Gavin hit a major milestone on his journey to independence

Today, I'm thrilled to share a milestone achievement in my autistic son, Gavin's journey toward independence—a journey marked by resilience and quiet strength. At 24 years old, Gavin faces challenges that many of us can barely fathom. Diagnosed with Common Variable Immune Deficiency (CVID), his immune system is severely compromised, which means he's highly susceptible to infections that his body struggles to fight off. To manage this condition, Gavin has adopted a rigorous medical routine that involves self-administering a crucial medication through two small needles directly into his abdomen, not once, but twice every week. The procedure itself is daunting and time-consuming, at times taking several hours each session. It's a testament to Gavin's fortitude that he has managed these infusions on his own for many years, enduring the discomfort…

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This was once my worst fear

It’s hard to believe that we’ve been dealing with COVID for almost 3 years now. So much has changed during this time. COVID has become a part of everyday life that it’s even been incorporated into our favorite TV shows as well. I’m still not used to that one. LOL If you’ve been reading for a while, you know how hard I worked to shield the boys and I from the pandemic. Gavin is immunocompromised, Elliott has asthma, and even though Emmett and I don’t have anything that really puts us at greater risk, we still didn’t want it. Elliott ended up testing positive earlier this year and that was our first bout with COVID in our house. Everyone else managed to avoid it at the time. Fast forward to…

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Fantastic news

In the spirit of trying to get back into writing more, I wanted to share some positive news tonight. First and foremost, the best thing that happened today is that Gavin's IVIG Infusion went well. I think that he will probably feel little more confident on Monday and perhaps he'll be able to get through his infusion a bit easier. Great job Gavin. In other Gavin news, his birthday present that wasn't supposed to arrive until next month, showed up today. He was super excited and now he only has one more item currently in shipping. It's something for him to look forward to. Elliott and Emmett are both caught up and current in regards to school. That's so amazing and I'm so proud of them. I know how difficult…

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I’m getting divorced: What I’m grateful for and few other updates

The boys are still sleeping and Gavin's IVIG Infusion is going. The only noise I hear at the moment is the filter in the aquarium because the tank needs water added. It sounds like a water fall but not the calm, relaxing kind. It's super annoying and I will dump some water in when I'm done with this. After the inauguration, I just sorta crashed. Trump, COVID and my divorce, I have had me extremely stressed out and the last few days have been one long exhale. I figure there's no time like to present to get you an overdue update and so here I am. As I mentioned, the boys are still asleep. It's a no school day and I'm letting them sleep. Frankly, aside from the fish tank,…

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This isn’t supposed to happen

It's Gavin's 21st birthday and we were off to a good start. His IVIG Infusion supplies showed up and he immediately went to work. Whenever he gets his supplies, I've taught him to put together kits containing everything he needs for each infusion. This serves a dual purpose. It helps him to learn how to organize, maintain and keep track of these life saving supplies. The other thing it does is help to streamline the infusion process as well as helps him to take inventory when the supplies are first received. It's important to take this inventory because sometimes items are missing and he needs to let me know immediately so I can get them ordered. This morning he put his kits together and he had enough supplies for eight…

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A fun little update

It's been an interesting weekend thus far. The boys came home yesterday from a visit with their Mom. They all had a great time and I'm so glad we were able to get this safely worked out. There was some transition challenges but it's a small price to pay for everyone to get a chance to be together. We managed to get through all those challenges and have settled into Gavin's birthday weekend. He turns 21 on Monday and while I'm in disbelief at the amount of time that has passed, it's an amazing moment. We're going to spread out the celebration over the next few days. We had his birthday dinner tonight, which was his favorite Chinese takeout. I had talked it over with the boys and they decided…

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Some of Gavin’s labs are coming in and they’re still very concerning

It's been an emotionally exhausting day. I spent most of today trying to keep myself focused on the things I have control over. Unfortunately, there's a great deal that I have no control over and that sucks. I was very consumed with waiting on Gavin's lab results to come back from yesterday's repeat lab work. You can read the back story here. About 10 am this morning, part of the results came back and unfortunately, they haven't improved. I'm still waiting for the results containing his immunoglobulin levels because that's the big one. It stands to reason that we're likely looking at those results very concerning results being verified. As it stands, we are looking at another day before we get those results back and I can't explain just how…

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I heard back from Gavin’s immunologist

I heard from Gavin's doctor this afternoon and I'm not surprised by the approach we're taking. Basically, Gavin's labs are messed up enough that we need to verify their accuracy. The plan is to redo his labs on Monday. The results will trickle in either that day or the following. If everything is fine, then we can breathe. If these come back the same, I'm not sure what we're going to do. If the results are confirmed, it would appear that there is something potentially very serious going on with Gavin. Until we figure out what is happening, I'm assuming the worst. Normally, I would not do that, or at least try not to do that. In this particular case, assuming the results are correct will require me to take…

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