Can I just say I really hate this, whatever it is!!
JD used to love being an active kid outdoors. We used to hike all the time, go to zoos and so much more. A few weeks before JD got sick, we went on a 6 mile hike up a 3700 foot mountain. He loved every second of it. Pulling himself up rocks, checking out salamanders, birds and other animals. Now he's becoming a hermit! Because it hurts after a limited time of doing anything that requires him to hold his head up, he doesn't want to really go out and do much. He rarely wants to leave his bedroom. He's becoming addicted to video games, and I hate it! I try to pull him out, but finding the "pushing him" and "pushing him too far", is a hard line.
Add to it, he hates the light!! He used to love playing in the sun. Sunny winter days were his favorite. You know the kind, where the ground is covered in so much white it makes the light even brighter! He could spend hours playing out in the snow. I'd be a frozen popsicle. Summers at the beach were his next favorite. Now if the sun is out he cries that it's hurting his eyes! He refuses to open the curtains in his room. He wants to go out and do things only if it's dark. The museum is cool to him, because it's dim and the light isn't bright. But the zoo is getting to be too much.
Not to mention that the poor boy has such a limited diet. Anything that can get pureed is ok, and any drink thickened. But you know what. Not all food is ok to puree, so we have learned! He just wants a cheeseburger, with pickles, tomatoes, lettuce, mustard and ketchup! So he keeps telling me how to make it. And pizza. A real pizza! Things a normal kid should want! But no! His birthday party is this weekend. His awesome snacks for it... PUDDING. Thinking of some for everyone else to also enjoy, but that's why I planned it at non-meal time. He can't even have a real cake, can't have ice cream! He gets pudding and frosting. I do plan on mashing up some of his cake in pudding, but still. You get my point!
It's not fair! Why should my kid have to change what he loves for this. I know JD doesn't have it the worst and I shouldn't complain, but I am upset today. Ok. Rant over. I just need to get that out! Now to go find him a cool pair of shades and hope that helps a little bit! Followed by looking up a few new ideas of cool foods to puree!
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