Every single day, I lose more of my son and it hurts beyond words


When it comes to his joints, rheumatology is where we need to start. His joints hurt and slip out of place almost every day. I don’t know what can be done but maybe some degree of pain management is possible.

Hematology is important because Gavin has strange things happening within his blood. He randomly suffers from Neutrophilia. His Absolute Neutrophil count will get dangerously low, as we don’t know why. His platelet count can also get low for unknown reasons as well.

This further complicates his immune issues and it needs to be investigated.

NeuroPsych will be doing testing to help us keep track of how far and fast he’s regressing. This needs to be done every few years to help establish baselines and to gain a better idea of where he’s at.

Genetics is pretty straight forward. We need to gain some insight into some of his health issues because depending on what we learn, can directly impact how we manage them.

Gastroenterology needs to help with the weightloss and other intestinal issues.

This is a lot to take on, especially when we’re already so overwhelmed as it is. We have to figure out how far to take this as well. We don’t want him put through anymore than is absolutely necessary. At this point, the most invasive test is likely to be bloodwork.

I don’t know how we’re going to pull these appointments off because we’re already stretched thin both physically and financially. Our car is on its last leg and these doctors are about one hour and twenty minutes away.

Here’s the thing, there isn’t much we can do for him in regards to most of these issues. At the same time, we owe it to him to do whatever we can.

I need to know that when all is said and done, regardless of whatever happens, I did absolutely everything I possibly could to help him. I have to be able to do that. Maybe this is selfish on some level but it’s how I feel.

Watching your child waste away, knowing that for the most part, you are absolutely powerless, is something that thankfully, most parents will never have to experience. It’s beyond words or at least my ability to find them.

This is where I am right now. Life just won’t slow down and let face one thing at a time. Lizze, Elliott and Emmett are each facing things right now that in their own way, is equally tragic.

…………that’s all I have for now. As I said when I started this, I was going to stop when I needed to. I need to stop.

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BeckyW

I am so sorry Rob.

Rg74

A truly heart breaking time for you all im sure,I wish you all nothing but the best for the future.

LTJ

I’m so very sorry, Rob. Truly.

Lisa Blycker

Rob, I’m so sorry for all that you and your family are going through. I wish I had words to comfort… https://t.co/yCTCbNwRb8

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