Ehlers Danlos Archives - Page 90 of 101

Emmett has another birthday party today

This is the second Saturday in a row that Emmett has a birthday party to attend. I'm thrilled that he's got the opportunity but two weekends in a row is a bit much. 😜 This afternoon he has one of his best friends party and it's at Chuck E Cheese. It'll be just Emmett and I because this is way too loud for Lizze. I'm not personally a huge fan of the noise and the crowds but I don't have a constant migraine or severe social anxiety. Hopefully, this will be fun for Emmett and his friend. I'm so happy that he's able to do this but I not so happy about the inevitable overstimlation and meltdowns that will follow. Par for the course I suppose. ☺

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October 20, 2018

Gavin / My thoughts

You won’t believe where we found his missing #IVIG Infusion supplies

After some serious searching in every conceivable place, we finally were able to locate most of the missing supplies. We found 4 sets of tubing and 2 needle sets underneath the small couch in our dining room. It was the last place we looked because it didn't occur to us that they could have been crammed through a half inch gap between the couch and the floor. I can barely fit my hand under there. I don't know how or why they were under there and at this point, I honestly don't want to know because it will just make things more frustrating for me. We're still missing a needle set and we'll continue looking for that. The only thing I know for sure is that I'm grateful we found…

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October 19, 2018

Autism Parenting Struggles / Gavin / IVIG Infusion / My thoughts

This is a perfect example of why being a #specialneeds parent can be so exhausting, frustrating and overwhelming

We're not off to a good start today. I basically woke up to Elliott and Emmett fighting and it went downhill from there. I could have weathered the fighting but then Gavin entered my morning with news that very much pushed me over the edge. Gavin casually approaches me and tells me that he's only got enough tubing for one last IVIG Infusion. I told him that's not possible because as you can see in the image below, there are supplies for 8 complete IVIG Infusions for the month of October. Maybe you can't see that from the image but I confirmed upon delivery, that he was not shorted anything. Gavin should have enough supplies to do 4 more IVIG Infusions this month and he's basically saying that he's missing…

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October 19, 2018

Autism Parenting Insight / My thoughts

Sometimes it’s really hard to remain positive

This has been a rough week for us. Actually, it's been a rough recent history for us. We really, really, really need to chalk up some victories here because moral is getting low. There are some very positive things that have happened recently. The mass in Gavin's arm turned out to be nothing and Lizze's appointment with the Neurological Center for Pain at the Cleveland Clinic went amazingly well (more on that later). Those are big wins but the losses are big as well and they often outnumber the wins. Here's just a few examples of what I'm currently trying to cope with. It looks like we're going to get buried by this homeowners claim for the storm damage. At this point, I can't see how this will work out…

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October 19, 2018

Cleveland Clinic / Lizze / Migraines / My thoughts / Neurological Center for Pain

At the @clevelandclinic Neurological Center for Pain hoping for a miracle

Lizze and I have safely arrived at the Cleveland Clinic's, Neurological Center for Pain. She really scared that they won't be able to help her. She hasn't been in - nor does she want to go on pain medication. She want the pain to stop, not just be masked. We are hoping that she can try a medication called Aimovig. It came out earlier this year and is the very first medication designed specifically for migraines. It's not a medication for something else that used offlable to treat migraines. It's supposed to be a big deal and we're hoping she can try it. She's had the same migraine for close to 7 years now. It never goes away and it only slightly lessens or gets worse. She's desperate for relief…

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October 18, 2018

Cleveland Clinic / Lizze / Migraines / My thoughts / Neurology

My wife is visiting the @clevelandclinic today, desperate for relief from her constant migraines

It's a huge day for Lizze. She's finally getting in to see her new headache specialist at the Cleveland Clinic. Lizze has had the same migraine for roughly the last 6 plus years and it never stops or goes away. She's never responded to medication and they've tried everything, including Botox injections in her forehead, face and back of the neck. It's been years since there's been any new options for the her to try but there are currently new treatments that hold promise for relief. Part of the issue that makes Lizze's case so complicated is that she has Ehlers-Danlos and mild autonomic disfunction. Ehlers-Danlos is a connective tissue disorder and can also effect the cardiovascular system as well. It's believed that her migraines may be related to a…

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October 18, 2018

My thoughts

It’s been an okay-ish day

It's been a relatively okay afternoon. The boys had a good day at school and that's awesome because we don't have a good start to the day. When they got home, I had them put their things away and grab a snack. There wasn't too much fighting or bickering and it was actually kinda quiet. That's almoat never a bad thing. ☺ The boys have therapy again tonight and we'll have to see how that goes. Lizze is sleeping and I'll explain that later..

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October 17, 2018

Autism Parenting Struggles / Gavin / My thoughts

Gavin had a massive emotional breakdown last night

Gavin had a complete emotional breakdown while at therapy last night, it came out of nowhere and it a big one. He was playing basketball with Emmett and while he wasn't doing anything wrong, he also wasn't recognizing that he was playing with someone half his size. I pulled him aside so Dr. Pattie and I could talk to him about it. All we wanted to do was help him understand why Emmett was getting frustrated. That seemed to be the catalyst that broke the flood gates and had him on the floor in the fetal position, borderline hysterical. It appears that Gavin's been carrying a great deal of pain and regret around with him. For whatever reason, he never told us about this and we only learned about it…

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October 17, 2018