Return to sender

I haven't posted in two weeks, Mostly because life has been a little busy but those grief waves have been coming and going pretty quickly.

Work has been going really well for me lately. I'm really thankful to be part-time. It's been really good for my mental health. It's been less responsibilities and less hours. I'm able to be home more and spend more time with Grey and Adam. It feels good to have a better balance right now. I've been able to help out more when I'm needed and feeling confident with my new role. I am really thankful they worked with me to allow me to do this.

With me working, I typically do bedtime so Adam can have some alone time and get some rest from his day. I think that's why I usually find the trough of that grief wave. I always end up getting teary eyed at some point. I just don't want these nights to ever go away. I don't want his sweet little snuggles and coos to ever go away. I have been giving him his bottle and then snuggling for longer than technically needed-- but definitely needed for me. The other trough I've been hitting lately is seeing his baby things- things he used to use and no longer can. We have a lot of toys for him.. a lot. We have a 9 cube storage unit in our living room filled with toys. He is not interested in them anymore. He doesn't "play" like he used to. We have an activity center for him that he can't use anymore because he can't hold his head up. It's from skiphop and he used to love playing in there. We put it together Easter weekend 2019. It allowed him to turn in there and I remember the first time he figured out he could move in there- I was so proud of him! I couldn't believe he learned how to do that all on his own. Now, my sweet, smart boy can't even play in it anymore. All because this stupid disease that has been hidden in our families genes for generations.

One of the biggest positives lately is we FINALLY got some of Greyson's equipment in. We are working with a local company to order the equipment. They met with us at our home, then had to meet with us and our physical therapist. Then the PT had to write a letter of need. The orders go off to the insurance company and that's where they hit a snag. The insurance companies are an absolute pain to work with. It's mind-boggling how someone can sit behind a computer and tell me that "nah, your kid doesn't need this adaptive equipment". A parent who doesn't NEED these items wouldn't be asking for them. It's not like it's fun things for other kids. We asked for a wheelchair/stroller, bath chair, ppod chair, special tomato chair, and a new more supportive car seat. The stroller is more supportive too then your typical stroller. It supports his head and his trunk to help keep him more comfortable. The ppod chair is a supportive base with a bean bag type insert that helps get him up so that we can interact with him instead of holding him most of the time. Adam's sister got Grey a beanbag chair we've been using and that's been nice while we wait! We got the stroller today and the bath chair. We are also looking at buying a new car. His equipment will not fit well in our little sedans. We are looking at getting a minivan. The new minivans look amazing. They have captain style chairs in the middle of the van that can slide. So we can load Greyson in his car seat by the door and then slide his chair over to the middle of the car which is the safest space for him. Plus the amount of storage vans provide would be so nice for traveling with him and everything we need to bring. The downfall- the huge price tag. We have some money saved but not enough to buy a new car. I think I would run into issues trying to get a car loan too with my only income being part-time. I've been trying to find programs that could maybe help us but there really isn't anything out there for that purpose. Hopefully eventually we can test drive ones and find a good deal or help.

Greyson has been fighting his sleep at night too lately. He has been going to bed much later since we got home from his surgery. It's currently 11:17pm and he's up in his crib making noise. I think we were done with our bottle and snuggle at 9:30 tonight. He used to go to bed between 6-7. He's been sleeping in until 9-10 lately. His schedule is off but it's also hard to get him back on. We are kind of letting him dictate what he needs and we can work on getting things on track later.

Before I get sucked into another topic- here are some pictures from the past week and his new stoller!

xoxo,

Kim