new neurologist

Monday June 30, 2014

Aaron had his appointment with his new neuro today. She was a little concerned about his level of consciousness. She wrote us a script for labs (to check levels of Vimpat and Keppra) and another EEG. We will get his labs done Wed morning before Tae's aqua therapy and his EEG is scheduled for July 11th. We talked about his meds making him very sleepy and the fact that he does not sleep very well at night. I usually try and schedule all of his appointments before 10 am but I couldn't get an early appointment this time.

I am so tired of getting additional referrals and appointments. I am exhausted and just want to have a little break from all of these appointments and new issues. Today I am feeling defeated. I want to just pick up and go on a family vacation on the spur of the moment. I don't want to plan and plan and make sure I have enough meds, formula, feeding tubes, syringes, ER rescue meds, Drs numbers, extra feeding pump, suction machine, a list of the closest hospitals.....I want my kids to experience all of the fun things and make all of the great family memories....tomorrow will be better...my kids are happy and we have made lots of memories together as a family. As always I will continue to plan and plan so we can go as a family. Just a trip to the zoo I pack so much stuff it looks like we will be gone for a few days. But with my kiddos I never know...
Even with all of the extra planning it ends up being all worth it!