Life.. uh.. finds a way.

Greyson's big boy room is finally done! The only thing I'm waiting on is some storage baskets for under his bed and his cube storage. I might add some more dino prints on the wall behind his head too but I needed to put everything together before I added more :)

I love how it turned out! It's so nice to be able to do this for him. My parents were a huge help to Adam and I on this. I'm so happy with how it turned out.

I worked Monday all day and Tuesday we woke up and noticed that Greyson had an ear infection. His ear was red and had some discharge. His poor little ear canal was SO small. We tried to get in with our pediatrician but was unable to so we headed to the walk-in. It's so hard going to a doctor who doesn't know us. We have to explain that he can't stand on his own for his weight. He can't sit up at all, he can't support his head. Yes, this is his normal level of energy. He is always tired and doesn't move often. No, he doesn't talk. It's hard to remind yourself that doctor's don't always know everything. Tay-sachs is rare and they can't know everything about everything. It's just hard to always explain it. Yes, he has seizures, and yes they are every single day. Yes he's on medication. Yes, he has a gtube. Because at some point tay-sachs is going to rob him of the ability to be able to eat by mouth. It's hard to talk about it and not get emotional. We left and Greyson is now on amoxicillin and ear drops 2x a day. Wednesday we met with our speech therapist who has been such a huge help for us. Greyson has been sleeping in later and later in the morning and is just SO tired if we try to wake him up before he's ready. When he's tired, he doesn't drink his bottles well which can cause aspirations. We have been holding off on feeding him until he's been awake longer but then he doesn't eat as much as he used to during the day because he doesn't have breakfast until lunch time. Our speech therapist made the point of that is why we got the gtube. While it's hard and we aren't ready for him to be on full gtube feeds, it's there for us when we need it. We've used it a few times but still offer the bottle to him by mouth. She made the point of just because we use it for one feed, he may take another by mouth later. It doesn't need to be one or the other.. it can be both. It's hard to get out of that tunnel vision of not wanting to give up anything else and focusing on what we are losing with Grey. We are also more thankful for every smile and giggle we get now. We are thankful for the time we have with him. We are thankful for all the snuggles he gives. Tay-sachs is incredibly hard but Greyson is amazing and we are so thankful to be his parents.

Today we had a virtual meeting with NTSAD. We are doing a new interview with TV6 news next week back in Michigan. NTSAD provided us with ideas to discuss and things to speak about. When we first reached out to TV6 about the interview, I reached out to NTSAD facebook group and asked everyone what we should discuss. We want to share Greyson's story but also share awareness for expanded carrier screening before families get pregnant. In previous post I shared that everyone is a carrier of something. Every. Single. Person. What matters is if you and your partner are both carriers of the same thing. If we would have known, we would have done IVF to save our child from this fate. No child should have to go through this.. no family should have to either. The science is there and is being covered by more and more insurances. It wasn't even a conversation that I had.. I had no idea. But rare happens. We are two Yoopers and it happened to us. It happened to our son. We are looking forward to speaking with them and will share the story when it comes out!

xoxo,

Kim