Read more about the article It’s things like this that make communication challenging 
Gavin / My thoughts

It’s things like this that make communication challenging 

Gavin had a weird night last night. Right after dinner, I got Gavin's IVIG infusion going. The weirdness started when he decided to stop eating dinner because he thought he might get reflux if he finished it. He was afraid that if he ended up with reflux, he wouldn't be able to get his infusion tonight and would have to wait until today. I didn't argue with him because whatever... It's not worth it. Gavin's right in the sense that I wouldn't delay his infusion if he were dealing with reflux. The infusion is hard enough on his body and if something happens during or after the infusion, I need to know that he was okay prior to beginning. Does that make sense? Maybe five minutes after getting the infusion…

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July 18, 2017
Read more about the article Emmett took the lead, and the cart
Family Fun / My thoughts

Emmett took the lead, and the cart

Yesterday, after all the OT fun, I took the family to the park. While we were there, a nice lady offered to take our picture for us. That was super nice of her. ☺ After we got done exploring the Garden Center, it was time to hit the grocery store and pick up Lizze's birthday cake. Emmett took the lead, and the cart while we were shopping. He did a nice job of pushing the cart, and there were no causalities.. lol

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July 18, 2017
Read more about the article From disaster to happy ending
Elliott / Gallery / Occupational Therapy

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
Read more about the article I’ll just leave this update here
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
Read more about the article An unbelievably difficult afternoon 
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
Read more about the article It’s a really good feeling
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
Read more about the article It’s gonna be a huge day for Elliott
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
Read more about the article I squeezed in this much sleep lately night
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