Tuesday, July 26, 2011

The best laid plans..

Last night I went to bed with fantastic plans for today. Kennedy and I were going to drop Molly off at school and then meet up with a good friend to do a little scouting around for an end of summer school project for Molly's class. With 8 kids, all with different allergies & sensitivities, we really can't send in a food treat. And with the rules regarding food anyway.... let's just say I've sent in donuts (by request) masqueraded as breakfast buns, and cupcakes as muffins. I've also done an entire preschool birthday celebration with sugar-free pudding and SNACKWELL cookies. But I digress, we were going to look for an easy tangible craft the kids could take home to remember the summer. Then we were going to get coffee. It was going to be a wonderful and relaxing day.

Instead, Molly woke up at 4am and was in my bed by 5am. There was nothing wrong that I could tell except she seemed agitated and she has a rash. Little red dots spotted her chest, belly and entire back. "Great" I sleepily thought to myself, plans changed again.... By 7:30am, Molly's morning "nap" was over and she was in full agitation mode. If you've never seen this, it's something to behold, and it's the biggest clue I have to something being "off" with her, since she can't tell me. A lot of kids on the autistic spectrum do something called stimming. It's often seen in hand flaps, or hand ringing, or body rocking etc. Molly's stimming, like her cognitive abilities, is much more complex and involved. She talks about a mile a minute weaving complex themes of various stories she's heard or seen while walking in very fast circles or back and forth from her bedroom to the couch. The doctor has actually seen her do this, it can go on for a little as 10 minutes or for hours. The only way I've found to break it, is to give her a tangible electronic distraction (read: Ipad). This will calm her. We haven't seen this stimming in quite a while. We usually see it prior to an illness or when she feels just yucky enough but not full blown sick. This pattern started yesterday, she walked so fast, she fell on the Strawberry Shortcake car...

So, Dr. Mom put the stimming together with the horrible sleep with the rash and made the executive decision to call the actual doctor before taking her to school. We were bounced around from appointment to appointment because they insisted we see Molly's pediatrician, who didn't have an opening until late afternoon.... boo! Molly was not happy to miss school and the trip to the computer lab. She was actually angry with me - she told me so! I diffused the anger with the promise of a trip to Target (I needed bread anyway) where we picked out new nail polish colors for our summer toes. So my new plans took shape.

During all this planning I realized we'd hit that point in the month where the $30 co-pay would have to come from somewhere else. Ever resourceful, I told the girls we were going on a treasure hunt to turn all our coins to dollars. They were very excited to visit the coinstar machine (where we turned our coins into $62!). The girls were so good today - even with the plans sprung on them. We handled the post office, the coinstar machine, and target before coming home. They played, they ate lunch, Kennedy went down for a nap and we pretended Molly's room was a computer lab. We had to leave at 2:30pm to get to the doctor on time. Kennedy woke from her nap on her own, which was odd and then I noticed the very distinct sounds of a swollen windpipe - there is no mistaking the bark of croup. She's not coughing much, but if she starts - it's going to be a long night - and of course the doctor appointment wasn't for her!

We went to the doctor. I do love him, if I haven't said that before! He thinks Molly's rash is brought on by sweat, or wet skin and rubbing of fabrics, but he wasn't sure - it wasn't a clear-cut answer. He agreed to test her for strep (which was negative thankfully!) even though we didn't think that's what it was (she's had just the rash and strep before). I don't think it's just a skin rash, I think it's a viral symptom and Molly and Kennedy are both processing the same cold or virus in different manners. So now, my plans for the rest of the week are up in the air!

The girls were so good at the doctor that when Molly asked for a smoothie, I took our Rita's coupon and agreed to go there. She was very excited to order a mango-smoothie. She was not so excited when I told her it was shower night. Instead of forcing her to shower (which I've had to do before) I made a plan. How about we eat our Rita's, then shower and get in our jammies. Then I would spread a big blanket out and we could have PJ Picnic dinner - She thought this was great! The evening progressed and we are happily finishing up the Strawberry Shortcake Movie with varying degrees of stuffy noses and sleepy faces. Bedtime is soon!

After all this time, I still get sad when plans get changed. It's part of it all. I strongly dislike this waiting stage - waiting to see if their going to get sicker, waiting to see if a seizure is coming, just not knowing.... I can handle things much better when I know what I'm dealing with - the unknown is frightening and full of too many possibilities! My plans changed and developed by the minute today, but when I forced myself to make my errands center around the kid's involvement, the day went pretty well. I hope my brain can keep up for tomorrow's plans!

1 comment:

  1. The unknown and changes of plans are no fun! It sounds like you really made the best of it though- Go Mama!