Sweet and steady as a heartbeat

It's been awhile since I've had a chance to sit down and post an update. We just got back from a quick trip to Madison to meet with the complex care team at American Family Children's hospital. We decided to apply to get Greyson enrolled in their program to help coordinate visits and have a team of doctors who know Grey and know his story. It's a new program within their hospital but we now have a team of doctors, nurses, case manager, and social workers who will know us personally and can help us navigate Greyson's care. I wish this program would have been here when we first got diagnosed, but so thankful we have it now. We met with our team on Monday and everyone was so in love with Greyson. You could tell how much they wanted to be there to help us. The listened to our story and started a plan to help get us palliative/hospice care set up so that we can take that off our list. That has been one of the biggest struggles for us since the beginning. Every company we contacted always says they don't do peds, or he doesn't meet the time requirement. This team will help take that off our plate so we can focus on spending time with Grey and not on the phone constantly.

I wanted to make our trip to Madison more of a fun one. I've only been to Madison to go to the hospital with the exception of one trip, which was for a wedding, but I had to leave early because we had Grey with us and it was bed time :). I figured let's stay the night instead of driving there and back in one day. I booked a hotel with a pool and we decided to go see the Zoo before we hit the road Tuesday morning. The hotel was beautiful and we ordered dinner while Grey took a nap. Once he woke up we got our suits on and hit the pool. It was a little chillier than Greyson prefers (haha) but we had fun. Woke up the next morning and headed to the zoo. The zoo is free admission to everyone and it's so awesome! It is easy to walk around with Greyson's stroller and had some really amazing animals. It was so fun and I'd love to go back again. We kept saying "I can't believe this is free!" the whole time. Here are some fun pictures from our adventure!

These are from our way to Madison. Our car was PACKED. We had to bring Greyson's stroller, feeding pole and pump, his bean bag chair, our luggage, diaper bag, all the chargers and things for our devices and his pump, his boppy for feeding, all his food, bottles, etc. My chevy malibu was packed to the brim. It's crazy how much you need for one night away from home. The last picture is Grey taking his nap in the hotel room :)

Then the zoo! When we walked in, the staff asked if Grey would like a stamp on his hand. We decided the alligator one was the coolest :)

In the rush of packing Monday before our appointment, we forgot to pack Greyson's food thickener. We did bring his feeding pole, pump, and feeding bags but that only helps when we can set it up. It's an IV pole with a pump that controls the amount and speed of the flow of his food going into this gtube. Well Grey needed to have some lunch before we hit the road to head back to Green Bay. I had to do a gravity feed for him in the backseat. So you hook up his tube to his gtube button and pour his food into a large syringe. You just let gravity pull the food into his tummy. The higher you hold it up the faster the food goes in. If you lower it, it will slow down. So once I found a speed that felt safe for Grey and comfortable for his tummy, we sat and let him have his lunch.

Greyson slept most of the car ride home on and off. We had to wake him up to go to the zoo and he stayed awake the whole time we were there. He was pretty tuckered out and he's like his Mama.. car rides lull him to sleep :) When we got home, Dada got the lights out for Halloween. Adam's favorite holiday is Halloween so I let him have creative control over the decorating for it. I get Christmas :) Adam's sister Courtney got him new lights for outside and some blow up decorations off amazon. The grumpy ghost is my favorite. I love how grumpy he looks- cracks me up!

We also just got word- our TV interview will air TOMORROW! Here is the promo they've been playing. Once we get the video, we will share it here too! We can't wait to see the final product. A huge thank you to TV6, Alyssa Jawor (our interviewer), and Andrew LaCombe (New director and long time friend) for helping us share our story and allowing us to share Greyson with you!

I was also looking back at photos.. these were from last fall..

It's hard to look back sometimes and see how many skills Greyson has lost over the past year. Last October he could still hold his own head up and would sit with assistance. He was still interested in playing, he still gave us smiles and giggles, and was eating purees. Now lost the ability to do all of that. We are planning on giving Greyson the full fall experience this year. Last year COVID stopped us from doing a lot of things. We are hoping now that Adam and I are vaccinated we can do more things and keep Grey safe. We are heading to a corn maze and pumpkin patch this Saturday. It is supposed to be 77 degrees and sunny! Our fall weather has been a little off this year! We haven't been able to bundle up! Greyson did get to wear one of his new Halloween shirts recently. It even glows in the dark!

Everything with Grey has been going really well. We have a meeting today with our CLTS (Child long-term support waiver) case manager to do his 6 month check in. It feels so crazy that we've had this diagnosis for almost 7 months now. It still feels so fresh and raw. I have a feeling it always will. We are working on getting a suction machine for Greyson to help him control his secretions, a shake vest to help him cough if he ever gets gunk in his lungs, and pulse ox to keep on eye on his levels while he sleeps. Right now though, he's doing ok! We've been really lucky that he hasn't gotten sick at all. He had an ear infection but he's on the mend from that.

Alright, Grey is awake and Mama could go for a snuggle! We bought Greyson some new Halloween books so I think we better go read them and find out what happens :)

xoxo,

Kim