There's so much to catch you all up on and frankly, some of it is too difficult to talk about. I've tried writing this several times now and very quickly find myself entirely too overwhelmed to actually finish anything.
Rather than giving up, I've decided to write what I can, stop when it's become too much and publish it, regardless of how it sounds. As a result, this may sound a bit choppy or jumbled but that's because it's not easy to even think about this stuff, let alone write about it.
Deep breath......
Gavin stepped onto the scale today and has lost more weight. He barely weighed 119 lbs, fully dressed and already having eaten breakfast. That's at least a one pound loss since yesterday and it's worrisome.
Lizze and I are under no illusions as to the severity of Gavin's physical and emotional health problems. They're not good and neither is the long term prognosis. Childhood Disintegrative Disorder is an absolutely devastating condition and the outcome is never good. We know this. We almost never talk about it but there isn't a day that goes by where we are forced to face this incrediblely painful reality.
Gavin has struggled for most of his young life but as time moves forward, those struggles become more and more severe.
His body and mind betray him in ever increasing ways. His memory fails. His body doesn't respond to his will. His joints, muscles and bones hurt. Thinking becomes harder and harder for him with each passing day.
This video talks about Childhood Disintegrative Disorder.
We have a new round of specialist appointments beginning on September 4th.
I know going into this, there nothing that can fix whatever is causing these things to happen. I harbor no illusions and live very much grounded in reality. It's not about giving up hope, it's about self-preservation. There's only so much we can do and openly admitting that is soul crushing for me.
The purpose of these upcoming appointments is more about quality of life than anything else.
If we can find ways to help him with his pain, that would be a truly amazing feat. It doesn't fundamentally change anything but providing him with comfort is undeniably important and the very least we can do.
We also need to figure out what, if anything is wrong with his legs and we'll hopefully begin that process on Tuesday. It makes sense to first rule out any of his neurological issues as being the culprit and go from there.
Also on the list of upcoming appointments, you'll find rheumatology, hematology, neuropsych, genetics, gastroenterology and wherever we are sent from there.
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.
