Back to Normal...whatever normal is

The past several days have been about recovering and quality family time (I was trying to ignore the rest of the world for as long as possible).  The events of the past couple of weeks left us frazzled and weary.  I am still processing everything and will certainly blog about it later.  But this week everyone started back to our normal schedule with school and activities, including Brayden.

Brayden is doing well, almost like you would never know what his body went through.  We are all adjusting to the two new tubes, new gear and adjusting medications.  Getting him ready in the morning and in the evening seems to take longer as we get comfortable with the new things.

We just keep adding to his list of things to do/have.

Just some of the things he needs at night time.

Brayden seems to be adjusting to the new medications without any side effects or drowsiness.  I tend to push back a little with the seizures medications because I do not like for him to be too drugged up.  Thankfully, Brayden's neurologist is on the same page.  For his seizure meds, he is on Keppra, we increased the dose of Lamictal, added Phenobarbital and Diamox (Acetazolemide).

Amazingly Brayden is handling it all very well.  He has been smiling and chatting (like little lion roars and his happy noises).

Easter we spent the day, just the five of us.  Brayden could not have been happier.  Oh how this makes my heart jump for joy to see him smile.