Sunday, January 7, 2018


It may not seem like a huge deal depending on where you live, but most all kids in the south dream of the white stuff. Here, in coastal SC, it seems every 8-10 years we get a few inches of snow. Typically, the snow lasts about a day and then the temps rise right back to normal and it all melts away. This year, not so much. It has been a deep freeze here and the several inches of snow which fell on top of the layer of sleet and freezing rain have lasted for days!

Ayden Jane was so excited. She made a snowman, had a snowball fight and Gary even took her sledding! It was a golf course hill but when you live on the coastal plain, you find a hill where ever you can. There were other kids there and she had a blast. Only one near mishap when she was headed straight for the slightly frozen pond and apparently bailed off her sled just in the nick of time. The sled went out onto the ice then floated the ice on the other edge. Oh, did I mention her 'sled' was a boogie board? That's how beach kids sled.

Kayla and Mckenna were awesome and wandered the neighborhood through the snow and threw snowballs with her. Noah was less than impressed now that he has spent a few winters in the north.

So, here we are after just over 3 full weeks off school. No routine, a week of flu, Christmas excitement, snow and frigid temps... so many days of indoor activity. She/we are not used to this!!

She has learned to stay up late and sleep in. A skill I appreciate in the summer but I think it is going to be a rude awakening when she heads back to school on Tuesday. (schools out again tomorrow) It's cool that with Pitolisant the days of the 4, 5, even 6 AM wake up are gone!! At the same time, letting her get into the habit of sleeping in may not have been my best choice. It was wonderful for me though.

I will make an appointment to meet with her teachers this week. There are a few things we need to tweak from last semester. I was so spoiled last year with the bond Ayden Jane had with her teacher and the way her teacher just 'got her'. Not sure we will ever have that awesome a situation again, but I need to get my act in gear and help get the rest of this year back on track.

Tuesday, January 2, 2018

Happy New Year

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.