Today was a very rough Autism and Special Needs parent day for me. sometimes life is cruel and all we can do is find ways to physically survive. Here's what I did today.
January was kind of a wash for me in regards to walking. When my grandpa passed in early January, that sorta took the wind out if my sails and I just stopped walking everyday. I was also experiencing high levels of anxiety and that only made things worse. I was averaging about 80 miles a month and I just bombed in January. I've cut myself some slack and I'm not beating myself up over it. Beating myself up over it serves no purpose. What I am going to do is correct this going forward. That being said, I made myself go walking this afternoon and it went pretty well. It was cold but not too bad. I'm glad I went and was able to grab about 3.1 miles.. It felt…
We're having a really good day. It's not like it never happens but when it does it's definitly worth sharing because it's a hugely positive thing for us. Gavin's been sleeping for most of the day thus far because yesterday took a toll on him and he needs his rest. This is one of the reasons we try to avoid exciting events with Gavin. They simply take a toll on his body and that can be dangerous. Our motto is everything in moderation. As for everyone else, it's been a pretty good morning. I don't think I've heard any fighting or arguing and that's awesome. It's so nice to see everyone getting along today. :-) The only thing we have on the agenda is celebrating my Mom's birthday this afternoon.…
I'm going to start with the good news first because I feel pretty good about the good news. ☺ We celebrated Gavin's birthday today and I think he really enjoyed it. I picked the boys up from school and took them to pick out some things for Gavin that could be from them. We then picked up his cake and ordered Chinese food. It went pretty smooth and I'm grateful for that. Gavin decided on the 1st Transformers movie and we all watched it with dinner. He's really happy with everything and that feels good. He spent all morning playing Kingdom Hearts III and he says it was worth the wait. ☺ Unfortunately, this couldn't just be a good day. There's always a counter weight that seems to keep things…
It's a big day today for a number of reasons. First of all, we're celebrating Gavin's 19th birthday. He actually turned 19 on January 18, 2019 but asked us not to celebrate it until February 1st. He wanted to wait because Kingdom Hearts III was released. That's what he wanted for his birthday and he didn't want to celebrate until then. I'm not entirely sure what we're going to do yet. Gavin wants chinese for dinner and mentioned he'd like to watch a movie. Maybe we'll go to a movie or maybe we'll rent one. I suppose it depends on the direction the day takes. After I pick the boys up from school, I'm taking them to the store so they can pick out some things for Gavin. We'll also…
It's not like receiving a donated liver or kidney, where his body could reject it. That said, Gavin's body can struggle to accept the antibodies. He can run a high fever, have seizures, experience anaphylactic shock or an autonomic crises can be triggered.
I hope everyone is staying warm. We're having a heck of a time keeping our house warm. It's terribly inefficient and because it's so freaking cold out (-30°F), the furnace is running constantly and the house is barely 64°F. Extra blankets for us tonight. ☺ Anyway, we've had a pretty good day. There were some rough patches but we made it though. I still don't have any answers on the Gavin front because they're still trying to work everything out. I mentioned previously that this is a nightmare because IVIG meds are a specialty medication and insurance has certain requirements. It's just a frustrating, convoluted mess, and at this point, it looks like Gavin will miss his Friday infusion as well. If you're keeping track, that will be two infusions…
It's been a low-key day so far. Emmett's not in the best mood because he's not feeling well. He's going to be a handful today but the poor kid is miserable and we're going to have to exercise patience and compassion. Elliott's in a good mood and has been spending time with his sketchbook. I love when he's being creative. I love when any of my kids are being creative, especially Elliott because he needs the constructive outlet. Gavin's sorta in his own world right now. That's not anything unusual but he's struggling to perform basic daily functions and it's heartbreaking to watch him go through this. He's very preoccupied with his missing infusions and maybe that's sapping his resources, but either way, it sucks. As for Lizze, she's up…