I feel so helpless

I'm really getting worried about Gavin. He's definitely slipping in several key areas of his life, despite how hard I know he's trying. 🙁 It breaks my heart to see him struggle the way he does. Saturday was a ton of repetitive talking and question asking because he couldn't remember a great of what was going on. I'm not sure how else to explain it. He would ask a question, to which he'd already been told the answer (often several times), and when I answered him again, it was like the first time he was hearing it. I feel so helpless because there's nothing we can do to prevent, slow down or put a stop to this downward spiral of cognitive ability.

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Maybe it’s a #Depression thing

My major accomplishment today is doing Gavin's IVIG infusion. I'm gonna be honest and say that the bar is set pretty low at the moment. I'm feeling rundown and sorta just blah.. Maybe it's a depression thing or maybe it's because everyone's been stick and it's taking a toll. Either way, I'm going to push myself to get some things done around the house today.. ☺

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Now his mattress is uncomfortable

It was a rough night because Emmett isn't comfortable for him anymore. He says it hurts his ribs. I'm not sure what that means or how that's possible, but it seems to be a real problem. I'm thinking it's sensory related, that much is obvious but what I don't know is why now? It could be as simple as too much change in a short amount of time. If you think about it, he slept in four different beds while we were on vacation. Maybe that messed him up just a bit?

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Gavin’s not doing so well and here’s what’s going on

I was running some errands yesterday and Lizze called me. She was concerned because she's noticing that Gavin's appearing to be more confused than he normally is. I don't remember exactly what she said had happened but I've noticed it as well. In the morning, I'm going to call Dr. Reynolds because I don't know if this is related to the changes in his meds or if this is a natural trend that would be happening regardless. Some of the things I've been noticing is how much he struggling with very simple tasks. We've been avoiding assigning complicated or multipart tasks to Gavin because they are simply outside of his ability. Lately, one step tasks have been proving to be problematic. Yesterday, I handed Gavin a replacement toothbrushe and asked…

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A tour of our Give Kids the World condo (@GKTWVillage)

I meant to share this eariler but it was on a different phone and I just dug it out. This video is a quick tour of the condo we lived in for six days while we stayed at Give Kids the World Village in Kissimmee, Florida. Perhaps someone will be heading down and would like to know what to expect. Maybe you just want to see where we stayed. Either way, here you go.. ☺ https://youtu.be/jtko4TVWcfU

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I think my soul needed a recharge

I've been unusually tired this week. I suppose I need time to recover from our vacation. It's also possible that I'm fighting off what Lizze, Elliott and Emmett have been dealing with. Either way, while I'm short on energy, I'm feeling a renewed sense of hope and that's priceless. While we were at Give Kids the World, I didn't have to worry about anything. It was an escape from a significant amount of the things that cause me distress. I've been trying to figure out a way to better explain what happened to me while I was on vacation and I think I know how to do that now. The best way that I can describe what happened to me while staying at Give Kids the World is this: I've…

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The transition home is proving more difficult

The transition home from Florida is proving to be a but harder than originally thought. The most profoundly impacted is of course, Mr. Emmett. He's still very easily overwhelmed. Dr. Pattie suggested that it could take awhile before things get back to normal. One of Emmett's biggest struggles involves sleep. He's not able to fall asleep in his own bed. Right now, he's having to fall asleep in our bed, and even that's a struggle. I'm hoping that as more time goes by, he will decompress and feel more comfortable in his own bed again.

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