Gobble til' you Wobble

It's been a busy few weeks in the Rudness house!

The last post was already almost 2 weeks ago. It's been hard to sit down long enough to post a blog! A lot has been going on though- some really good things and some not so great. One good thing is that Adam was at deer camp with his Dad, Uncle, and Great Uncle a few weekends ago. Both his Dad and Adam got deer this year! It's been a long time since they both got a deer so they were excited. I'm not a venison fan, but they were both really excited. Adam hasn't got a deer since 2006 so it's been a long wait for him! Here are the pictures of Adam, his Dad Steve, and their two deer!

Once Adam got back from deer camp we were invited to our friends house- Craig and Lauren to have dinner with them and their little man Desi. Lauren is one of the sweetest girls I've ever met. She is incredibly selfless and despite what she has going on, always checks in on us. Craig and Adam have been friends forever and he adopted me once Adam and I started dating too. They are the type of friends that if we ever need anything - no matter what it was or what they had going on - they would drop it and come help us. They had their own fertility struggles and were finally able to bring their beautiful son into the world earlier this year. He is so stinkin cute AND such a little flirt. I was sitting on the floor with Greyson and Desi was just smiling up a storm. He makes the sweetest baby noises and it was SO great to see them and spend time with Desi. We got some super cute pictures of everyone too :)

The main men - sporting their Packer gear :)

Adam, Craig, Grey, and Desi

Mama, Lauren, Grey, and Desi - and Auntie Courtney snuggling Grey. The last picture is showing how long his hair is getting. He's had two haircuts and it's growing so fast. He has curls just like his Mama (Dad has some too!) and it honestly does whatever it wants. There is no controlling that hair :)

Then the Rudness family took turns snuggling Desi before his bath :) He was SO light compared to Grey. Grey was snoozing in the back in his peapod <3

The past week I worked Monday and Tuesday. I had off the rest of the week for Thanksgiving. Auntie Courtney came up Sunday to spend the week with us and we made sure she had lots of snuggles. Thanksgiving was great- we had all of the favorites! Turkey, mashed potatoes, stuffing, rice and cheese, green bean casserole, corn soufflé, buns, and I made a pumpkin pie. We watched the parade in the morning while Grey slept in and spent the evening decorating for Christmas. We even had some sibling fights caught on camera ;) and our bathroom window busted (not because of a sibling fight, it just broke haha)

Oh siblings :)

We also found this light projector we got for Grey through a nonprofit called LightZ of Hope. It projects different colored lights and is also a bluetooth speaker. It is a really cool projector that just brightens the room. (their website if you want more info: https://www.lightzofhope.org/) When we were painting his room it got put away and I forgot all about it. I was trying to clean out his closet of his clothes that are too small and found it. I plugged it in and the lights lit up his room and he was so in awe. It was amazing to see. He was SO focused on the lights. I haven't seen his eyes focused on something like that in a very long time. I just busted out in tears - but tears of happiness. It was so nice to see him light up along with his bedroom.

I've been putting it on for him every night before bed now. It's so sweet to see the lights dancing on his walls.

The newest addition to his room is there on the foot of his bed. We started using a pulse ox at night when he sleeps to keep an eye on his heart rate and oxygen level. The other night was terrifying. I posted a little thing on my facebook and instagram about it but it was terrifying. This was the post I made at 1:07am on Saturday.

I can't simply just put my son down to sleep. Tay-sachs robs him of the ability to swallow his own saliva and regulate it. He gets medication (2 seziure meds+1 vitamin) at 8am. Then another round at 4pm (1 seziure+ 1 vitamin), then another at 8pm (1seziure), and his final dose of the day is at midnight (1 seziure + 1 vitamin)

He has been "gunky" the past few nights and shortly after the midnight med cycle he starts choking on his own saliva because he is struggling to be able to control it anymore.

His body and brain are failing him.

Tonight was the worst it's been. I gave him his meds, tucked him in, and headed to my own bed. As soon as I started to climb in he began gasping for air. I quickly ran in with Adam right behind me. He wasn't breathing and he was trying to cough it out. We quickly suctioned his mouth and nose to try and clear anything.

Here's the kicker.. we don't have the long suction catheters because our provider doesn't have them. Another company may, but we need to check to make sure they accept our insurance. Then we'd have to return our current equipment to our current provider and start the process of getting all equipment through the new provider. Health coverage in this country is a MF joke. That's for another day.

My point is, tay-sachs is a fucking monster and my heart is so broken. I've never felt this shattered and I will never be the same person I was before March 26, 2021. If you are starting a family, PLEASE get genetic testing done. Every single one of you is a carrier for something. Please please please get the blood work done and save your selves this and your child from this. Rare happens and we are proof of that.

The hardest part.. is I can't fix this. I can't make it better for him."

It was awful. Hearing him gasp for air- knowing he was trying to get it in his lungs but he couldn't, was awful. Knowing I can't fix this is awful. It's debilitating. I sat in his room hugging him after he was finally able to breath and just sobbed. It's so hard because as his Mom, I should be able to protect him from things and keep him safe. But I can't from tay-sachs. I can't do anything other than be his advocate, his comfort, his Mama. It's so hard to "let it go" and just know that we are doing everything we can for him because there is this constant "there has to be more" feeling. There has to be more I can be doing because he is my son and I need to protect him.

Grey has been sleeping more and more during the day. Lots of naps and snuggles. We've been doing his stretches on the floor and reading books. We have the tree on as soon as it's dusk out and try to let him enjoy that with us.

The last post I was talking about how I was making Christmas crafts while Adam was at deer camp and never posted what I made :) I made a few other things but these were my big two. I put a layer of glitter underneath the glass and the design on the front. The glitter reminded me of snow so I used it for both.

It's been a busy few weeks but I'm glad I finally had a chance to update this. I'm going to try and keep up better going forward.

I have had a few people reach out to me for things we need for Greyson. We are doing pretty well with medical supplies right now. I'm keeping the Amazon wishlist as we need things or things I think Grey may like. The link is under the "Ways To Help" tab or here:

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

We also still have the gofundme set up to help Adam and I with everything (under the same tab) or here:

https://gofund.me/f6801998

I also have my venmo set up directly to Greyson's account if you prefer venmo. My username is @kimrudness . We also created a cashapp for Grey $KimRudness if you prefer that method as well.

We also are hoping if you have any spare Christmas cards this season to send them our way! We are hoping to fill Grey's stocking with cards this year.

I hope you had a wonderful Thanksgiving and I promise I'll get better at posting updates more frequently!

xoxo,

Kim