As you may have noticed there is a theme to all my photos.  I am always laying down on my side because that way keeps the saliva from building up in my back of my throat since I still can't swallow.  I get very nervous and the seizures start-up if Mommy and Daddy put me on my back so I am only in that position when absolutely necessary!  I do like to lay on my tummy sometimes too but I can't always tolerate my feedings that way.

I am usually not being held either because it is so hard for Mommy and Daddy to suction me and give me my medicines when they have to hold me too.  Lots of movement makes me upset too which brings on the seizures so I am most comfortable snuggling on the couch or in my bassinet.  I do like to snuggle every once in a while but whoever I'm snuggling with must be prepared to "camp out" for a while:-)

I had a very busy day today with my nurse Tiffany.  First I met my new night nurse Heather who came to meet me and and learn the ropes.  Heather will be working Wednesday and Sunday nights so Mommy can get sleep before they have to go to work.  Then my hospice nurse Lynda showed up and weighed me - I am a whopping 15 pounds and 1.5 ounces!  That is almost half a pound heavier than my last weigh in.

My Brother spent the day at his friend Owen's house and he was wiped out when he got home!  We all had dinner (I'm still finishing mine) and are getting ready for bed.  We just spoke with Dr. Gien and we decided to up my Valium dose since I'm still having seizure episodes that are requiring morphine.  The goal is to not need morphine every day so we will give my new Valium dose a go this weekend and see if I stop having these seizure break throughs....