I’m not in a really good place tonight. It’s been an exceptionally long day and I’m not sure how to begin digesting today’s appointment.
This will be brief and you can then check out a few pictures from today.
Basically, we don’t know what’s going on with Gavin’s legs. Neurologically, he checked out, at least in that area. That’s the sorta good news.
What’s next is bad news but not necessarily new bad news.
His neurologist examined Gavin. While he was doing so, we somehow got on the topic of Ehlers-Danlos, how Lizze has it and it’s believed Gavin does as well.
Basically, Gavin’s skin has become extremely elasticy (I don’t know if that’s even a word). It’s sorta like if you’re wearing a pair of loose fitting athletic shorts and you grabbed the shorts with two fingers and pulled them away from your body. That’s sorta like what Gavin’s skin is doing.
This is newer and hasn’t shown up in previous exams. His doctor had never seen Gavin present this way before today and he’s been seen countless times.
Well, it is better to know so the appropriate medical treatment can be used. But still, it’s hard for you and Lizze because you want the best for your children, and illness isn’t something anyone wants. Very sorry.
Gavin also looks like he’s lost quite a bit of weight