Ehlers Danlos Archives - Page 97 of 101

He seems better today but time will tell

I slept like the dead last night. The boys got off to school and Lizze is at her Tuesday morning appointment. When she's done and there's a break in the weather, I'm going to try and go walking. At the moment, I'm finding all kinds of reasons not to go but I know I need to go anyway. At first glance, Gavin seems to be doing okay-ish. He's currently sleeping off his morning meds but the brief encounters I've had with him thus far have been better than yesterday. There's sort of a status quo when it comes to Gavin. It will change from time to time as his regression and health issues worsen. Whenever the dust settles, there's usually a new status quo. We seem to have returned to…

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September 25, 2018

Gavin / My thoughts

It’s heartbreaking to see him like this

Gavin's IVIG infusion supplies arrived but didn't arrive until dinner time. I had Gavin immediately put his infusion together and get it going. While he was doing so, he began getting upset for the weirdest reason. Out of nowhere, he kept insisting that he never said there were missing supplies and definitely didn't say anything about 3 needle sets missing. This was a WTF kinda moment for us because I haven't a clue why he said this or why he was so upset. This was weird for a couple of reasons. The first reason was that he's the one who told us that he was missing supplies last week and told us he was missing 3 needle sets. Why he would even bring it up and then deny having said…

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September 24, 2018

Autism Parenting Insight / Inspirational Posts / My thoughts

It may not be pretty or graceful but we will survive

Life is a never-ending series of tests and I'm currently being tested. As an Autism and Special Needs parent, I'm no stranger to challenge and have become accustomed to the daily struggle that many Autism and Special Needs parents face. Being accustomed to something shouldn't be confused with becoming easier. We've (Lizze and me) have been knee deep in managing Gavin's physical and emotional health problems. They are never-ending, frequently changing and can often be a fulltime job, in and of themselves. As we're working through those issues we're also trying to make the necessary preparations in order to file for permanent guardianship of our newly minted 18-year-old son. Lizze is experiencing changes in her overall health and health care that makes things more challenging right now. Elliott appears to…

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September 24, 2018

Gavin / IVIG Infusion / My thoughts

I’m not really angry because I screwed up

It's Monday and that means Gavin should be receiving his IVIG infusion. In fact, it should have already been done. Unfortunately, we're still missing supplies. I talked about this last week and explained the somewhat angry phone call I got from the person who is in charge of making sure Gavin gets his supplies. I've been assured that they will arrive today sometime but beyond that, there are no specifics. I'm sure they will arrive and aside from throwing off his schedule, there's no harm in waiting until later today to do his infusion. I'm not angry or really upset because we didn't check this particular delivery. I wasn't here when it showed up and it sorta fell through the cracks. If I had checked it, I would have known…

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September 24, 2018

My thoughts

Hell no that didn’t stop me

I had a hard time sleeping last night. Lizze says I was snoring pretty bad, but that's actually uncommon for me but it does happen from time to time. I was stuffy and that always makes it challenging for me to fall asleep. Lizze is adjusting to her recent change in medications and so she's struggling with sleep a bit as well. She got the boys ready and I took them to school, before getting my 3 miles in for the day. The only part of me that wanted to walk was the part of me who wants to see me hit my goal of 80 miles this month. I'm almost there and I need every day I can to see this through to the end. Unfortunately, within the first…

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September 24, 2018

My thoughts

Sometimes surviving is a monumental victory

We survived another challenging day. I ended up having to run some errands this afternoon and so we didn't make it to the park. I don't think anyone really wanted to go, so no one was hugely disappointed. Elliott struggled this afternoon. It's hard to explain what exactly he goes through but they seem like sorta extreme reactions to ordinary things. I know he has Autism. I know he has ADHD and anxiety. I also know that he's almost a teenager as well. What we're seeing is more than that and it's one of the reasons we're seeking help from Akron Children's Hospital. Between the actual testing and twelve years of observation, Dr. Pattie is concerned that we may be looking at bipolar disorder. There are no clear-cut edges here…

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September 24, 2018

Autism Parenting Insight / My thoughts

Trying to reduce the stress in our house is not easy

Today is a totally blah kinda day. We are in a weird place at the moment and that's creating some unneeded stress for everyone. The boys (meaning Elliott and Emmett) are very stressed out over the enormous tree in our yard and are worried that more of the tree is going to fall. This has them on edge, which influences their behavior and mood. I want to get them out of the house today and away from what's stressing them out. It's a really nice first full day of Fall and a trip to the park could be a great way to spend the afternoon. Unfortunately, Lizze is not doing so well today either and her migraine is limiting her movements right now. Anything that we go and do this…

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September 23, 2018

Autism Parenting Insight / Elliott / Emmett John / Gavin / My thoughts

The heartbreaking reality of parenting an adult child

Being a parent isn't easy. I don't think anyone would argue that statement. Being a special needs parents it's without a doubt, the most difficult endeavor of my entire life. We are facing a very difficult reality right now with our oldest, Gavin. Gavin's going to be 19 in a few months and we're still adjusting to him being an adult. My goodness, does that make me feel old. I've been raising Gavin as my own since he was about 15 months old. I legally adopted him many years ago and that was a moment I will never forget. I'll always look back on the day we went to court to make things final, as a blessing and a truly amazing experience. My personal journey with Gavin has brought me…

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September 23, 2018