Tuesday, April 17, 2018

Camp Out and Spring Break

The week before spring break, Ayden Jane's school did a 4th grade camp out. The kids spent arrived at the state park early on Wednesday, spent the night and stayed Thursday until time for school to end. They had lots of activities and learning and fun. Ayden Jane really enjoyed Wednesday - I was not there for most of it - and we slept in a tent Wednesday night. That was hard on her. She did not sleep much and Thursday we ended up going home a bit early because she was DONE. Just tired and not having fun so no reason to push through. 

I received good reports on how she did through the day on Wednesday and enjoyed chatting with a teacher that helped with her class. I was told that Ayden Jane was well behaved and made great connections. The teacher even said she was smart and she liked how Ayden Jane's brain works. So fun when there are people that "get" her and appreciate how she thinks.

The camp out rolled us pretty much right into a road trip for spring break. It was a whirl wind trip with stops in Asheville for hiking and visiting water falls, Chicago to see many friends and to visit with Noah. On the return trip we swung by Indianapolis for a very quick visit with more friends who are part of our PWS family. 

Overall, Ayden Jane did well. The hiking was tough, but she did enjoy most of it. Spending the night in multiple homes, a hotel, lots of car travel. Not typically a great plan for kids with PWS but she rolled with it pretty well. She did get tired which causes over emotional and snacky. That's never fun. 

On this side of the trip, we are settling back into a routine. She is definitely 'mushy' and her core need lots of work from the winter and travel. Her weight is not good. Her sleep is still not back to where it should be. So, what do I do? Make a PLAN.

First up, we are going back to horses. It's just so great for her and we have had a long break. Next, the pool and ocean are beginning to warm up so there will be lots of swimming and boogie boarding in our near future. I am working on a running plan with motivators along the way. And finally, I am going to bump up her Pitolisant on Friday. It typically comes with a bit of weight gain, but at this point we may as well just add that to what we are already working on. Hopefully, the bump with help her get her sleep schedule back on track and maybe give her a bit more daytime stamina. 

We shall see!