Okay so, we had the 5 day VEEG (turned into 4 days). And it did confirm what we thought it was. The oxygen does NOT get to Eli's brain when and after he has done any normal amount of activity. It is because of his Subclavian Steal Syndrome. This is VERY rare. I actually don't know any other children with this. She even said (as we have too) "this is an old person thing". She does NOT know what is next because the cause in old people is somewhat different. Eli's was related to his original heart surgery although it did not begin actually until his stroke during his 2009 heart surgery, if that makes sense. In old people it is because the vessel they used to correct his orginal heart problem get clogged. In Eli that vessel no longer exists so they can't just go unclog it so to speak. She is having to talk to some adult drs and his cardio because this isn't her realm of expertise. But she did make it sound like he might have to have some sort of surgery. I'm NOT going to count my chickens before they hatch. I'm honestly just glad this dr took the time to truly evaluate and confirm a positive diagnosis and is starting somewhere at least of what direction we should go. She also explained his stroke (which I already knew but didn't fully understand some things). She explained his extremely high risk for stroke and additional brain damage. She also talked about the neurological issues he has and that they are directly related to his heart surgeries. I'm so glad I went to this dr. And even if it doesn't get corrected now, I'm glad I can at least have answers and plan out activities better so that Eli can participate without hurting himself.
Thank you ladies for the support. You all are so wonderful.
Wow. That's a lot to handle. I hope they can do something to help him out. It must be scary to know that your child might be hurting himself just by doing normal child activity.
I think that's what always made us go kind of crazy in a way. We didn't want to completely stop him because we were always told "no that couldn't be it". Now that we have medical proof we know we really need too. Now we need to figure out the balance of allowing him to play, but not restricting him so much he can't function. When it rains we are okay because he pretty much stays inside and plays dress up, plays with Faith's dolls, games, colors, watches movies, etc. (a lot of activities that don't require a ton of energy). When it's nice out and they can go out is a whole other story.
Also ANY suggestions for slower outside activities I can use to distract him please feel free to post them. It was suggested on FB to let him help me garden and does really seem to get into that.
How old is he again?
How about a wagon that you can take him on rides around the neighborhood?
Bubble blowing? (We have a machine that blows the bubbles for you, and all of the kids love it.)
A tire swing. He can be pushed instead of pushing himself, so he gets the feeling of movement without too much exertion.
If he has the motor skills for it, my kids love to play with Beyblade outside (either in a cardboard flat or a Beyblade stadium.
Sidewalk chalk is a great activity that requires little effort.
A wading pool with some small sail boats and squirt toys.
A sand box or sand table, or a water table.
My girls love sidewalk chalk too and can spend hours making crazy creations outside. We also have a small wading pool they play in with a few plastic toys/dolls/etc. They really think it is cool to eat popsicles in the pool, lol. Strange as it may seem they love to sweep the concrete too. They have a child-size broom that they take turns using and that can keep them busy for an hour or more, especially if I bring the radio out for them to get silly with. Alana loves to hula-hoop and I swear she barely moves and keeps that thing going round and round, lol.
Those are great ideas. Thanks ladies.
I like the broom idea. If you got a small broom and dustpan, he could sit down and sweep. You could buy some colored sand or something like that for him to sweep. Or you could separate fruit loops into colors to crush, crush some dried leaves, bread crumbs, etc.
My kids also love to watch ants or dig for bugs/worms.
He really did like the worms that were growing in the planter we were waiting to plant stuff in.
I love the idea of the chalk. If you leave some crumbs out you can also make the bugs more interesting - watching ants move food keeps my kids occupied for a while. Depending on where he is with other skills he could use a digital camera to make a photo journal sort of thing or write down notes or whatever. Even Sam, who can write, loves it when we turn the camera over for a while.
Unfortunately he's really delayed for his age 5 1/2 and will be 6 in July (which sorry I didn't answer earlier). I think we need to get a book about bugs and/or birds, etc. I think he'd like seeing if he could find the picture to match what he finds. I also thought about making a bird bath. I think he'd really like making sure it has water in it. I got him and Faith watering cans for Easter and he liked helping water the plants after we planted them.