Sunday, May 27, 2018


Last weekend Ayden Jane and I traveled to Houston to meet up with a few of the families that are also taking Pitolisant. Well, the point to the weekend was to meet with Drs. at Texas Children's Hospital to discuss pediatric narcolepsy and Pitolisant and PWS and better characterizing sleep in PWS.

Ayden Jane and I ended up flying in too late to actually meet with any of the doctors as the agenda switched a bit after our tickets were purchased but Ayden Jane had a wonderful time hanging out with her friends.

It was interesting to see how relaxing it was for her to be around kids who operate in her realm, so to speak. They have similar food rules, the have a little slower processing so Ayden Jane is never left behind. They all accept each other for exactly who they are. They totally get it that each one is being the best person they can be and that sometimes it's just hard.

I had a great time watching the kids run around, play hide-n-seek and just enjoy being together. No pressure. Ayden Jane was firing well for most of the weekend. She did crash a bit while we were at the airport. She really wanted to hang out with J for a little while before our plane took off but AJ was really just not much fun. After we said goodbye I finally got smart and found her some caffeine and poof! She was right back on track and just in the nick of time! We got on the plane and then it was delayed... yep, we had to sit and wait a while and if she hadn't rebounded so well it was going to be a long, long wait. She did beautifully. Pulled out a sticker book and dressed the movie stars in outfits and was GREAT.

We returned late Sunday night and I was tired as well but we both got up Monday morning and went about our days.

I need to spend the summer getting her lots of opportunity to hang out with kids. Being a youngest by so many years and having such awesome big siblings, she spends a lot of time with "adults". We pulled her from school and she has been spending even less time with kids her age not to mention that she started acting a bit crazy from all the stress before we pulled her.

I'm out in a couple weeks. Noah comes home. Summer camps and beach/pool days begin. Hoping it is a wonderful summer! 

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