Dylan. Jedi. Breaker of things.

Dylan is 12. He's funny and fun and mostly still sweet. I love him to bits! Dylan is your typical 12 year old boy. He loves all things video games and youtube videos about video games. He LOVES everything Disney and musicals. Hamilton is his jam. He loves to sing. He loves Star Wars and anything Marvel. He loves to have a fire out in the yard, and enjoys camping out there too. He absolutely loves the water, any water, wherever, as long as he's wet. He got that from me. Swimming is his thing for sure, but he'll take a hot bath any day of the week. Showers are another story.  He wants to be a million different things when he grows up.

When Dylan was little he played soccer for a season, did a bit of gymnastics and a bit of karate. He loved to play outside with his friends, especially out in the woods. He loved to ride his bike and spend all day at the pool. He also LOVED to play in the snow. He's such a special kid.

He has ADHD inattentive type, and we suspect high functioning autism. It presents some challenges, but he's just starting a new medication, and he's always risen up.

When he was in 5th grade he sang at his talent show and the was chosen as 1 of 6 kids from his school to join the all county 4th and 5th grade choir. He was so happy! His teachers were shocked to see him come out of his shell! That's when he really discovered his love for singing.

Here he is after singing "We Know The Way" from Moana at the talent show.

And here he is at the choir concert!

Also when Dylan was in 5th grade he started having migraines. They were horrible, awful, knock you on your butt migraines. After a while he started getting severe vertigo with them that felt like falling. Then he started getting dizziness and lightheaded. Soon he was dizzy even without the headaches and he would complain of feeling weak. He was on a beta blocker for Inappropriate sinus tach, like Ali was, and it was controlling the tachycardia pretty well, so he wasn't diagnosed with POTS just yet. However, he was given the same medication she takes to raise his blood pressure and try to deal with the dizziness. It helped for a little while, but soon the dizziness and weakness were a daily occurrence.  Then his tachycardia returned,  along with chronic low blood pressure And volume. We are currently in the middle of a medicine tweak before we switch to trying fluids for him as well because this kid, he does EVERYTHING he's supposed to. He wears compression socks all day every day. He drinks 80 ounces of fluid a day, takes his medication and eats plenty of salt. But nothing seems to be doing the trick.

Of course we're pretty sure Dylan has EDS too, as his joints are so loose and floppy it's actually ridiculous. His pediatrician was actually so concerned that she put him in PT even before he could be diagnosed because his issues were so severe. His right shoulder comes out fairly easily, as does his left knee. He also has a curvature in his spine called lumbar lordosis caused by the unstable joints and loose ligaments of EDS. Dylan deals with pain every day, and it's one of his worst symptoms . The PT has helped him a lot with stability and overall strength, but he still struggles with the pain of EDS.

We're still learning about Dylan's illnesses and they seem to still be evolving, but he's got a great team of doctors and we're pretty experienced!