This is why we have to watch Gavin so closely around food

Gavin's not feeling so well. It began last night with him overeating at the cookout. Gavin has never been one with a functional ability to self-regulate. As an example, he doesn't ever really feel full when he eats. What happens is he will eat too much and end up making himself sick. He's been doing better over the last few years because we've been trying to create habits for him to help compensate for what his brain doesn't do correctly on its own. Unfortunately, we still have times where Gavin will eat and eat and eat, until he makes himself sick. Last night was a perfect example. When we're at home, it's much easier to monitor what he eats but when we're somewhere else, it's much more challenging. We dropped…


The last time we were here, we received devastating news

Today is going to be one of the biggest days we've had in awhile, at least as far as Gavin and his health are concerned. Gavin finally gets back into Gastroenterology. We've finally come full circle and I'll explain why. It's been awhile since he's been seen and that's only because we were basically overrun with unrelated, but life-threatening health issues that took priority. Gastroenterology was actually what began a huge part of our journey. We made it to one appointment and within a week of that appointment, the Gastroenterologist called, telling us we needed to get Gavin into Immunology immediately. In fact he'd already made the appointment for us. He's the one who discovered Gavin's severely compromised immune system. From there it was a diagnosis of Common Variable Immunodeficiency.…


It’s likely nothing to worry about but there are two much more serious possibilities that he’s genetically tied to

I still haven't heard from the doctor as to what time Emmett's supposed to be seen in the morning. I'm supposed to call back if I don't hear from them before 9 AM. This should be a simple appointment and likely resulting in a referral to Gastroenterology at Akron Children's Hospital. The most important thing at this moment is ensuring that there are no life threats or serious issues that need to be addressed. I don't think there are but we want to error on the side of caution because what parent wouldn't. Once we get to that point, we will likely get an appointment with Gastroenterology at Akron Children's Hospital. There are a couple things that we are going to need to rule out, and they are more serious…


There’s a lot to process after her appointment today

We just got home from our trip to the Cleveland Clinic. The kids are picked up and ready to go to Lizze's parents for the night. Lizze and I are both exhausted, and looking forward to a nap when the boys leave.  As far as Lizze's appointment goes, there are some major changes she has to make to her life. Most of those changes are dietary, but she's also permanently placed on a low dose antibiotic.  She's got a great deal to process right now and will probably share all the details on her blog, when she's ready. If not, I'll be sure to keep you updated as best I can. 


Waiting for answers at the @clevelandclinic 

Lizze and I made it to Cleveland, with a bit of time to spare. We did that despite some asshole almost crashing into us as he tried to pass us on the single lane in ramp.  Aside from that, traffic wasn't too bad, and we had a nice conversation.  I'm waiting for Lizze to get out of her appointment. We're hoping that we can manage her nausea, at the very least. There's no cure for gastroparesis, and according to the gastric empty study she had done, roughly fifty percent of what she eats, remains in her stomach, long after her stomach should have emptied.  It's classified as severe.  There's no life threatening anything involved here, but quality of life is severely impacted. 


The important reason we are heading to the @clevelandclinic today

The reason we are going to the Cleveland Clinic today, is so that Lizze can see her gastroenterologist. This is a belated follow-up appointment, in regards to being diagnosed with gastroparesis.  Gastroparesis is basically a slow stomach. That means food stays in her stomach for much longer than it should, and causes a number of problems.  This is why Lizze is nauseous all the time.  We're hoping to find some treatments that help her to get some relief. Unfortunately, there's no cure for this and treatment is limited to diet changes, but there are some medication options.  Lizze will probably put more information on her blog, and you can find that here.  


Yesterday was such a rough day and here’s why

We survived another challenging day and by the time you read this, I'll be doing my damndest to get the boys to school on time.  This should keep you busy for now. Yesterday was especially tough for Lizze cause she wasn't feeling good all day. Lizze tends to get sick after eating and has for a very long time. We had always assumed it was due to stress or something like that. As it turns out, she has something called gastroparesis and it's actually quite unpleasant. Her doctor was concerned about her always feeling nauseated after eating and had her undergo a procedure. In this procedure, they fed Lizze scrambled eggs, laced with radioactive marker or something. She ate the eggs and they would measure how far along she was…