The sweet little things

It's been awhile since my last post!

We've been pretty busy since the last post. We started upgrading Greyson's nursery from Woodland nursery to big boy dino room! My dad and I had got the paint and got started at the end of August. My birthday is August 31st and it was a pretty great birthday. Adam let me sleep in a bit and got me breakfast. I had to go to the dentist but then I went to the salon and got my hair done. It was really nice to be pampered for a little. She dyed my hair and gave me a little trim. My hairstylist is so sweet and she is very willing to listen and ask questions about Grey and what is going on. The last time I saw her was right after the diagnosis and I lost it in her chair.. so she was so kind and sent me a card with a beautiful necklace. She shared her boyfriends Mother is living with cancer right now too and we connected over the struggles of terrible diagnoses. After my hair was done my parents picked up dinner from a local restaurant and ate at our house. I was able to snuggle Grey and just spend time with my family. It was really nice.

After that we got to work on Grey's room. I took everything out of his room and started cleaning the walls. My Mom and Dad came over to help and Dad helped me paint, and Nana took Grey so Adam could come help too. We painted 3 walls a bluey-gray color and the wall behind his bed is a bright, deep blue. I cut out dinosaur footprints out of vinyl and placed them on the bright blue wall. My Dad is a carpenter and built us an amazing lofted bed and changing table that is on wheels. The bed is higher up so it helps Adam and I to get Grey in and out without hurting our backs. The changing table is up higher too and on wheels so we can wheel it in our bathroom for bath nights and have a place to get him ready to keep him warm in the bathroom. I put up the decorations the other day and it turned out so cute. I just need to get some storage cubes and it will be done. I'll have to post again with updated photos. Here are photos I had of the progress. I'll get ones of the final room later this week when I'm off! The first photos are his old nursery.

We also had Grandma, Grandpa, and Auntie Courtney come visit us for a weekend! Grandma Jill and Grandpa went to the Farmers Market in downtown Green Bay and brought us these beautiful flowers!

Greyson is doing ok. He's been really sleepy lately. He goes to bed between 8-9 lately and we have to wake him up in the morning. Today I went in his room at 10:30 and opened his blinds and he was still out. I let him sleep until 1130 and then I went and changed him and got him ready for the day. Some days he will stay awake during the day but others he naps a few times. I don't know if it's the seizure meds or if it's just tay-sachs or what. It's hard to see him so tired all the time though. He has had a few peeks of the "old" Greyson come through the past few days. We were reading one of his old favorite books that is a touchy book that plays animal noises and he was excited when we touched the pig and it made the oink noise. When he was younger, he loved the book and loved feeling the different textures and loved music. He would make this cute excitement noise. He hasn't done it in a really long time, but today, he did. I'm not sure what even made him excited but he was so good to hear it again. When he was younger he used to give us the biggest smile when we would go in his room to get him in the morning. We would sing-song "goooood moooorning!" and he'd light right up. That stopped a few months ago.. but today he did it again. I started crying and kept kissing his cheeks. I miss the sweet little things he used to do all the time. The sweet little things we took for granted. The things tay-sachs has taken away from him.

I've been pretty good about keeping my shit together lately, but this weekend has been hard. Last week Adam met with Grey's speech therapist and she mentioned it might be time to start doing some tube feedings. We knew this was coming. We knew this was going to come and that's why we got the g-tube when we did.. because it's a when, not an if. But Grey has been struggling with his bottles for the past few days. He opens his mouth like he wants it but keeps his teeth clenched. When we finally get the bottle in his mouth, he will bite the nipple or barely suck. It takes him longer to finish a bottle and it's frustrating when you want him to eat but he won't open his teeth. He did it to me yesterday and it hit me. This is the last thing tay-sachs can really take away from my son... besides his life. It already took away his ability to sit up on his own, his ability to roll over, to see, to eat solid foods, to play, to dance, to hold up his own head.. and now it's taking his ability to have a bottle. It took away his milestones he achieved. It took away his smiles and giggles. Now it's taking this. I cried pretty hard last night during bedtime. Tay-sachs has taken so much away from Grey and from us.. and now it's taking his ability to have a bottle. It felt like this was down the road, it will come later.. but now it's here. Another thing that is just smacking us in the face. I don't think I'll ever be ready, but I'm not ready for him to lose the ability to eat by mouth.. and I'm certainly not ready for tay-sachs to take him away from us. I tried to give him a bottle this afternoon and he did the teeth clenching thing again. Instead of trying to get the bottle in, I just gave in and did a tube feed. He did great with the tube feeding, it was harder on me for sure, but it just broke my heart.

I love these videos of him.. but it's so hard to see how far he's regressed. He used to love to eat in his highchair. He would make that noise if we were too slow at shoveling it in.. which we were most of the time. He used to do this little dance when he'd see his water cup. He used to giggle when we tickled him. I finally got some videos to upload on this site so I'll keep posting them this week. It's 11pm and I have to work tomorrow, so I'll have to save that for another day.

xoxo,

Kim