Gavin’s labs have come back

Gavin's labs have finally come in and it's better than bad news. His Absolute Neutrophil is up to 2.8 from 2.4 last week. This is good news because the numbers are moving in the right direction. At the same time, we still have no idea what's going on. We're still waiting to get into Hematology because this is the best chance we have to identify what's going on and how we can address it. I feel a sense of relief at he moment because his members are good right now and will probably be good for the next couple of days. I can't let my guard down because we have learned over time, that with Gavin, what goes up must come down. It's like we're waiting for the proverbial other…

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Gavin’s not doing well tonight

I waited all day and the lab results never came in. I spoke with the doctors office a few times and they have assured me that they will email me the results as soon as they get them. Being the overprotective, borderline paranoid parent I am, I continued to follow-up until they closed. Unfortunately, that didn't get me anywhere but frustrated. I know in my head that waiting until tomorrow isn't the end of the world but when Gavin goes to bed not doing well, it's like pouring gasoline on my worry fire. I'll be following up in the morning and hopefully find some answers. I'm pretty fucking stressed out but I'm managing.. ☺

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So far so good

All I can say is so far so good. Gavin's bloodwork is done and we're just waiting on the results. He got to spend time with his grandparents, which is awesome for all involved. I was able to get some work done, as evidenced by having written a few times already today. ☺ I'm working on the house and on the site today. As soon as Gavin got home, we setup his IVIG infusion and it's going good. He seems like he's in a better place today and I'm happy to see this. All I have left today is picking the kids up from school and getting Elliott to occupational therapy. I'm hoping to grab some sweet pictures of Elliott's session today and I'll share them later on. I have…

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Surprise Surprise

The wait for Gavin to have is bloodwork done about one hour and fifteen minutes. At about the one hour mark, Lizze parents showed up and took over waiting. They had texted me about hanging out with Gavin this morning and wanted to come pick him up from the lab. I was able to head home and they were able to spend some time with Gavin. That's a win win in my book. Now we simply have to wait for the results of his labs. This is the part I'm dreading. As many of you know, I hate when the only thing left to do is hurry up and wait.

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The perfect morning

We're off to a good start this morning. Both Elliott and Emmett got dressed and ready for school with very little difficulty. We got to school on time, which is always a great way to start the week. ☺ At present, I'm waiting for Gavin to come out from having his bloodwork done. It's probably going to be a longer wait because they look super busy. That's okay because Gavin has the patience of a Saint and I have a few things to do. If I had to script the perfect morning, this would probably be it. Let's hope his lab results are good news and the rest of the day follows the same trend. ☺

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Just a day in the life of a Special Needs parent

The goal for this morning is to get the kids to school on time and if I'm lucky, in a good mood. ☺ Immediately after that, I have to run Gavin across town for what will end up consuming the rest of my day. That's right, he needs his Monday morning bloodwork again. This is how we are monitoring whatever is going on with his blood. Here's how this will go down. Gavin will get his bloodwork done about 8:30-ish AM. From that point on, my anxiety will be through the roof because I'll be awaiting the results of his labs. The results will tell us how our week is going to go. If they're bad again, the focus will be on figuring out what, if anything we can do.…

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Is Sensory Processing Disorder controlling our lives?

Sensory processing disorder sometimes seems to be controlling our lives. It really is something that has an impact on so many daily functions, and unless you're living with or loving someone with this struggle, it's very difficult to understand. In my house, all three of our kids face these daily struggles. Their brains are hardwired differently and they do not perceive sensory input correctly. This leads to frustration, being overwhelmed, anxiety, meltdowns and yes, even physical pain. Truth be told, we gave up on a balanced diet a long time ago and now focus on calories. While sensory processing disorder (SPD) impacts many areas, but the most challenging for me as a parent, revolves around eating food. The most profoundly impacted are Elliott and Emmett, so I'm focusing here for…

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I’m so excited for occupational therapy today

It's been quite a bit of time since his last session, but Elliott returns to occupational therapy Monday afternoon. His last appointment was before we left for Florida and because he's been sick or the therapist was out, we just haven't connected. At this point, all signs are go for his return and it couldn't come soon enough. He desperately needs occupational therapy. He needs the physical outlet, strength training and coordination building that goes on at this fabulous therapy session. Even better, he doesn't have to miss any school for this either. I'll pick him up after school, drop Emmett off at home and head to Akron Children's Hospital for his 45 minute session. It's been about 2 month since his last session so I fully expect him to…

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