Decisions decisions.

*caution, some strong language ahead*

Last month was pretty quiet for the Rudness household. Greyson didn't have too many appointments or anything. This month is the opposite!

Adam just took his final exam for his first nursing class (which he scored a 93/100) and he finished his medical terminology class.. so he's officially on spring break! He worked hard this semester to knock everything out and he got As in both classes. Way to go Dada! We are so proud of you!

Greyson has quite a few appointments this month. Thankfully two are virtual, one is in Madison, and the rest are just here in Green Bay. Overall, Grey is doing well. He's been a little more sleepy during the day, but I have a feeling he's adjusting to the new seizure CBD med too. He's been getting his compassionate touch massage twice a week from our hospice LPN and he LOVES them. He is always so relaxed after and just melts into a nap. My sister and I have been taking him to the CP center for swimming and he's also been loving that too. Last week we took him and after I did his physical therapy, I let him just float with his Auntie and his floaties and he PASSED OUT. He was so zonked, I couldn't wake him up! It was so sweet! So I let him just relax and float as we talked and walked in the pool with him.

He meets with a new specialty in Madison later this month. They are a subcategory of our complex team but they look at his joints and limbs to see if he needs any splints, braces, or devices to make sure he is doing ok. Right now, because of his muscle tone, his feet are constantly pointed, his toes are curled and his little hands are usually in a fist. So they may recommend braces to help keep his foot in a more natural position. The constant pointing can stain those muscles and cause aches and pains. They mentioned getting him a split for his hand where it would keep his thumb out, rather than being tucked into his palm making a fist. We are only taking a day trip this time, the hotels are expensive for some reason that weekend we are going down there and it's so hard to travel with everything we need for him. So day trip it is!

My niece and I had an Aunty and Ella day Saturday last weekend after I got off work. We went to Barnes and Noble for some Starbucks and books, ran a few errands, picked up dinner, and brought it back to my parents house and hung out there. My Mom flew back from Florida the next day so we went back over there for dinner Sunday. Grey had a virtual appointment with his complex care team in Madison Monday morning. It's a really wonderful program and I wish it had been available earlier in our diagnosis. They have so many resources for kids like Greyson who need more attention and more specialties. Our team there is so wonderful. You can tell they CARE about Greyson and care about his life. They care about Adam and I. They genuinely want to help make everything as smooth as they can for us and it means the world. They always tell Adam and I how wonderful we are and what a great job we are doing. It's nice to hear that sometimes. We've had to make some pretty difficult decisions and there are more coming, but they almost reassure us and agree with what decisions we have made. We had some difficult conversations with our palliative doctor yesterday and she was so thorough and thoughtful. She didn't sugar coat anything but said everything very eloquently and compassionately. Adam kind of started the discussion of what will happen when Greyson dies.. what do we do? And she talked us through everything. She explained how our hospice team is the only phone call we will need to make if they aren't already there. They will handle everything else. We are working on looking at funeral homes ahead of time and trying to have the expenses paid for before that time comes.

When Adam asked that initial question, I started crying.

I know this is something we need to discuss. I know that. But how do you plan a funeral for your son. How do you decide if you want your baby cremated or buried in the ground. I know we need to talk about this and I want it done before the time actually comes so we don't just make (more of) an emotional choice.. but my god, it's hard. I broke down and the tears started flowing and I couldn't stop them. We talked about what the end of life typically looks like and what happens in the body. We talked about the DNR form - do not resuscitate form. Basically the form would tell anyone (hospice, EMS, hospital personnel) that we do not want CPR done on Greyson if he were to stop breathing. Our hospice team had the from in our intake paperwork but I didn't sign it. Adam and I have discussed briefly that we understand why we would sign it but we just aren't there yet.

CPR is aggressive. It's violent. You're literally pushing so hard on the person's chest to pump their heart for them. It's hard on an adult body, but a child's small body? Our palliative care Doctor along with hospice warned us how hard it would be on Grey. Broken ribs, broken sternum, bruised lungs and heart.. is all of that pain and possible suffering worth it? I'm not so sure. I think if we had to see the CPR done on our child, that would be emotionally scarring on both Adam and I too. Another decision we shouldn't have to fucking make.

Here are some photos from the past week - The first one, the sun was hitting Greyson just perfect as he was taking an afternoon snooze. The next one we were looking at one of his favorite books. The other two are just snuggles with Mama and Dada.

I was looking at our family photos the other day and look at the difference at these two superhero pictures..

The first one was May 2021. The second was February 2022. Our little man has grown so much and has earned so many new patches on his cape! We have more in the mail on the way to our house as I type this :)

This video was taken two nights ago as I rocked Greyson to sleep in his glider. He has been doing this thing where he makes these sweet little like purring noises and then I'll do it- then he does it again. It's so cute hearing him go back and forth with me. I didn't do it last night because that video was taken at midnight but I'll try and catch it the next time we do it for the next blog.

Here are some more pictures of Grey when he was itty bitty :) my sweet boy.

I also am working on a blog to share some of the amazing programs and foundations we have found on our journey. I also asked some of our family if they'd like to create a post for the blog that I can share for them. If there is anything specific you want to know more about or anything I can explain- please feel free to contact us. I haven't had any request but I'd be happy to answer questions if anyone has anything. You can use the "contact us" tab or we have the email- greysons.brave.story@gmail.com you can use too.

I also created a linktree with our important links to our social media pages, the gofundme, and the amazon wishlist to make it easier too! : https://linktr.ee/Greysons.brave.story

xoxo,

Kim