As I read the New Year posts around social media and thought back on 2017 I realized it was a pretty amazing year.
At the start of 2017 Ayden Jane was not on pitolisant and the ability to import it from Germany was just being worked out. I knew we were headed to see Dr. Miller for our annual visit and had plans to ask her about starting Ayden Jane because we were in a rough place as far as being able to get through her day. She was struggling the second part of the day at school with focus and just being able to stay awake. She would either fall asleep after school or push through and be in bed by 6 in the evening. Just getting enough functioning hours to do school and a bit of exercise was a huge challenge.
We made it through the process, started Pitolisant, increased dose gradually and learned all we could along the way. Much of that is logged well here through last spring.
Then there was the brief hospital stay with pneumonia that came on fast and furious. So thankful to have amazing ER docs here that have taken the time to get to know Ayden Jane and are now on high alert for her.
Summer came and a wonderful family vacation to Busch Gardens.
I finished on job started a new one.
Gary had his wrist reconstructed and it is rehabbed and doing great.
Kayla has figured out what she wants to do and hopefully acceptance to grad school will soon follow. She also was able to return to Honduras for a couple months and spend a week in El Salvador.
Noah has officially completed his undergrad degree and begun his graduate work.
Mckenna is rocking school, had a great spring HS soccer season and fall club season. She has done very well and enjoyed her music, both singing and learning piano. Her drawing has been so fun to see come pouring out. So much in that kid who knows where she will end up in life, although she is already narrowing down her college choices.
At the start of 2017 Ayden Jane was not on pitolisant and the ability to import it from Germany was just being worked out. I knew we were headed to see Dr. Miller for our annual visit and had plans to ask her about starting Ayden Jane because we were in a rough place as far as being able to get through her day. She was struggling the second part of the day at school with focus and just being able to stay awake. She would either fall asleep after school or push through and be in bed by 6 in the evening. Just getting enough functioning hours to do school and a bit of exercise was a huge challenge.
We made it through the process, started Pitolisant, increased dose gradually and learned all we could along the way. Much of that is logged well here through last spring.
Then there was the brief hospital stay with pneumonia that came on fast and furious. So thankful to have amazing ER docs here that have taken the time to get to know Ayden Jane and are now on high alert for her.
Summer came and a wonderful family vacation to Busch Gardens.
I finished on job started a new one.
Gary had his wrist reconstructed and it is rehabbed and doing great.
Kayla has figured out what she wants to do and hopefully acceptance to grad school will soon follow. She also was able to return to Honduras for a couple months and spend a week in El Salvador.
Noah has officially completed his undergrad degree and begun his graduate work.
Mckenna is rocking school, had a great spring HS soccer season and fall club season. She has done very well and enjoyed her music, both singing and learning piano. Her drawing has been so fun to see come pouring out. So much in that kid who knows where she will end up in life, although she is already narrowing down her college choices.
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