A bitter sweet tattoo, but one for our brave little man. Then a photo of Alyssa and I after our tv6 interview.

Now.. some videos. Greyson talking in his ppod..

This is Adam being a big kid playing on the slide :)

And Greyson being goofy :)

Greyson has had EEGs previously to track his seizures and make sure the medication he is taking is actually working. He's currently on depakote (3.5mls, 3x/day) and levocarnitine (2mls, 3x/day). His seizure activity has been previously at night while he's sleeping. They are absent seizures, meaning we can't tell he is having them. The longest one they recorded was 12 seconds long. He never had them during the day. Well the past week or so, we noticed that he's having these "episodes" where he breaths every quickly and shallow, his arms shoot up and are so stiff, his eyes are focused but focused on nothing. You can't get his attention at all and he gets so tired after. I sent a video to our neurologist and he said he's pretty positive they are seizures. He's going to try and put Grey on an additional medication called onfi. I looked up the side effects and they aren't great. It's SO incredibly hard to put your trust into someone else when it comes to your kid. We're starting to do some research on different seizure meds and different holistic options too. We know that we want to do what is best for him and keep him comfortable, but i'm worried these medications will just make him sleep more. He already sleeps for a good chunk of the day. I just don't want him to be a zombie with what time we have left.

Speaking of sleeping.. Greyson is waking up from a nap so I better leave it here for now. I will make sure to post updates on the TV interview and podcast in case you are interested in watching and listening in.

** oh quickly- I also wanted to mention, we still have our gofundme up and running, and Greysons amazon wishlist. I had a few people ask me where to find the links and they are under the main menu and "ways to help".

the gofundme: https://www.gofundme.com/f/support-for-kim-adam-and-greyson?utm_campaign=p_cp+share-sheet&utm_medium=copy_link_all&utm_source=customer

Amazon for Grey: https://www.amazon.com/hz/wishlist/ls/35Z2PMSJNVX2S?ref_=wl_share

and if you prefer venmo, the one that is connected to Greyson's account is @kimrudness

At this time, Adam and I do not have a wishlist for us, only for Grey. I had a friend ask me to create one but we're doing ok. Right now we are focused on Grey but appreciate the thought so much.

ok, he's back alseep.. just a few more from when Grey was younger for you :)

Our little fishy!

Saying "Mama"

He used to make this cute little noise when he'd eat and wanted more :)

xoxo,

Kim