We finally made it to the Cleveland Clinic
It seems like the world is conspiring to make us late to Gavin's pediatric neurology appointment at the Cleveland Clinic. Here's what's happened..
It seems like the world is conspiring to make us late to Gavin's pediatric neurology appointment at the Cleveland Clinic. Here's what's happened..
Today was another heartbreaking plea to stay home from school. I don't know what to do but here's what happened
I mentioned earlier that we were all excited because Gavin got new tubing for his IVIG Infusions that have historically reduced the infusion times significantly.. Unfortunately, that didn't prove to be the case today. In fact, his infusion took almost 3 hours to complete and that's pretty close to the record for longest infusions I can remember. It was also really uncomfortable for him as well. He did manage to hold up really well but this sorta killed the excitement of the new tubing. It's possible it was just a bad placement of the needles and we'll see how things go on Fridays morning.
You know something? When you're a special needs parent, it's really important to find joy in the little things. It's been a pretty good day today and that's awesome. The highlight of my day thus far was Gavin's new IVIG supplies arriving sorta on time. They should've been here last week but they're here now and that's what matters. The really exciting part is that we received the shorter tubing so we can knock these infusions out in less than 30 minutes. Even at the current time of 2 hours, it just seems to really be a lot for Gavin. If we can get these done in 15 or 20 minutes, that would be awesome for Gavin. 😀 Sometimes it's the little things in life that make the biggest impact.…
After all the drama this morning with Emmett, his shoes and going to school, I really was hoping to walk. Unfortunately, it was raining and I'm not quite that hardcore yet. I've been writing, folding laundry and even had a conference call about a new project I'm working on with my good friend Joel Manzer from Autisable. I've got two baskets of laundry that I would really like to get folded before the boys get home from school today. I'm feeling like that's a pretty reasonable request of myself and I fully intend on completing it. That will be some more progress and a great way to start the week off on the right foot.
This morning was nothing but one gigantic meltdown and I think I already spent my ration of energy for the day. 😫 Emmett was so upset this morning because he had a tummy ache and didn't want to go to school. The reality is that his tummy ache is anxiety because he is so anxious about everything in his life. He genuinely loves school and isn't getting picked on or anything like that. Part of the issue this morning was his shoes and socks. They just didn't feel right and by the time I was able to fix that, we were already 15 minutes late for school. Emmett was also worried because he has to take his shoes off at Martial Arts and putting them back on, isn't something…
I've made the decision to adopt a relatively major change to the way I've been doing things in our house. Starting today, all screens (TV, tablets, laptops etc) will be turned off at 6pm. This rule applies to the boys because I need access to my phone and so have to work but the idea is to end the day without the use of screen time.. The only exception is that Elliott will use his tablet to listen to music at night and Emmett will watch an episode of something on Netflix before falling asleep. The music is a positive thing but I'm hoping to slowly reduce the need of TV at bedtime for Emmett. He really doesn't even watch it, it's essentially background noise and it lights up…
Tonight's posts will have to do with some changes that are coming. The two changes that will be discussed, beginning with this post and ending in the follow up a few hours later, should bring about positive results. In this post, I wanted to share a change that is being made to Gavin's biweekly IVIG infusions that should improve his experience. Let's get everyone caught up. For starters, why is Gavin on IVIG and what does it do? I'd have to look back for the exact date but roughly 4 years ago, it was discovered that for some unknown reason, Gavin's immune system had become permanently and severely compromised. No one has any idea what happened or why but there it is. As a side note, this happened about the…