Ehlers Danlos Archives - Page 94 of 101

Chalk one up for the win column

For the last month, we've been struggling with Gavin's IVIG Infusions due to a shortage of supplies. It wasn't a huge deal because we had them send out the missing supplies and he never missed an infusion. While the supplier screwed up, it was my fault for not checking everything when it was delivered. It got lost in the shuffle and fell through the cracks. Gavin's October infusion supplies arrived this afternoon, while Gavin and I were at his appointment. As soon as we got home, I had Gavin go through his new supply box, and pair up all the supplies. He needed to make sure there were enough supplies for eight IVIG Infusions. He did a pretty good job matching everything up. He needed some guidance but he still…

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October 5, 2018

Akron Children's Hospital / Gavin / My thoughts / Pediatrics

Here’s what we learned about the mass in Gavin’s forearm and what we’re doing next

Gavin did pretty good at his appointment today. The nurse came in and did the whole vitals thing. She gathered information and while she was doing so, we noticed a previously unnoticed, second mass. The new one in on Gavin's neck and he was not happy. This is when Gavin began to get agitated and upset. He started to have a meltdown but we were able to get things under control within a few minutes. The doctor examined the mass on Gavin's right forearm. She looked at it for quite sometime. It's one of those things where she can't say there's nothing to worry about and likewise, can't say this is serious and needs to addressed right away. She doesn't know what to think of it. We are also aware…

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October 4, 2018

Gavin / My thoughts

Change isn’t easy for familes like mine and we had some unexpected change this morning

Plans have changed for today. Lizze is not feeling well at all and I'll be taking Gavin to his appointment on my own. It sucks when this happens for a mutilated of reasons but Lizze is truly miserable and can't be there. It's not her fault and I know she's way more upset about than I am. Anyway, we have to adapt to things like this. Unfortunately, as a Special Needs family, very few things ever go as originally planned. We have to be able to adjust, be flexible and carry on despite the upheaval. I live in a house where no one likes change, especially last minute, unpredictable change. Personally, I don't usually struggle with change, so it's my job to help lead everyone else through the change challenge.

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October 4, 2018

Gavin / My thoughts

Gavin’s afraid he has cancer

I shared yesterday about a mass that has been found inside Gavin's right forearm. You can get the background information by clicking here. We've been playing it cool with him because we didn't want him to worry needlessly or at least until we knew there was something to worry about. We didn't think that Gavin was really concerned about it because he brought it to our attention and that was pretty much it. Turns out he's more worried than we thought. He and I we're filling our 5 gallon water jugs for the week and he just sorta blurted out that he's worried it might be cancer. I was caught off guard and didn't really know what to say to that. He has an appointment in the morning to have…

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October 3, 2018

Family Pets / Ferrets / My thoughts / Zane

Zane is finally showing improvement

Progress hasn't been easy but Zane is finally doing noticeably better. We've figured out a way to get him to take his antibiotics that has proven largely successful. He's better maintaining his body temperature, although we do have a space heater helping him in that area. Zane is starting to eat and drink on his own again. He's using the litter box and it seems likes his system is getting back on track. We are still keeping him isolated but only for a couple more days, maybe less. He's got another few days of antibiotics and hopefully, he'll start gaining weight again. We've all been so worried about him and are relieved to see him getting better. We can't wait to see him back to his crazy, hyper, bouncy and…

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October 3, 2018

Gavin / My thoughts

In the continued spirit of we can’t catch a break, Gavin found a concerning mass in his arm

I haven't had a chance to talk about this yet but I'm making the time to do so now. Gavin came home from his Grandparents house on Monday afternoon. Shortly after he got back, he brought to my attention that he found what he describes as a lump on his right forearm. I didn't think anything of it because Gavin freaks out about everything and most often there's nothing to worry about or it's all in his head. Lizze or I will always check things out anyway but we don't assume the worst, if that makes sense.. It was my turn to check things out and when I did, I calmly called Lizze over to look for herself. What I found on Gavin's arm is definitely concerning but I don't…

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October 2, 2018

Autism Parenting Insight / My thoughts / Today's Victory

As an #Autism parent, I have to celebrate the wins, even if no one else gets it

I know yesterday was a rough one for me and I was run pretty ragged but there were some positives. I wanted to quickly share one of those positives with you and encourage you to try and focus on the positives in your life. ☺ One of the big frustrations I have at home is the amount of screen time the kids have. In a more typical situation, it's much easier to limit that screen time and sorta tamp it down to a more reasonable level. Most kids don't like the idea of giving up screen time in general. For kids with Autism, it's a much more complicated situation and I know many of you out there may shudder at the idea of taking your child's tablet away. It's not…

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October 2, 2018

General Update / My thoughts

Here’s a MASSIVE update from just the last 24 hours

The last 24 hours have been quite challenging and I'm going to explain why over the next few pages. Last night, Lizze and I did end up seeing a movie. It was awesome to get out for a little while. Unfortunately, Lizze wasn't feeling well after the show, so we cut the night short. No sooner did we get home than I got a call from Elliott saying that while they were visiting family, Emmett got bit by a dog that was there. Elliott was freaking out, Emmett was freaking out and I was trying to piece together what happened. Lizze's mom was trying to explain but Elliott wasn't making it easy. Long story short, I was pissed the fuck off about the dog. It's family, which complicates things. m…

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October 2, 2018