I've had a very busy afternoon of scheduling doctors appointments for Gavin. I bounced back and forth between Akron Children's Hospital and The Cleveland Clinic for what seemed like an eternity.
After all the calls, I only ended up with one appointment so far.
On September 4th, Gavin will return to his neurology specialist at The Cleveland Clinic. Normally Gavin goes there for his autonomic disorder and epilepsy but this time around is different.
Gavin has been telling us that his legs aren't working right.
We haven't been able to get more reliable information out of him but it sounds like his legs are giving out. We haven't seen him fall but it seems like he's having issues with his legs supporting his weight.
That's a problem. We don't know what's behind it but neurology is the place to start. They're tentatively referring to this as *bilateral instability. *
I've been in touch with his pediatricians office to discuss his diarrhea. The doctor is out today but I should hear back tomorrow.
It's been about 5 weeks now and while we were told it was better long ago, Gavin didn't want to be on the BRAT Diet, so he decided not to tell us the truth.
He's now under 120 lbs and that's the lowest he's been in many years.
I spoke with the gastro nurse at Akron Children's Hospital and she's speaking with the doctor. She's going to figure out what we need to do and how soon we need to be seen.
She also figured out why Gavin's script for Ensure wasn't filled. It was sent to the wrong pharmacy. It's got to go through the same place that Gavin's IVIG supplies come through.
I was trying to get him in to rheumatology as well. Apparently he can't be seen at Akron Children's Hospital because he's a new patient and over the age of 18. That means we will be adding that to The Cleveland Clinic column. I still have to work that out but I'm exhausted right now.
The reason for rheumatology is because he needs his Ehlers-Danlos officially diagnosed. He struggles daily with very loose joints. His hips, shoulders, knees and elbows pop all the time. His joints pop out of socket and it's very painful.
Rheumatology is the right place to begin for this kind of problem.
I'm waiting on several calls before we can proceed with scheduling a new appointment.
My brain is completely fried and I need a freaking nap. I'm really nervous because Gavin seems to be literally falling apart.
