Hurry up... and wait.

They always say no news is good news. They are right in our case I suppose. Greyson is still doing well and still a strong little man. No big news. He finished his EEG last week and we are hoping to hear from the neurologist this week. He seems to still have the same small little seizures throughout the day but they only last a few seconds. He usually has them and once they are finished he always makes his sweet little noise like "hi Mama, I'm ok!"

Adam and I are doing ok. We are both doing the best we can as far as the day-to-day goes. I think we are both still feeling frustrated with the healthcare system and trying to navigate everything on our own. We can't seem to find a case manager/social worker to help us and that has been incredibly frustrating. As I write this- we just get a call from the palliative/hospice company saying Greyson doesn't qualify yet for their services. I think that's the biggest frustration. We want things in place so that when we DO need your help we aren't scrambling like we are doing now. My son is dying and it's like pulling teeth to get someone to help us. His main doctor- while she's absolutely amazing- has been zero help finding resources as far as like a case manager goes. She did help us get in to see his neuro quicker than we originally had scheduled, but seriously? We need MORE help. We shouldn't be on the phone all day trying to find someone to help us. Then trying to order his adaptive equipment is a joke. We need his PT and pediatrician to write letters of need, then someone needs to come in from the equipment place to watch a PT appointment to see that yup, he does need adaptive equipment. Then they order it through insurance. Insurance will more than likely deny most of it and then it goes to our secondary insurance which will hopefully approve everything but that takes months. I honestly just want to scream and say we are LOSING PRECIOUS TIME. We need a seating device for him. We are either holding him or he's on the floor. He can't sit up, he can't hold his head up on his own, he needs something to help. I want to sit face to face and play with him. We need a supportive stroller and a bath chair. I wish the process of getting devices that we need would be more streamline and easier. It shouldn't be this difficult. It's not like we are trying to cheat the system into getting equipment.. I don't know of any family with children who don't have special needs who would want this equipment. They don't need it.

I think the medical system is our biggest frustration right now. I can't imagine doing this without the help we've gotten from the other families from NTSAD. They have helped us know what to ask for and know who to ask.. now we just need our providers to help us. It seems like they just keep passing us off to the next person. "Oh, I don't do that. That would be your pediatrician" "No, I don't do that, it would be your neurologist" "no, I don't do that, you would need to talk to this person". We just need help- like just help us. This is new for us, and I understand we might have a rare diagnosis but we can't be the only family in Green Bay with a child who has a terminal diagnosis. There is no way. There is no way another family isn't struggling the same way we are. It's not like GB is a super rural town in the middle of nowhere.. we might not be as big as Madison or Milwaukee but how do we not have better resources in places for families? It's not ok. We are grieving and we want to spend our time with Greyson, not on the phone trying to find help. It's bullshit, quite frankly. I understand if the person doesn't know who would help but maybe they could take the time to FIND the correct person who could help us, instead of just passing us off. It's like when you call someone at customer service and they just keep transferring you. Stop transferring me and listen to what we need and find me the correct department. We've been on this phone when we should be with our son. It's overwhelming. It's annoying.

Other than that we've been doing ok. Last weekend, two of my girlfriends came to visit. I've known Steffani since preschool and Laura since middle school. These girls have been with me for the majority of my life and we've been through a lot together. It was really nice to have them here and just have a minute to have my girls with me. It was nice to see them with Greyson too. You can tell how much they love him and how he loved them. They have only met Grey a few times but we haven't really been able to spend time because of COVID. Now that we are all vaccinated we felt more comfortable and I'm so glad they made the trip to come see us. We didn't have any major plans but it was nice to just be together and have that support. It's funny how much you change as you get older too. Instead of going out to bars at night, we had a few drinks and played board games or cards. I wouldn't have changed any of it. I'm really lucky to have these girls (and the rest of our high school crew) in my life.

We also got our family photos back from Marie Kelsey photography. Kelsey did a fantastic job capturing our family. We are seeing her again in July and I can't wait for more. I think we are going to try and get more family photos done before things get too hard with Greyson. I'll make a post later and share more of the pictures.. but here is just a little sneak peak :)

xoxo,

Kim