Gavin had his appointment with the neurologist this morning.  I suppose,  the silver lining is that Gavin’s in good spirits.  That’s where the good news ends and the scary crap begins. The neurologist is think that Gavin may have Marfan Syndrome. That doesn’t have anything to do with anything we were there but it’s something we have had in the back of our minds.

Marfan syndrome is a genetic,  connective tissue disorder. This is something we have been concerned about for a long time. Gavin’s biological fathers side of the family has a history a aortic tears at a very young age. This is why we have been back and forth to the cardiologist. Gavin has been having chest pain for years but that seems to possible be reflux and not cardiac related.

The cardiologist sees him every year to track his heart and main arteries.

Anyway,  while the neurologist was examining Gavin,  he said “wow,  these are some Marfan hands if I’ve ever seen them”.

I didn’t realize what he was talking about at first. We thought he was goofing around but he was actually very serious. He asked us if Gavin has ever been tested and we said no.  We explained that have brought this up a few times with the cardiologist and was always kinda shut down.

He explained that Gavin has the outward symptoms,  unusually tall,  fingers and hands are extremely long and almost out of proportion for his body. I think his skin is overly elastic as well. 

While Gavin isn’t extremely tall,  he is taller than both Lizze and his biological father,  so I guess maybe that counts. I’m not sure what to think about that because it was brought to our attention and we never had to say anything. In fact,  with everything else he has going on,  I had forgotten about this.

Right now the plan is as follows:

He has a 48 hour VEEG beginning on Monday and ending on Wednesday. We’ll hopefully, have a better understanding of what he has going on in the seizure department.

On May 3rd, Gavin will be back to the geneticist,  this time they will do something like chromosomal array scan or something.  They’re gonna check for something like 2,000 genetic disorders.  This will also,  hopefully,  provide us with some much needed information about what he has going on and possible treatment options.

On May 4th, we will be returning to the Cleveland Clinic. This time we’ll be headed the Dysautonomia Clinic.

Hopefully,  all of this craziness will bring about answers,  answers that we desperately need and have been seeking for many,  many years.

For now,  I’m going to focus on Gavin being in good spirits…..  That’s pretty much all I have right now….

**Thanks for reading**

       -Lost and Tired

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Posted from WordPress for Android so please forgive any typos as auto-correct and I don’t see eye to eye. 🙂