When do you get to be a parent?

We got our family photos back that we took a few weekends ago. They turned out so great. The photographer did such a wonderful job capturing our family. My sister Denise and her daughter Ella came along with Adam's sister Courtney. We didn't get the whole immediate family but thankful we had some of our Aunties and Cousin there!

It's hard to choose- but here are some of my favorites!

We are also doing a new project through our complex care team in Madison. It's a way to help educate new medical students on what happens after families with complex kiddos leave their offices. Greyson's care is way more complex than just the hour that they see us for his visit. He needs 24/7 care that we need to provide to him ourselves and this project kind of helps to show new medical professionals just how complex life outside the hospital can be for some families. We had a zoom meeting with one of the medical students and another parent last week on what to expect during the recorded interview and it was over an hour long of us just sharing Greyson. It was so much information and I feel like we just scratched the surface. Adam and I made the decision pretty quickly after diagnosis that we were going to be really open with our families story and Greyson's diagnosis. We want to be a source of comfort and knowledge for other families that may walk in our footsteps one day. Hopefully one day Tay-Sachs will be a curable or treatable disorder.. or something that we've eradicated through genetic testing but until then, we want others to know they are not alone. Even families with just medically complex children, not necessarily just Tay-Sachs. That's a huge part of this blog.. to share that hey, yeah, sometimes your day-to-day is absolutely draining. That sometimes you might have a bad emotional day or you may have a day where it almost feels like a "normal day". All of which is perfectly normal.

I have had some pretty good days lately. Greyson has been doing really well on his epidiolex medication and using his oxygen at night. He has been more alert during the day and waking up from bedtime earlier than previously. Don't get me wrong, I still shed some tears almost every night after I lay him down. We've also had two pretty rough nights the past week. Grey has needed some serious suction, more than previously. There was one night last week where I awas off the next day so I told Adam to go get some sleep and I took over. We were up from 4am-6ish just suctioning and trying to get Grey comfortable. After 6am I was just done so I unhooked his pulse-ox and scooted his oxygen closer to the glider. I changed his diaper and picked him up. I placed him belly down on my chest to try and give gravity a chance to get it out for him. We ended up sleeping like that until 7:40 when my neck had enough :) I carefully laid him down and he slept in until around 1:30pm! I had to wake up for our zoom call that day but after a cup of coffee I felt much better. It was a quiet day too. The only thing we had planned for that day was taking Grey swimming at 4:30 with my sister. Adam has class Tuesday night so my sister and I have been taking Greyson swimming.

Nothing super new on Greyson front- which is a really good thing. The oxygen has been helping at night and not a whole lot of appointments until next month. Next month we meet with his complex care team and neurologist out of Madison but those will be zoom appointments. We do head down to Madison at the end of the month to meet with a new specialty. They help look at his hands, feet, spine- etc to see if we need any equipment or braces to help him for comfort. We also have an appointment in Green Bay to see his GI doctor and nutritionist. We are still doing physical therapy but scheduling is a little harder. We are trying to schedule when both Adam and I can take Greyson so that we have an extra set of hands so working around my work schedule and our PTs schedule has been hard. We will definitely figure it out though because he loves it and we love his PTs. It's nice to see them and hear ways to make him more comfortable throughout the day.

Adam is kicking ass in his classes. They are intense and he's doing a lot of work to stay on top of everything. I'm tired between trying to take things off Adam's plate so he can focus and work, but still doing well. The house is a mess and my craft to-do list is getting pushed aside, but all things that can wait. We've been talking about finishing our basement up a little bit so we can have more of a dedicated "office" and craft space. Our basement right now is unfinished and it's become a catch-all for everything. I really need to go through and get rid of somethings and organize things that I don't want to get rid of. I have this vision in my head of how the basement could look and maybe one day when we have a little more money and time we can finish it up. We want to put up some drywall, better lighting, and a floor. We just have the concrete down there and it's freezing in the winter. One day that will be a project for us!

I also just applied to the same college Adam is attending. I am going back to school for nursing too. I'm still a little torn if I want to focus on nursing or if I want to work in genetics. Either way, I know that I need to do something to help other families and help children. This diagnosis has changed our lives and as I've stated before, I am going to make damn sure that everyone knows Greyson's name and his legacy. His little life is going to change the world. I want to do this for Grey and every other child and adult that has been affected by a rare disease. There needs to be more conversations about rare and more about how much genetics plays a roll in your children's future. I just need to make sure I change the world.

I think the biggest struggle right now for Adam and I, is time. Time to do things we WANT, time to get things done, time to do something together, time to be alone, and just time to relax. Even when we are sitting in the living room at the end of the day it's like your mind is constantly running and thinking of what needs to still be done. Then at bedtime it's like you're sleeping but waiting to hear if Greyson coughs or his pulse ox alarms. It's hard to find time to set aside to do the things we want to do.

We also struggle with finding time to just be parents to Greyson. Our day is full of medical care. It's tubes, wires, monitors, suction, and dishes. It's like we are care givers.. taking on nursing jobs without proper training. A job we didn't apply for but we were thrown into. We would do anything for Grey but sometimes it would be nice to just be his Mom and Dad. Not nurse Kim and nurse Adam. There is not enough time in a day some days. We used the shake vest with Grey and his cough assist after to try and break up some of that gunk he's been having. A lot of families in our support group do these treatments 3-4 times a day plus nebulizer treatments. Then on top of those treatments you have tube feedings which have to be spaced apart from the shake vest treatments. It makes me a little concerned because our day is already so full of things, how would we add all of that in and still have time to be Mom and Dad? It's scary to think about. It may be in our future and we will have even less time to be just Mom and Dad.

Right now our schedule isn't even as bad as some kiddos. Greyson gets meds 4 times a day. 8am, 4pm, 8pm, and 12am. He gets 4 feeds a day though his gtube. Typically around 8am, 1pm, 6pm, and 11pm. Each feed is what the nutritionist has us on which is pediasure and a lower calorie version. So he gets 2 cans of regular pediasure and 2 cans of "diet". His feeds typically run an 45-hour long or so. We also add in water through out the day. He gets 1/8 tsp of salt with his morning feed and miralax with his lunch. Trying to keep everything movin'! He typically naps a few times in the afternoon but we can do feeds even while he sleeps. The other thing we are testing is Greyson seems to be having almost like acid reflux or something with the regular pediasure. He's been really uncomfortable with those feedings the past few days so we are testing if the lower calorie one sits better with him and if it does we will have to reach out to his nutritionist to figure out our options. We are not worried about Greyson's low weight anymore- he has definitely caught up and then some :) My little preemie was born at 4lbs 7oz. Now he's 41lbs :) Adam and I are going to have some amazing arm muscles from lifting him!

**OH** We also got Greyson's Tiny Superhero Trading cards in. If you would like one, please use the "contact us" button and send me your address. I ordered 300 so we have plenty to share.

Alright- well I'm going to head upstairs and make some dinner and snuggle my babe. I hope you have a wonderful week ahead.

xoxo,

Kim