And the answer is....

Pityriasis Rosea. That's what Sarah has. It was finally diagnosed by a doc who knew what it was at first glance. Hooray for that. There is no known cause, maybe viral, but not contagious. It can last weeks and then it disappears. There is no treatment. It may be itchy. She is covered with it everywhere, except for her face, lower legs and forearms.
So other than occasional antihistamine and skin moisturizer, I am ignoring it and we are going on about our days. I can say it was very stressful not knowing what the heck was going on and trying all sorts of things to get to the source. Very weird.
Today was in the 70s here in Massachusetts. It was a glorious day for theraputic riding and then a meal at the local seafood place. She had haddock, scallops and french fries-followed by rootbeer. Then home for a bath, hair wash and bed. A nice, full day for Sarah.
We have an interesting development in the TV department. Sarah started out as a very little girl only interested in watching 3 or 4 DVDs. She watched them over and over and over and over. They were Kidsongs DVDs. She never was interested in anything on TV. Only gradually over the years could I add a new music DVD. And even then she would only watch a bit of it before tuning it out. Maybe a few months later she would increase the minutes of the new DVD until finally she would watch the whole thing. It took a loooong time to add new DVDs to her collection, as you can imagine. She needed repetition, repetition.
Well, within the past 6 months, I have noticed that a couple of things are of interest to her on TV. New things THAT SHE HAS NEVER SEEN BEFORE. The first one is Teen Mom. She loves that show. She really enjoys listening to the girls talk about their troubles, and if you listen to the show, there is music often playing in the background. So we watch that and sometimes I tape an episode for her to watch later. The second new thing she is interested in is Nick Jr. I can get her up, plop her in front of the TV with that station on and she will watch whatever is on while I make her breakfast. This is huge! Everything on that station is new to her and she likes it! I pretty much cannot believe it. She had come such a long way and I am so happy for her. This development opens up a whole new world.

Between this and the Ipad, I am surprised her brain is not on overload, but it isn't! She's taking it all in. In this photo, taken today, Sarah is sitting in her Convaid Scout. The footrests are flipped up because I just got her off a horse. I love, love this chair. I got the thicker comfort seat rather that the canvas sling seat that it comes with and it makes all the difference. The larger wheels give a smoother ride and the tilt of the seat keeps her pelvis tucked back, rather than her sliding forward, off the seat.  It has hand brakes too which is nice. I just wanted to share what I am using these days to cart her around.

The end.

No matter

No matter what I do, what medication I give her, what creams I put on it, or where I put her to sleep-nothing I do matters to this rash. It is doing whatever it wants, whenever it wants, however it wants.

Dermatologist appointment in one week. Until then, I experiment and pretty much drive myself crazy. Part of me is tempted to say " oh well, she has a rash, so what, big deal" and get on with my fun and fascinating life. Ha!

Not gonna happen. It just bothers me. So she's sleeping in with me now to see if the new memory foam mattress on her bed is the problem. So far, no improvement. Of course not!

When I peruse Google for images of various rashes, what she has most closely resembles hives. They look like hives. However, hives generally move around, come and go, usually each hive only lasting 24 hours in one spot. Her spots stay right where they are until they finally flatten (takes days) and fade away, leaving a faint light brown mark until that also eventually fades.

My suggestion to you is, that if you are sick of reading about this rash, then ignore this site for at least a month because this is what's on my OCD mind and I'm going to go round and round about it until it's over. Sorry about that.

Over. That's the goal I am aiming for. All over and back to normalcy around here.

I just had a thought. The one thing we haven't tried yet is an antibiotic......OK, I'm going to shut up now.

You're welcome.

Rash Rant

What is up with this rash she has?  It was just about gone and then it exploded all over again. She is having a fit because it seems like I am putting one cream or another on her all the time. And now there are so many areas, she actually gets cold from the cream. I really am at my wits end right about now. The only places it isn't are her face, arms and lower legs.
So I dragged her to the pediatrician again this cold, windy Sunday morning. I had forgotten that  I had only a tiny amount of gas in the car, but figured I'd stop on my way there. Well, that station was closed and there were no more on the way to the doctor's. I practically panicked thinking of us running out of gas with Sarah sick (yes, she caught my cold).
We made it and saw the on-call doc. She thinks it's a fungus and put Sarah on Diflucan(a pill you take once a week for 3 weeks). I have to stop the 2 creams I was using and start a different one. Oh, happy day! If it's not improved in the next week, then off to the dermatologist we go. It should be all over her face by then, I'm thinking...
And my cold, she does have it, but not as bad as I have it. I wondered why that happened until I was brushing her teeth last night and it hurt her when I brushed the lower right side. I got my trusty flashlight out and peered in, and low and behold, a huge canker there. The virus went to a canker instead of the full-blown cold. The poor kid: a rash (does it hurt, itch? who knows?), a cold and a sore canker.

::sigh::

To be continued.

Almost Spring

Sarah has a new Ipad. She loves it. Her hand use is not that great as she usually grabs for the right edge of it, rather than hitting the middle of the screen. I see her intention to go for the screen but those fingers of hers extend over to the edge. So between reading her eye gaze and redirecting her fingers, we are making progress. The most interesting thing is the way she leans in toward the screen with her little round spectacles on, almost nose to screen, and examines every inch of the display. I think, with the way the Ipad is lit, she can really see the images. Much better than what she sees on paper. And the girl is looking. And studying. It's wonderful. Her brain is getting information that she has never had access to before, through her eyes.

Sarah's new bed is here! It has been an adjustment for all, but I knew that would happen. The bottom line is, she cannot fall out. She is safe. Both side railings can flip down, which is a good thing, being that the bed is a full size and I have to go to the opposite side from where I put her in to pull her to the center of the bed. She's been very good about the change.

Sarah has had a mysterious rash that started on her belly. A wound culture was done that showed nothing. I gave her an antihistamine to see if that would help. Nope. So I am left with applying creams. Two of them. Twice a day for each. One to cover a bacterial rash and one to cover a fungal rash. One of them is working because the rash is ever-so-slowly starting to fade and has stopped spreading. Weird.

The boys are good, both working and making their way through their 20s. Both happy and very busy. I am looking forward to a trip to DC to see Jimmy soon. I don't travel much because Sarah's care must be arranged to the very last detail while I am gone. It's a little nerve-wracking to say the least, for me. But I'm going for it this time!

Look at this beauty!

This is Wilawan, from Thailand. She is one of my Compassion Kids. She sent me this photo of herself, dancing at her recent Christmas celebration. Her letters are chatty and she draws lovely pictures. I would say, that between all 6 children, I receive about 2 letters a week. I have become the mailman stalker! Ha! The kids are great. They live with much poverty but are so hopeful.

Right now, I am sick with a head cold and fever. This is day 4. I am a crazy person trying to keep Sarah germ-free. This kind of bug would be a nightmare for her. So there are gloves, masks and lots of alcohol on paper towels. Not to mention all the antibacterial hand wash. Today the windows are going to be flung open and the wild wind outside can blow through this place. Will all this work? Not sure, but worth a try.

So that's my update, more to come.