So, Ayden Jane had the b12 shot a week ago. this week was a busy one and she handled it beautifully. She continued to sleep later in the morning which was nice. She had art camp in the mornings from 9-12 each day and enjoyed that. We finished out her last couple swim team practices of the year on Monday and Wednesday and she went to a wild and wacky evening program at a local church from 6-8:30.
A couple of the nights she was wound up from the fun and just kept on going until after 10. I sure wish we had received the shot before we went to camp a couple weeks ago. She was just happy and easy about everything.
Mckenna noted how happy Ayden Jane seemed. Ayden Jane told me she can sit and rest quietly without falling asleep. I think the hand rubbing thing and constant talking were often to keep her awake and alert.
I am frustrated with myself for waiting so long to try it. I mean, we did/do so many things to give Ayden Jane's little body the best amount of energy it can summon. Over the years the little boosts from all the different things added up to keep her running well. A simple once a month shot would have been nothing to add to the craziness. Lab values don't show a need and she still had a big response to it. Weird.
It is all a good reminder that I want to continue to look for things to power Ayden Jane. That 'doing well' is awesome, but it doesn't mean we stop the pursuit of doing her best. So many little things will change in this process of Pitolisant and growth and learning. She has come so far and we discover new surprises every week.
Soon we go on an actual family vacation. My big kids have made it clear that we have deprived them of such their entire lives. Mind you, we live at the beach and they have had a pretty great life. So here's to Busch Garden's Williamsburg and the water park! I think she will have the energy to wear us all out.
A couple of the nights she was wound up from the fun and just kept on going until after 10. I sure wish we had received the shot before we went to camp a couple weeks ago. She was just happy and easy about everything.
Mckenna noted how happy Ayden Jane seemed. Ayden Jane told me she can sit and rest quietly without falling asleep. I think the hand rubbing thing and constant talking were often to keep her awake and alert.
I am frustrated with myself for waiting so long to try it. I mean, we did/do so many things to give Ayden Jane's little body the best amount of energy it can summon. Over the years the little boosts from all the different things added up to keep her running well. A simple once a month shot would have been nothing to add to the craziness. Lab values don't show a need and she still had a big response to it. Weird.
It is all a good reminder that I want to continue to look for things to power Ayden Jane. That 'doing well' is awesome, but it doesn't mean we stop the pursuit of doing her best. So many little things will change in this process of Pitolisant and growth and learning. She has come so far and we discover new surprises every week.
Soon we go on an actual family vacation. My big kids have made it clear that we have deprived them of such their entire lives. Mind you, we live at the beach and they have had a pretty great life. So here's to Busch Garden's Williamsburg and the water park! I think she will have the energy to wear us all out.
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