Happiness can always be found...

It's been awhile since I've had a chance to post a new blog! This week has been much better for me than the last time I posted.

The grief wave still comes and goes but it seems to be more calm the past week. The trough seems to be more mellow and not so deep. We've been having a good week. We've had some changes with Greyson but nothing that we can't handle. The first change is we have added oxygen to his nightly routine. He has pulse ox that measures his O2 and heart rate while he sleeps and it would sometimes dip at night but he would almost always recover before we even got out of bed. Then for a few nights he wasn't recovering as quickly. We decided to try the oxygen and he stayed in the correct range the entire night. We figure it's a comfort for him, it's not going to hurt him so we are doing it at night even when his numbers start out great. Just so he can sleep without struggling to get O2 in and Adam and I can sleep without hearing his alarm going off in the middle of the night. He's been doing great with it too. The other change is we started his epidiolex! Insurance approved Grey for it and we started it this past Monday. He's getting a very small amount in his g-tube with food and we are able to lower one of his other seizure medications (onfi) and it seems to be helping. He hasn't had a noticeable seizure really at all this week and he's been a little more alert than normal. Even if it's just a coincidence, I'll take it! :)

This week we had physical therapy on Tuesday. Adam and I both took Grey but I got in the pool with him while Dada stayed out. He did great! Adam had class Tuesday night so Auntie Denise came over for some much needed snuggles :)

The first photo was Grey SO alert with his lights before bed this week. Blow the photos is the video of him laughing at them! The middle photo was on the way to PT- Grey was so sleepy but stayed awake the whole time. Then the last photo is Denise with Grey after swimming- taking a snuggle nap.

He loves those lights! He's been giggling a lot lately. We thought they were a seizure but the EEG we had done showed NO seizure activity while he was laughing. I have no idea what made the giggles come back - because it's been MONTHS since we have heard them - but I love it. It makes my heart so happy to hear them again.

I've talked about TinySuperheros before- but I bought Grey some more patches and we decided to make him some trading cards. It's a cute program they do for the super kids and ship out random kiddos with their packages so you can learn about another superhero! We decided to make Grey ones and allowed them to include him in the ones that can be sent out to other families. It turned out SO cute. I can't wait to get them in the mail soon. They should be here tomorrow! If you would like one, please use the "contact us" card and include your address!

This week was also feeding tube awareness week! I shared some of Greyson's story on my facebook and instagram this week but I thought I would share some photos and videos here too.

Below are photos from early March 2020. Greyson was admitted to the Children's hospital in Madison, WI for "failure to thrive". Basically he was losing weight and we couldn't get him to eat enough calories/nutrients. At this point he was eating purees but taking an HOUR to eat small pouch or tub of gerber food. All 3 of us were frustrated. Adam and I knew he needed to eat but he just wasn't interested. He was losing weight and our pediatrician was concerned. She got us admitted to Madison and we drove down the same day and got settled. The next few days there were just a revolving door of specialists, nurses, doctors, and teams of people. It was so overwhelming. They needed to place the NG tube (you can see the tube in these two pictures below). It's just a narrow tube that goes in through the nose and down the throat into the stomach. Greyson has had the NG tube twice in his short life. The first was when he was in the NICU. I was cleaning my pump parts when a new nurse came in and put the tube down his nose. I wasn't prepared for the noise he made.. and it still haunts me. I had to step out of the room in Madison when they placed this one because I knew I just couldn't hear that noise again. It was so heartbreaking.

After we got our diagnosis we knew that a feeding tube was just a matter of when.. not if. At some point Tay-Sachs would rob our son of the ability to eat by mouth safely. Some families chose to do the NG tube, some chose to do the g-tube, some do the g-j-tube. Depending on the different situations and what is right for them and their child. We went with the g-tube for Greyson.

The first photo below is RIGHT after surgery. Ugh, I was so afraid we made the wrong decision. His poor tummy looked so painful. Once the sites started to heal- it started to look less scary.

Now- it looks so much better! It never gets in the way, I'm not worried about him accidently pulling it out like the NG tube, and it allows us to feed Greyson safely. We can feed him while he sleeps, we can give him medications and we know he is getting everything he needs, he can't spit it out or anything. We made the right decision that day and I would do it again knowing what I know now. It was the safest option for him and it allows us to give him the nutrients he needs to be strong!

I love this video :) My sweet cheeks chatting with me while we stretched and watched Bluey! This was right after Madison when they placed the NG tube.

This video is from April 1, 2020. Greyson's first solid food. He did so great until late 2020 and early 2021 with his purees.

While this week was better- that doesn't mean I didn't have some rough times too. I went to a new doctor this week and I had to explain my situation to a stranger again. I had to explain to his nurse why some of my answers may seem like I'm depressed and why I'm taking an antidepressant/antianxiety. I had to explain to her and the doctor what Tay-Sachs is and what it means for my future, my husband's future, and most importantly my son's future. I made it through the appointment but felt the tears welling up as soon as I got outside the hospital. I barely made it to my car before I broke down.

Even good weeks have rough days. Some days I can talk about Grey's diagnosis and I'm ok. I can get it out without losing it. Some days I have to run to my car with mascara running down my face and I hide until I can control it. This week overall was a good week. Greyson giggles definitely helped! Adam is crushing nursing school right now. The Superbowl is Sunday (Go Rams! - I'm cheering for Matthew Stafford.. he deserves a win!) and I cannot WAIT for the half time show!! Finally a performance of artists I actually listen to.

We have had some people reach out on what we need for Greyson right now. We have been keeping the Amazon wish-list updated with things as we need. We also still have our gofundme up and I have the venmo account for Greyson. Everything is under the "ways to help" tab on the blog.

The gofundme link: https://gofund.me/f6801998

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

Venmo: @kimrudness

Cashapp: $kimrudness

Another way to help us is to please share our story! Share the blog and if you have any questions, please do not hesitate to reach out to us. We are hoping Greyson's story will help educate about genetic disorders, Tay-Sachs, and genetic testing.

"Happiness can be found even in the darkest of times, if one only remembers to turn on the light"

xoxo,

Kim