More notes, and why it isn't fair

After a pretty non-eventful week (minus a bit more fatigue than normal) we had stomach problems again, to the point where my daughter made several trips to the office and finally came home. She had some diarrhea at school (although I don't think she told them) but didn't have any once coming back.

She took a long soak in the tub, rested a bit, and had a snack. By 4 she was fine again.

Sometimes I just don't know how to deal with this. I guess I just keep doing the best I can.

Other things of interest...

After her bath I noticed several areas where her skin was getting really dry. We broke out the lotion Santa left in her stocking and she has been applying it over and over and over again ever since. LOL I am thinking I need to make a little kit for her to take to school, one with a small lotion, her favorite anti-itch stick, and maybe some sunscreen. I'm sure I'll think of some other goodies to go in it too, like maybe some crackers to try when her tummy hurts. I'll keep thinking about it a bit longer before trying to actually put it together. I guess I should mention that she gets really upset when her body is dry, itchy, or sore. So having those things around might help, although it might be distracting as well. I suppose I'll ask her teacher what she thinks.

I spoke with our genetics nurse today and she is sending a medical note for the school. I'm excited to get that, even if it's just for our files. I also let her know about Ehlers-Danlos Syndrome being featured on Medical Mysteries, which I have an air date as Jan. 24th.

Another thing we have coming up is a visit with Keith, our "ring doctor". He's actually an OT in the Rehabilitation Specialties clinic at the University Hospital. My daughter just adores him and is looking forward to going. A couple of our rings aren't fitting, another one is loosing it's form, and today we might have lost one. (hopefully it shows back up) We seem to be keeping true to visiting him every two months for a ring or two. Not too bad!

On a final note still no Occupational Therapy this week, unless they come on a different day from usual. I'm disappointed, as I really think we need to be getting started on trying out different assistive technology. My daughter is plenty smart enough to be doing the same work as her peers, and it is frustrating to have to settle for her to do less because her hands can't keep up with her brain. While I don't mind that for a period of time, we are now more than halfway through the year and I am growing impatient. I know the IEP was just written in December and I need to give it time. But it's so hard when I know it's going to take time to even try out the technology, let alone find a computer-type machine that she really takes to. Then getting her used to it and deciding what work can be done on it... Etc. I feel like even if we found the perfect machine tomorrow it would still take until the end of this school year to really start getting the benefit from it.

I hate whining, but I guess I'm just in one of those moods. You know, the kind where you just want everything done yesterday and you're not in a position to make any of it happen yourself today, tomorrow, or even next year. I hate being at other people's mercy when I know there are things that could help her now, if only there were the time and resources.

It just isn't fair.