Hot Mess Express

Adam and I are currently sitting in the pre-op room while Greyson is in surgery.

Yesterday was Adam and my 3 year wedding anniversary. We celebrated a little differently yesterday. We frantically packed all 3 of us up and headed to Madison. Greyson's surgery was scheduled for early this morning (July 1st) and we didn't want to try and travel with a tired kiddo and have him deal with surgery the same day. I was a pretty emotional mess yesterday. I'm just scared. I know Grey will be ok in the OR with his medical team but it's still surgery. His tummy will always have this gtube in it from now on. He will never have a bare stomach again. That breaks my heart. He's also having a fundoplication and probing of his nasolacrimal duct. The nasolacrimal duct probing is because he was born with a blocked tear duct and they're just going to try and remove the blockage. We figured since he was already going under, it would be best to do everything all at once so he wouldn't have to go under again. The fundoplication is taking the top part of the stomach and wrapping it around the bottom end of his esophagus. That helps tighten the muscles to reduce things coming back up as his muscles get weaker. The staff at American Family Children's hospital have been wonderful but it's still just terrifying. It's our baby and he's had to endure more than he should ever have to in such a short life. It's overwhelming.

Anyway- last night we checked into our hotel and took Grey swimming. I used to be a competitive swimmer and if there is water... I will be in it. I love being in water. But yesterday.. I forgot my swim suit at home! I was so sad! But thankfully I packed Greyson's and Adam had his so he took little man swimming in the pool while I sat on the edge taking pictures. Then we came back to our room, gave Grey a bath, a bottle, and put him to bed. We have a traveling toddler bed for him but we figured we would try just putting him in his own bed with pillows in case he moved at all. Grey doesn't have the muscle strength to really move at all so I wasn't too worried. We placed pillows along his sides and let him have a big ol' queen sized bed to himself. Lucky kiddo :) He slept so well too. After he was asleep, Adam and I ordered Cheesecake Factory and watched Ink Master on my ipad, sharing headphones. It was a fun evening with my hubby despite the reason we are in Madison.

This morning we headed over to the hospital and got Grey set up for his pre-op. We met with all the surgeons, nurses, and th anesthesiologist. Thank goodness they are used to parents with little ones because they get it. They get why I'm crying and kissing him, they get why I'm scared to hand him over to them, they get why Adam hugged him and was crying. I don't have to explain it to them and that's a really nice feeling. They took our little man back around 10:00am and we are waiting. Adam and I downloaded the newest Loki episode on Disney plus and now he's playing my Nintendo 3ds and I thought it would be good to update the blog while I can. I'm hoping to keep updating as our stay progresses depending on how well Grey is doing and how I'm doing. I'm emotional and a little drained. It's been a lot of build up to today and It's been hard to just stop and breathe. You try to keep everyone updated or respond to texts/emails/messages but it's also ok to take a minute and respond when you can. So if I don't respond right away- that's why :) It sounds like we will be in Madison between 3-5 days depending on Grey is handling everything. We packed for 5 to be safe.

Here are some pictures of the weekend so far. We brought his Tiny Superhero's cape (https://tinysuperheroes.com/ --> a very super cool program for kiddos. I'll have to do another blog post about that!)

We will do our best to keep the blog updated this weekend. I want to do one with the programs we found that have helped us so much and one with more information about tay-sachs itself.

Thank you everyone for all the well wishes for our little man.

xoxo,

Kim