Monday
Monday was a Monday in the truest sense of the word. Dave said, though, that Monday morning put his entire week into perspective because, well, it couldn't be as bad as Monday morning. I was just about to take a shower when Dave informed me that he needed "a little help."
Let's say Dave and I have different ideas of what "a little help" means. In this case, it meant Teddy had removed his diaper, discovered homemade brown play-dough (as someone else said almost making me spit out my food laughing) and smeared poop into his carpet, all around his door handle and on his body. Even better was when I stepped in the room, and Dave warned me to be careful because there was poop everywhere including the door knob I had just touched. Just a bit late with that warning.
I'm grateful Dave was there to discover the mess. He showered again ... with Teddy ... while I scrubbed and sanitized the room. And then I showered, but a shower doesn't quite fix that.
Oh, and Monday was also the day we learned we didn't have staff, so I had to leave work early to be home when Teddy arrived home. On the bright side, that gave me time to work on multiple loads of laundry that I had to do for some reason.
Tuesday
I feel like Tuesday was uneventful. Maybe I'm blocking what happened from my memories, but I'm pretty sure I'd repress Monday instead of Tuesday.
Wednesday
We learned that Teddy will be featured in a research paper/presentation at a genetics conference in March! Someone had reached out several months ago, inquired if we'd be interested, and we supplied a bunch of information. Her proposal was accepted, so she informed us and requested photos to use.
We're super excited that there will be updated information on CDG-PIGN because there's so much more positive than what the original research shows. Any research can help to raise awareness, and we've only been waiting since Teddy was diagnosed in 2015 to get him into research. Our genetics team went through some changes and is incredibly backlogged ... as in I'm not sure it'll ever happen.
Thursday
Remember how Teddy's doorknob got covered in crap earlier in the week? That meant I threw out the child safety lock because it was packed with poop. On Thursday night, AJ ran downstairs to grab something for me right before bed. I locked Teddy's door from the outside to keep Teddy from following AJ, knowing that AJ would be right back to unlock the door. AJ returned, we read stories and then AJ discovered he locked us all inside Teddy's bedroom accidentally when he returned.
Some of the first words out of my mouth, "You better make yourself comfortable. We're going to be here a while."
I am not good with door knobs. I can manage, but I don't like to take them apart, fix them, etc. I had no phone to call for help. Dave was gone for several hours yet. I didn't even have a phone to Google guidance. But I did have a screwdriver and sheer determination to get out of that room and get those kids to sleep. I succeeded with only minor tears from AJ and almost me.
Friday
Kids are at school. I have the chance to catch up on a few things, including finishing a sewing project. I made a weighted blanket for one of the other families whose son has CDG-PIGN. Actually, both their sons have the disorder. But one of the boys struggles to settle to sleep, similar to Teddy. (I joke with this mom that she's living my future life, so she can win the lottery any day now, so my day would be coming in 10 years.) She had mentioned wanting to try a weighted blanket for him, so I made one since I have the supplies on hand. I can't do everything for our PIGN families, but it fills my bucket to help any of them in any way I can. It's not an easy path we're on, but it's so much easier to have others who walk the path with us, ahead of us and behind us.
Saturday
It was a long 6 hours in a car to get to and from our niece and nephew's fun birthday party ... plus chasing Teddy there. So to relax we settled down to paint our entire kitchen and living room ceilings. Wait, that's not relaxing, but it's a project that's been years in the making, so it was on the docket for the weekend. When Dave went to the store to get better supplies (as in a ladder instead of a rickety chair that would be the death of one of us, leaving only one of us to finish all the work and raise the children), I determined the thumping sound upstairs was Teddy still awake. I discovered this when checking on him:
His room wasn't possessed by ghosts, but he had wiggled under his fitted sheet. He hadn't ripped off a corner to crawl under, just wiggled inside. I determined I should pull him out to avoid suffocation through the night, which then necessitated laying by him until he fell asleep. I might have told him that was way better than painting the #$%# ceiling.
Sunday
We finished the ceiling. All rested, relaxed and ready to start another week. Well, let's just say another week is starting even if that's the only true part of that sentence.
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