We were gone for most of the day and it was an exhausting day at that. I want to start by thanking my Mom for helping out with the boys yesterday. We truly appreciate it.
There was a lot of construction on the way to Cleveland but the drive was only about one hour and twenty minutes. The trip home was a bit longer but not too much. There were some idiot drivers out there and one major accident but the trip was relatively smooth. ☺
We were headed to Cleveland in order to meet with Gavin's neurologist, in regards to his autonomic dysfunction.
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There was a great deal discussed and autonomically speaking, he's very happy with Gavin's stability. It's been about three years since his last major crisis and that's a blessing. This is likely the result of pulling Gavin out of school and putting our entire focus on his health/wellbeing. He hasn't had a crisis that required him to be hospitalized since that decision was made.
That's where the good news ends and *things we're going to end up worrying about *begins.
Gavin's specialist at the Cleveland Clinic quite literally wrote the book on autonomic dysfunction. We learned that because he gave us a copy of the newest chapter that addresses some recent changes to how autonomic dysfunction is treated.
For starters, Gavin's daily water intake is increasing by 500 ml/day.
His doctor is also increasing his sodium intake my two grams per day. That amounts to three salt tabs, twice a day, or six grams.
He also thinks Gavin has Ehlers Danlos, which isn't a huge surprise to us at all. We were pretty sure that was the case anyway. It's genetic and Lizze was diagnosed a few years ago. Elliott and Emmett are probably on that same train ride as well.
Apparently, there's a connection between Ehlers Danlos and autonomic dysfunction. I didn't know that, but it's actually part of the updated information about autonomic dysfunction he just finished writing about.
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We discussed the other issues Gavin's been having also.
The blood disorder is not something he deals with and we will continue our current investigatory path in regards to it.
We also talked about his visual disturbances. This isn't referring to the ones related to Schizophrenia but rather the physical issues with his vision.
Apparently, people with Ehlers Danlos can experience this particular symptom. It's not related to migraines or hallucinations. Both of those were things we had considered as possibilities, and they make sense.
He's suspecting the issue may be the lens in Gavin's eye/eyes, may have become dislocated. This isn't something easily detected. He explained that you would have to actually go looking for this in order to find it. That would explain why Gavin's eyes have been checking out as being okay.
We also need to go back for new neuro-psych testing. This was done years ago and he wants to see how much Gavin has either improved, stayed the same or gotten worse. This is the most objective way to accomplish that.
The testing takes about six hours and Gavin had a very difficult time with it last time.
We need to see if there's any deviation from the previously established baseline. This will give a an idea of how to better help him.
Finally, Gavin has to come back for an EEG. This is in regards to his Epilepsy and it will help us gain insight as to whether or not he's still having seizures. He has absence seizures and they are very hard to detect outside of an EEG.
All these things are happening in the near future, especially the thing with his eyes.
I'm not sure if that is something that would require surgery or not. We don't know anything about it but I will be researching later today.
I don't know how to articulate just how overwhelmed I am with everything.
There's been so much that's happened in the last few weeks. The issues with Gavin's blood isn't getting better. We recently had to put our cat down that we'd had for almost thirteen years. Exactly one week after putting Cloe down, Lizze's Dad almost died from a massive heart attack.
We have this trip and many unknown factors surrounding it now.
Everything is weighing on me heavily and my war on Depression isn't going so well for me lately. Depression is definitely kicking my ass right now and there's not a great deal I can do but work on processing everything.
Meds will only take me so far. I need to work through some of these things in order to regain controlling interest in my life.
I'm tired, overwhelmed and have to do this all again today.
