In an effort to make the best of the time we had yesterday, I packed everyone up, including Ruby and we hit a local nature trail. We only took the trail for about 1.5 miles but it was fun. Afterwards I took everyone for some ice cream before heading home and having a quiet evening. [foogallery id="81113"]
As the day has gone on, Gavin's sounding worse and worse. That doesn't mean there's anything to worry about but I worry nonetheless. He's most likely dealing with the same cold that Elliott and Emmett keep giving back and for to each other. Logically, I don't think that there is anything to lose sleep over but at the same time, we can't afford to be complacent either. Monday he sees his immunologist anyway and if she's concerned, we'll deal with it. He's probably going to need bloodwork done so we held off on Gavin's labs for this past week and figured we could double dip when she gives us a new order. There isn't a great deal that we can do to help Gavin but if we can limit his…
I'm so used to being an Autism parent that very little surprises me anymore. There are times however, that one of my kids does something that is so obviously Autism related in nature, that I can't help but stop and smile. ☺ Yesterday, I made a quick trip to the grocery store and Emmett helped put the groceries away when I got home. Putting the groceries away turned into reorganizing the refrigerator in a way that made sense to him. I couldn't help but smile and I snapped a picture and thought I would share.. ☺
I have been sharing how stressed out and worried I am over Gavin's current immunological crisis. I consider it a crisis because there is a nationwide shortage of GAMMAGARD. This medication literally replaces his broken immune system and keeps him from getting sick or worse. Until we resolve the issue and solidify a working plan for moving forward, I consider this a potential life threat and therefore a crisis. The only thing that could make this particular situation worse is if Gavin were currently sick. Unfortunately, that has come to pass because Gavin is currently sick with whatever Emmett and Elliott have been fighting off. We're probably looking at a simple cold but when your child has a severely compromised immune system, only one dose of GAMMAGARD left and no…
I'm feeling a smidgen better than I was last night, although I didn't fall asleep until about 7 AM. From there I got a few hours before waking up and getting myself moving. I don't want to sleep the day away for many reasons but the most prominent being a desire to not perpetuate the problem by sleeping all day and not being tired at bedtime. That's my goal anyway. Who knows if it's going to actually work. Everyone seems to be in a mood today and I'm not sure why. I also don't know what I can do to sorta break everyone free of their moods and redirect us onto a better course. I'm feeling torn between being responsible and being a bit more spontaneous. I don't remember if…
This is one of those posts that some people will complain about for whatever reason. Maybe they feel it's too negative or that I'm just looking for sympathy, but whatever. I'm writing this because keeping it inside is eating me alive and the only way I know how to process these feelings is to write about it. I feel like I'm failing my family and whether it's true or not is irrelevant because it's how I feel. As a parent, we all want what the best for our kids. As a special needs parent, there are so many things outside of my control and so many burdens I can't take away from my kids, it makes everything else feel so much more important. When I can't take away my kids…
I've talked in great detail about my battles with depression and the challenges I face as an Autism parent. Those things have sorta drowned out everything else and that includes a major battle I'm fighting that makes all of these things worse. For the last few weeks, I've been struggling with insomnia. People deal with insomnia all the time and I'm not entirely new to insomnia either. During my withdrawal from Paxil, I went through a period of time where I simply couldn't not fall asleep. It was a rough go for a little while but as quickly as it appeared, it was gone. Out of nowhere, it's come to visit again and like any unwanted houseguest, it's causing problems. As an Autism parent, I don't get enough sleep as…
I'm going to sum things up for today pretty quickly because I'm really tired and hope to actually sleep tonight. My number one take away from today is pretty straightforward but also very positive. I spoke with legal at Akron Children's Hospital and seem to think that gaining medical power of attorney will work. They need to double check a few things and they will get back to me. This is enormously positive news and while we don't know anything for sure, it sounds like it will all work out. ☺