Read more about the article I really need thoughts and prayers today folks
Cleveland Clinic / Gavin / Thoughts and Prayers

I really need thoughts and prayers today folks

It's going to be a really, really busy day.  The boys will be with my Mom for the day, while Gavin and I make our way to the Cleveland Clinic. This appointment is the first of its kind for Gavin and so I'm really nervous. We will be at The Cole Eye Institute for most of the day. We will be with a genetic counselor for awhile before Gavin undergoes some new tests to help determine the cause of some of his health issues.     What they believe he has is something called Jalili syndrome and of course it goes without saying, that this is extremely rare. Gavin never does anything halfway.  lol/sigh We will likely arrive home just in time for the long overdue family therapy session at Dr.…

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August 25, 2015
Read more about the article Prayers Needed: Gavin may have Jalili Syndrome 
Cleveland Clinic / Gavin / Thoughts and Prayers / YouTube Video

Prayers Needed: Gavin may have Jalili Syndrome 

The video below will provide more details but if you just want to know what's going on, here's the deal.  I received a phone call yesterday from The Cole Eye Institute. This is the premier eye center at The Cleveland Clinic. It was a genetics counselor working with one of Gavin's precious doctors.  Gavin's been to The Cole Eye Institute a few times for very detailed exams.  These exams were looking for neurological issues that would hopefully give us a direction to go in. He eye exam was fine but they noted issues with his teeth that we already knew about.  Gavin is lacking enamel on some of his teeth and has had to have metal caps installed as a result.  http://youtu.be/W6OMwtqw99I They took detailed pictures of his teeth as…

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August 22, 2015
Read more about the article Gavin makes his triumphant return to the Cleveland Clinic next week
Cleveland Clinic / Gavin / Rheumatology

Gavin makes his triumphant return to the Cleveland Clinic next week

Something I'm don't know if I've shared before is that Gavin has connective tissue problems. Apparently, his Mom has a connective tissue disorder but that was diagnosed after she left and so I'm relatively in the dark on that. Gavin is extremely hyper flexible. Some of the things he can do are actually cringe worthy and hard to watch.  I've known about that forever and that's one reason why he was in OT/PT and is currently back on the waiting list.     The problem he's been having recently is that his shoulders and hips pop out. It's very painful and just sorta happens randomly. He could be running around and be just fine but he could have his shoulder or hip pop out while climbing out of bed in the…

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August 10, 2015