Saturday, February 3, 2018

Dr. Miller Visit

We headed south for our annual visit to Dr. Miller. It is always great to see her and let her squeeze Ayden Jane and chat with her and let us know where things look great and where we can make improvements. I knew this year we went into the holidays looking fantastic and was hoping to skip the winter slump. The flu messed with all of those plans, but at least Dr. Miller felt she still looked good. We definitely need to work on her core a bit, and I'm wondering if there will be anything to show up in the labs we just drew this week.

Ayden Jane seems a little off to me. I am not quite sure how to explain what I mean. Things like a little tired. Reduced exercise tolerance. Talking a big game and wanting to do things but just not being able to get motivated to get out the door and do them.

Bump in gh? Thyroid finally failing? She is sort of doomed there. 2 of my typical kids are hypothyroid and, of course, PWS raises that risk significantly. Vitamin D? Iron? So many things to keep track of.

We also decided to increase her Pitolisant dose slightly. Hopefully there will be some good results from that. In large part, it has just been a pain to cut the pill into quarters and I feel like it leads to dosing that is not consistent and a bit of loss. Today was day 2 which typically is rough. I'm not sure why, but in the past on day 2 Ayden Jane is usually quite tired, has a headache and is grumpy! So far today, it has not been bad so I'll take it! She did take a nap for about an hour and a half and recognized that she was tired and did not want to even try to run. Tomorrow, day 3, should be the rest of the adjustment and hopefully she will rock school on Monday.

Posting about my poor parenting effecting school tomorrow.


No comments:

Post a Comment