It's a beaut Clark.

This Christmas my two older sisters, my niece and I headed off to LAMBEAU field to watch the Pack take on the Browns. Ella was born in Green Bay but they moved to Finland when she was really young. She was so excited for her first game! I think Denise and I ended up having the most fun out of the group but it was so nice to do something like that with my sisters and niece. We missed my other niece- who is in Finland still- but glad we were able to go! PLUS the Packers won! The rest of the evening I spent with Adam, Courtney, and Grey. It was a nice quiet evening at home with family. We hope everyone else had a wonderful Christmas too!

Sunday my sisters came over for a craft day and Courtney was baking cookies for her trip to Marquette. She made so many cookies for everyone! She had to leave Sunday because we were going to get hit with a snowstorm Monday. Most of the way back to Michigan was supposed to be hit with snow. She made it up there safe and sound. Adam and I decided to take Grey to see Santa's Rockin' Lights Sunday evening- a drive through light show at the fair grounds here in Green Bay. I wish we could have kept going around, they were so beautiful!

Here are some videos of the lights!

We had pool physical therapy yesterday with Ms. Liz and she helped show me what to do with Grey when we take him to the pool on our own. I caught this cute video on our way to PT.. Grey loves car rides!

Grey had a really good PT session. He was pretty tuckered afterwards and we gave him a bath and he had a nice snuggle nap with Dada. When it was time for bed we put his lights on and he was loving them again :)

Today- Tuesday 12/28 we have to bring Greyson in to the doctor for a gtube change. The tube gets changed every 3 months and eventually they want us to do it at home on our own. Adam and I were there the first change and Adam did it, but it is totally different when we have a medical team around us. We got HOW to do it, but it's hard to do it on your own kid. I don't feel comfortable and neither did Adam so we made an appointment to meet with a nurse to get it changed today. Wednesday we are meeting our hospice Chaplin, Thursday our CNA is coming to give Greyson a little massage, and Friday we have our hospice nurse coming for a check in along with Adam's Dad and his finance coming to celebrate New Year with us. I'm glad I had this week off work- it's a busy week!

We've been having pretty good days with Grey lately. He's been happy and been making his excited noises a lot lately. It's been really nice to hear them especially when nothing special is happening, he just wants us to know he's doing ok. We also got our order in for his shake vest finally. Our complex care team got everything together and made it happen for us. Our pulmonologist got the orders in and we picked which brand we wanted and sent it in. Other than that nothing too exciting has been going on.

My goal is to update the other blog pages this week too. I need to upload more photos and videos!

xoxo,

Kim