Go Pack Go!

We have lived in Green Bay now for almost 4 years. We moved here in 2019, got pregnant early that year, had Greyson in November and stayed pretty close to home after. He was such a tiny preemie that we were afraid of getting him sick in the winter months. He was 4lbs7oz when he was born and ZERO fat on his little body. He had little chicken legs :) Not his thunder thighs he has now! Then of course, 2020 happened and the world shut down with COVID. Grey was still undiagnosed at this point but we still needed to keep him safe as best we could. He was in daycare for like 2 weeks before they shut down and then we sheltered at home for a good chunk of 2020. Then in November 2020 we were searching for a diagnosis for Grey and March 2021 we got it.

So basically, since we've been in Green Bay, we've been sheltered at home. Trying to keep our family healthy. Adam and I are still trying to be as safe as possible but we have also come to realize that we need to give Greyson a life outside of our living room walls. We need to protect him from the germs we can but he needs to have experiences.. and we need the memories. The Green Bay Packers have started their training camp and we decided to bring Grey there and see if we could catch some of the players as they ride the bikes to and from Lambeau. We got there towards the end of practice and got a place right along the gate. I made a sign to hold up to see if we could catch AJ Dillion. Dillon's nickname is Quadzilla and we needed to get Greyson a new jersey this year. He had a Davante Adam's jersey last year but it's too small now and Adam's is no longer on the Packers. Grandpa Steve was visiting us and joked that we should probably get Greyson a quadzilla jersey because of Greyson's quads :) Adam and I went to the proshop after one of his doctor appointments and ended up ordering one off line! When we got in line it took a while for the players to start filtering out to head back to Lambeau. Not all of them walk this way back but we were able to meet some of the newer players and then AJ came out. I put the sign out hoping he would see us. Greyson was in his wagon to keep him out of the sun but I was hoping the sign would be enough for Dillion to notice us. He saw it, pointed at us, and came right over. The sign said "Hey AJ! I'm working on QUADS like yours! Come meet a superhero!" He came right over and even signed the board we brought for Greyson's bedroom. He was so kind and I was able to give him one of Greyson's tiny superhero trading cards.

Here is AJ Dillion signing the board for Grey's room :)

It was such an amazing experience. I don't think these guys realize how much it meant to Adam and I that they took the time out of their day - after a HOT practice - to come sign a piece of wood for our son's room. Adam and I both got teary eyed while AJ was signing it. They have more practices this week so we are hoping to head back down to see if we can meet more players and make more memories with our little quadzilla :)

This past week has been pretty quiet for us. Greyson is slowly recovering from his pneumonia. He's done with the antibiotics but we are still doing his shake vest treatment 3x a day right now. In between feeds and naps. I think this might be a new normal for us. We want to try and keep his lungs as clear as we can and these treatments really help him. He still gets gunky but you can tell after we are done how much clearer he sounds. When he gets gunky you can hear the rattle when he breaths and the raspy noises. After we shake you can't hear them anymore. His hospice nurses came and they did say his lungs sound better than they did before so that's wonderful news. We are trying to balance having fun with these shake vests but thankfully Grey seems to enjoy it. He usually gets pretty chatty while we do them! I'll have to try and catch them on video and I'll post it! He also got his hand splints in yesterday- to help keep his hands from contorting. They just gently stretch his fingers out to help keep them from getting too tight. He has AFOs (ankle foot orthosis) and they are just little braces that go on his feet to help keep his feet from becoming more pointed and tight. We aren't looking to correct them but just to help keep them from getting worse. He tolerates them both really well.

Thankfully we don't have TOO much news - which is always nice around here.

I took these yesterday- He has the sweetest features :) He has long fingers and always grabs your hand when you go to hold his.

Well and he has the CUTEST feet and toes.. and then his curls are coming in!

and of course.. the BEST eyelashes.

I've been feeling ok lately. I mean don't get me wrong. There are moments where I break down and sometimes something will trigger it and I can just feel the grief wave swell up inside and I need to step away to catch myself. It's hard but man, this kid is just amazing. Even when I'm just drained and exhausted from doing everything we need to do- it's like.. he looks at you and I would do literally anything I need to do for him. Anything. He is so sweet and he has always been sweet.

This kid is just amazing. I know I'm a little biased but I am so lucky to be his Mama.

xoxo,

Kim