Saturday, September 02, 2006
Sheena is on day 3 of starting some very serious drugs to manage her Infantile Spasms. She is on a low dosage, and it will build up over 5 weeks. Today, she refused her 11.30 breastfeed (VERY odd for Sheena who usually loves it), and then she vomitted up her 3pm feed. She then went to sleep at 4pm and has not got up.
We had to sneak into her room to give her her evening dose (which we did after we'd had dinner so we could enjoy a lovely relaxed dinner). I syringed in her medication, and she quietly gulped it down. She did wake up, but I tucked her back into bed, and I am letting her sleep for as long as she needs to. She hasn't made a squeak since. Not sure if she has a bug lurking, or if the new meds have mucked her up.
I have really been caught off-guard now that she has a 'dual diagnosis' of DS and IS. I was feeling pretty in control with the whole DS thing, (apart from her irritability which really had nothing to do with DS). Now that she has another issue with a very real likelihood of serious outcomes, I am trying to absorb what it all entails.
Anyway, life goes on. We went to St Andrews Market, and hung out with the hippies. Bought some lovely organic vegies, and a tie-die bodysuit for Sheena. I will have to post a picture of it later on.
My cycling routine is getting heaps better, and I've cycled 4 times this week. I've also gone running 3 times, and swam as well. It's like old times. It helps that my husband is off work at the moment.