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Laura

My heart really goes out to you, dav - what a terrible thing to happen to a baby. Yes, a feeling of helplessness is awful; I'm sure your supportiveness for Eva is making a difference. Regarding the walker - you could try using a "johnny jump-up" as part of it. (it's a baby thing, check ebay) Can he not learn to walk because of strength in his legs? Have you tried an exersaucer (also known as supersaucer)? That will help in building strength and holding himself upright. I think with a walker a child may learn to propel themself around but it doesn't do much to strenghten their legs. I guess it's all in what the purpose is. Hmm, I may have an old walker buried under the junk in my garage - want me to dig it out and mail it to you? If you are looking for walkers to experiment on, you can usually get some at yard sales for just a few dollars. You can sometimes get exersaucers and jump-ups too, but the exercausers usually run around $15 - $20 at yard sales. Safety 1st makes a good walker with a high back seat and wide sides, so Kai could probably use that without worrying about him hitting his head (although you may have to move the toys on the front part of the tray). I was looking at some of the websites for the LG syndrome, and a couple listed a Ketogenic Diet for children - is he on that yet? The sites said it was a last resort I think.

Dav

His legs aren't terribly weak (but they've never been strong either). The concern is that he won't learn to walk because it's too dangerous for him. He won't get enough practice because he can only try it when someone is holding him and his head up for safety right now. In fact crawling can be dangerous with the atonic seizures.

I'm just thinking that with a walker he can at least have some sort of safe mobility that also encourages him to get used to some sort of upright self propelled movement. I've had two offers for walkers now, so I'll try to pick up a couple of them this week and start experimenting.

The Johnny Jump-Up thing looks like it might have some possibility, but what he really needs is something that can hold his upper buddy upright also (which is why I'm thinking of a torso harness). Eva had bought him a baby life preserver sort of thing hoping that the padding would help protect him during the collapses but it didn't work very well. However I'm thinking I can turn that into the harness.

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