childhood disintegrative disorder Archives - Page 266 of 276

From disaster to happy ending

Elliott had his occupational therapy re-evaluation yesterday. When it was time to go, he freaked out because it cut into his routine. Once I physically got him there, he was okay. For the most part, Elliott did really well. There are a few things he's struggling with, and they may refer him to physical therapy, as it may be a better fit. There's obviously sensory issues that OT would benefit, but his tests have to be scored and a plan put together. They will be calling me with his first appointment in the near future. As it stands, it looks like he will go to OT once a week for awhile, and we'll see how things go. If he reaches his goals, he may be moved to PT instead. PT…

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July 18, 2017

General Update / My thoughts

I’ll just leave this update here

It's been a really long day, not to mention, exhausting. This is the first time I'm had the time or the energy to write anything since yesterday. Sometimes I have those days where it just seems like everything goes wrong, even though there were some definite blessing tossed into the mix. I don't know about you, but it's harder to see the positive on a bad day, than see the negative on a positive day. Maybe that doesn't make any sense. It did in my head, so I'll just leave it there. ☺ There's a few things I need to update you on and I'm working on it. I want to share how Elliott's appointment with OT went, as well as some updates on Gavin, and Lizze. Those will probably…

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July 17, 2017

Emmett John / Fever Cycle / My thoughts / PFAPA

An unbelievably difficult afternoon

It's been a mixed bag this afternoon. Everyone is glad Mommy is home, but it's also been a long weekend. Elliott's doing well, but Emmett is really struggling. I'm fairly certain that Emmett is entering into a fever cycle. I've been tracking his temperature over the last few days and it's been mostly 99°F or higher. That's not technically a fever but it is indicative of a fever cycle, along with inflamed joints. He's been unbelievably difficult this afternoon. He's overreacting to everything, melting down as a result, and driving me crazy. The poor kid is miserable, and there isn't anything we can do aside from extending an insane amount of patience his way. On a positive note, Nokia Health sent me something pretty amazing, and it's been a huge…

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July 16, 2017

My thoughts

It’s a really good feeling

Lizze is home and that's really nice. The boys were super excited to have her home. There's a different feeling in the house when all five of us are home. It's a good feeling, just to be clear. On the back end of this positive moment, is the fact that my back is still out. I'm in a shitload of pain and having a bit of a hard time. I was doing okay yesterday, but woke up this morning and knew it was going to be rough. It's kinda hard to sleep funny on my mattress, so I'm not sure what happened. If this doesn't get better soon, I may have to bite the bullet and do a seven day cycle of prednisone, to decrease the swelling. I don't do…

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July 16, 2017

Elliott / My thoughts / Occupational Therapy

It’s gonna be a huge day for Elliott

On Monday, July 17th, Elliott will finally be getting back into occupational therapy. He's been on the wait list for over a year and was originally scheduled at the beginning of the month but the OT needed to reschedule. I'm not entirely sure who's more excited, me or Elliott. lol He really needs this. I hope it helps him to gain strength, build coordination, and confidence. When Elliott has first evaluated a few years ago, they said he had the worst muscle tone they'd ever seen. I can't say I disagree because his joints are extremely loose. Loose joints aren't something that can be fixed. The only thing you can do is strengthen the surrounding muscles, so they can aid in compensation. I think I may take Elliott by myself,…

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July 16, 2017

My thoughts

I squeezed in this much sleep lately night

I was able to squeeze in four hours and six minutes of sleep last night. That's almost a record for me, so that's awesome. I'm feeling pretty good today, and more motivated than usual to accomplish some things around the house. Lizze is on her way home, but unfortunately, isn't feeling well. Hopefully the four or five hour drive will be kind to her. Alexa claims it's going to be a nice day, and thus far, she's been spot on. It should be a great day to walk and that will make three days in a row. I want to get back into the routine of walking the track everyday. Our treadmill is not in good shape, so I'd much rather walk the track. Anyway, I hope your day is…

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July 16, 2017

Gavin / General Update / Heartbreak / My thoughts

Heartbreaking signs that he’s getting worse

Gavin's showing more and more signs of regression. As someone who sees him all day every day, it's harder to pick up on things like this because it's generally a gradual process. When someone sees him for the first time in awhile, it's much easier for them to pick up on the changes. I've been paying closer attention lately because I've been worried that he was experiencing more regression, but wasn't sure. It pains me to say this, but he appears to be regressing once again. Regression is a huge part of Childhood Disintegrative Disorder, and what sets it apart from other, more common forms of Autism. Gavin's losing skills he'd previously mostly mastered. His executive function is very much declining. He's become more unorganized and has a shrinking vocabulary.…

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July 16, 2017

Gallery / My thoughts

Our guy time has come to an end

The boys and I had a great guys day yesterday. Lizze will be home in a few his from her trip with her Mom, and our guy time will come to an end for now. Last night we walked the track again. Emmett only had to stop a few times to fix his crocs and that's awesome, especially considering we walked a mile and a half. I'm super proud. ☺ Elliott and Gavin did great as well. We finished in just about thirty-four minutes, and that's respectable. After the exercise, we wanted to do something special for our final guys night. We decided to watch the Kong: Skull Island via Google Play. Elliott wasn't in the mood to watch a movie so he hung out in his room, after eating…

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July 16, 2017