Finally Confirmation

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wishing4agirl's picture
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Finally Confirmation

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.

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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.

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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.

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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.

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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.

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Those are great ideas. Thanks ladies.

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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.

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He really did like the worms that were growing in the planter we were waiting to plant stuff in.

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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.

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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.

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Some cool things he could do (cool in my books) is learn how to identify plants, birds, trees and mammals. You can get all sorts of field guides about this sort of stuff. Along with that you can do animal tracks - everything from foot prints to what different species nests look like, figuring out what the tracks are doing (running, walking, stalking, trotting, hunting. Birds also have bird calls that are specific to species (lots of CDs to learn these), and they are specific to males, females, juveniles, etc... The nice things about these hobbies is that they can be very useful later on if he is interested in this sort of thing, and you can add huge amount of info over a life time. There are all sorts of cool colouring books and kids books about animal tracks and ID too so you could do it in any weather. It could also be something that he "specializes" in compared to the other kids in the family so he has something 'special' that he is good at.

Bugs are also really neat (especially if he is interested), and you can buy an indoor ant colony that you can feed and watch how they live (different types of ants in the colony, workers, etc...)

**Can you tell that I'm an ecologist? These are skills that people just don't get anymore. the average kid can identify over 1000 name brands and maybe 4 trees at age 4. Something is wrong with that to me!**

As for the results of the test, I am so glad that you finally found a doctor who is willing to work with you for Liam. What a relief that you are finally getting some good answers so that you can help him.

Other activities (outdoor), are gardening like you mentionned - perhaps vegetable gardening so there is a reward? Melons are a favourite here! Also, does he like building things? Perhaps little sets (home depot has some) would be cool so he can put together a box, or an airplane or helicopter. Carpentry is a good not super strenuous type of activity that can be both fun and useful.

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I'm thinking maybe birds and flowers. And maybe about gardening in general. We are doing a garden which helps the kids learn to like different foods. Some of which they wouldn't touch store bought. I guess we will be making a library trip.

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Oh, I like the bird bath idea. I was going to suggest a bird feeder and/or hummingbird feeder, but I forgot.

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We do have a bird feeder, but I like the idea of doing a hummingbird feeder too. I've never made the liquid they drink, but I guess there is always a first. We could turn it into learning about hummingbirds and the different types that come to the bird bath or feeder. I know we could get stuff at the thrift store really cheap to make the bath.

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Another thing my kids love to do is play with ice using plastic buckets and shovels. I usually let them do this at the pool/beach when I'm ready to empty the cooler out. They transfer it from one bucket to the next, pretending to cook and make milkshakes. The scooping really helps to improve motor skills too. You could also buy a cheap kitchen set (maybe from a garage sale) to keep out back. We took ours camping and the girls loved making "food" out of dirt, rocks, twigs, etc.

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http://www.amazon.com/s/ref=nb_sb_noss_1?url=search-alias%3Daps&field-keywords=pocket+naturalist+guide

These things are great. We have a Cape Cod-themed one we brought on vacation last year. They're laminated so they're water resistant. You might even be able to give him a white board marker to check off things he sees. He could use them in the wagon on walks, use a backyard sort of one in your backyard. I really like ours. Lots of pictures of lots of neat things to look at. It's only a few pages (it's basically a laminated pamphlet) but it looks like they have them for most states.

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LOL - DSS just got a couple of these for his birthday!!! You can find them at most local nature centres too. Or you can photocopy them!

I like the idea of playing with ice in the summer!

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Maybe I could do one of those ice bucket things where I put toys and stuff inside and they break it apart. The more I think about the camera idea, the more I like how we could it to all the other stuff. He could take pictures of the birds that come to the feeder. I'm not sure he'd be quick enough. But I do think he'd like it anyway and it would slow him down. I'll have to go to the local home curriculum store. They actually have something like those pamphlets.

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wishing4agirl's picture
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Those are perfect Deb!

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We got Madison an inexpensive video camera off amazon.com for Christmas (like $20). It takes still shots as well and she loves it. It works best outdoors where it is brighter. I think that's a great idea for Eli!

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I mentioned all these ideas to everyone that came to Faith's birthday party today (really it was just grandparents, and grandparent type people) and the LOVED them. Now I'll have to see if I can find one at my local stores.

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Playing with ice reminded me that as a kid my Mom would give me a bucket of water and a paintbrush to draw on the sidewalk...and I loved it! I also enjoyed making hand and foot prints and watching them disappear.

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My kids spent 2 hours last weekend making hand/footprints out back! lol