Tuesday, September 9, 2014

A little sensitive but OK

Reagan slept well last night (in her chair). She woke up this morning slightly sensitive to noises/talking, but otherwise good. She had vision therapy this morning and she actually did pretty well with that. Then her PT came with a couple of reps from Freedom Concepts and she was able to try out the DCP 16 bike! It's really neat and has a lot of options that she was lacking in her old bike! We're trying to go through our PT's company's charity in order to get it, but the majority of people get them through Variety Children's Charity. They are super expensive $3000-$4000, so getting assistance is a must! This is just one example of how expensive everything is for a child with special needs. With a "normal" child, you can just run out and buy a $50 bike...a $200 bike would be considered extravagant! Multiply that by 10 or 20 and that's what they charge for a special needs bike! It's CRAZY!!! Yes, there are a lot more modifications they have to make to these bikes, but it certainly shouldn't cost that much more! And that's how everything is. EVERYTHING is more expensive. Everything is more complicated. Everything takes more time and more energy!!! Everything is work...but this sweet girl is worth every bit of it! This afternoon she had OT and she did OK. Afterward we gave her a nice relaxing bath and she took it easy for a while. Tonight she was still pretty excitable/vocal...I think we narrowly escaped a meltdown! She did have a random bloody nose (in her right nostril)! I guess it could be from the saline and constant nose wiping?? She did finally doze off with the help of clonidine and Daddy laying down with her. Hopefully she'll sleep the night through! 

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