The past couple of days have been hard. There have just been a few reminders that Ayden Jane really does have PWS. I know that sounds odd because we have been dealing with it for a year and half now, but Ayden Jane does so great that I almost convince myself we have this thing licked.
I have loved listening to the vastly improved language skills, but the cost has been watching my lively little toddler become way more calm and uncoordinated. I know, logically, that this is just a side effect of the way she seems to develop in spurts, but it is still hard. I have even had to watch her extra closely because her body awareness has seriously slacked off. In fact, while my son was playing with her on the swing set, she took a pretty big fall. He was telling me it was weird when she fell. Like she put her hand back and had no idea where she was and that there was nothing there. She has played on that very same swing set with no problems for months!
Also, all the 'holiday' food reminds me of her food restrictions. Mckenna and I still bake cookies... but we wait for Ayden Jane to go to bed. Food this year has not really been a problem, but I see the challenges on the horizon. I am soooo not a food person, but I will need to learn to make PWS friendly treats. For me, that means treats that are grain free and not loaded with sugar. More to research, learn and create but I know it can be done. I think for now, I will just enjoy this year.
No comments:
Post a Comment