We had a great weekend celebrating Ali's birthday. We had dinner at Waffle House because that's her favorite, and then Sweet Frog, obviously. Then we went to the mall where the girls got matching build-a-bear puppies with BTS recordings in them because apparently you're never too old for a new stuffed animal. It was a great weekend!
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Monday we went back to real life, and all the stress that comes with it. Eric left for Louisiana, I went back to supermom duty, and Dylan went back to school. On his way to his 3rd core, he bent over to pick something up and heard a pop in his back. He said it hurt very badly, but he stuck it out and made it through the day. He was in a lot of pain when he got home, but I made him go to PT, hoping they could help. His therapist said she thinks he dislocated a rib or two and that they slid back in over the course of the day. His pain eased with some exercises she did with him, but it was a rough afternoon.
He has also been struggling with leg pain. Dylan's ankles are so hypermobile that while standing upright and without bending his leg, he can roll his ankle all the way to touching the ground, both ways. It literally looks like his ankle is broken when it happens. His ankles hurt all the time, but so do his calves, and we aren't exactly sure why. Partially we think it's blood pooling due to his POTS. He wears compression socks, but we got him some new ones yesterday and are hoping for some improvement. We also got him some ankle braces to hopefully help for now. Today he woke up and just was in so much pain. It is so hard when it's your kid who is in pain and you know there isn't really anything you can do but give them some Motrin and move on. Add to that dealing with his POTS symptoms and trying to survive 6th grade, and it makes for some pretty heavy stuff. 12 is hard, y'all.
Maybe that's why today has been so hard for me, knowing that he's struggling and I can't fix it. I'm a fixer, a doer. My life is a carefully organized disaster. I take care of everything, and I don't know how to take care of this. And maybe it's because everything is just kind of looming over me. The next 2 and a half weeks hold 8 appointments for the kids. That doesn't include infusion days. Several of those appointments are in Durham or Chapel Hill, and the one that really has me nervous is the Genetics appointment. The more I think about it the more nervous I get. I am supposed to get as much family medical history as possible, especially on my dad's side, and the more I gather, the more I'm sure that we will get Dylan a diagnosis. I'm nervous as to what exactly that will be, and what will come next, though. We know he has a connective tissue disorder, probably Ehlers-Danlos syndrome, we just don't know what type, and that is a very important distinction. We are anxious for some insight on what else we can do to get him to a better place physically, and what we can do to make his life easier and help him be as successful as possible. We'll do whatever it takes.
As for me? I'm honestly ready for a vacation. Summer can't come quickly enough! 6 weeks. Just 6 more weeks. 33 school days. 5 more Mondays. We can do this.
I hope you guys have had a better day than me. Here's to a better tomorrow!
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