Yesterday compared to today was a big change. If it keeps going at this rate it's going to get wild around here.
Yesterday, Mrs. M said Ayden Jane was a little sluggish. I saw the same at home. Not full on tired, not falling asleep, just processing a little slow and struggling a little. I don't know how else to describe it. She did a lot, school, swim team, shopped, homework, walked dogs... She wanted to do all of it but at the same time you could see the effort in it all. There was some anxiety, which always comes with tired.
Today? I do not know how school went but since I have been with her - starting at 4 ish - she has been on FIRE. She did an awesome job picking out new glasses. She was cracking up the ladies there helping her. She was decisive about what she liked and did not like. She was delightful.
After glasses we joined up with Gary and Mckenna and grabbed a bite to eat. She was so animated. So much laughter. So much joy. All of that and she was on her way to supper so you would think she would be slowing down.
After a burger and veggies we headed home to knock out homework, walk the dogs, wash the dogs and take a shower. There is NO WAY all of those things could possibly have been done in one night before Pitolisant. Not only did she accomplish the list of things she wanted to, she did it all with ease. It is currently 9:00 and she is still firing quickly. As we were nearly home from our walk Ayden Jane stopped to tie her shoe. Being the good mom I am, I just kept walking and figured she'd catch up and knew her way home anyway. I got down the road a bit and I heard footsteps. They were the footsteps of Ayden Jane running. I didn't even turn around because I loved the sound. It was different. Her steps were quicker and lighter and even and.... sounded like a kid who ran easily. After she caught up she said, "mom, Pitolisant makes me way faster. Hey, can we start running this week? I want to do that bouncy race coming up! I bet I can run the whole way with no problem.... "
I am honestly a little nervous about tomorrow. I think that sometimes, on P, she has felt so great one day that she over does it and the next day she is tired. Or maybe she is sort of over energized that she doesn't sleep well? I don't know, it's just a pattern that has seemed to surface. I am hoping that it will all even out over time. I have a feeling my quick increase is partly to blame. I think Pitolisant needed to really settle in and she needed more time to adjust at each dose. I guess that is part of what we are doing. Looking for benefits and side effects and knowledge for dosing.
What I do know for sure is that today was great. The hope that days like today will string together and become the new normal is amazing. Of course, only time will tell... patience, patience. Prayers of thanksgiving tonight for a great day and a glimpse of what may be to come. Prayers for little Ayden Jane as she walks through this all and rides the ups and downs of all sorts of things going on inside.
Yesterday, Mrs. M said Ayden Jane was a little sluggish. I saw the same at home. Not full on tired, not falling asleep, just processing a little slow and struggling a little. I don't know how else to describe it. She did a lot, school, swim team, shopped, homework, walked dogs... She wanted to do all of it but at the same time you could see the effort in it all. There was some anxiety, which always comes with tired.
Today? I do not know how school went but since I have been with her - starting at 4 ish - she has been on FIRE. She did an awesome job picking out new glasses. She was cracking up the ladies there helping her. She was decisive about what she liked and did not like. She was delightful.
After glasses we joined up with Gary and Mckenna and grabbed a bite to eat. She was so animated. So much laughter. So much joy. All of that and she was on her way to supper so you would think she would be slowing down.
After a burger and veggies we headed home to knock out homework, walk the dogs, wash the dogs and take a shower. There is NO WAY all of those things could possibly have been done in one night before Pitolisant. Not only did she accomplish the list of things she wanted to, she did it all with ease. It is currently 9:00 and she is still firing quickly. As we were nearly home from our walk Ayden Jane stopped to tie her shoe. Being the good mom I am, I just kept walking and figured she'd catch up and knew her way home anyway. I got down the road a bit and I heard footsteps. They were the footsteps of Ayden Jane running. I didn't even turn around because I loved the sound. It was different. Her steps were quicker and lighter and even and.... sounded like a kid who ran easily. After she caught up she said, "mom, Pitolisant makes me way faster. Hey, can we start running this week? I want to do that bouncy race coming up! I bet I can run the whole way with no problem.... "
I am honestly a little nervous about tomorrow. I think that sometimes, on P, she has felt so great one day that she over does it and the next day she is tired. Or maybe she is sort of over energized that she doesn't sleep well? I don't know, it's just a pattern that has seemed to surface. I am hoping that it will all even out over time. I have a feeling my quick increase is partly to blame. I think Pitolisant needed to really settle in and she needed more time to adjust at each dose. I guess that is part of what we are doing. Looking for benefits and side effects and knowledge for dosing.
What I do know for sure is that today was great. The hope that days like today will string together and become the new normal is amazing. Of course, only time will tell... patience, patience. Prayers of thanksgiving tonight for a great day and a glimpse of what may be to come. Prayers for little Ayden Jane as she walks through this all and rides the ups and downs of all sorts of things going on inside.
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