Cold outside....burrrrrrrr.......

Busy day today. I had to take the scale that we use to measure Kaden's formula to get it checked and it turned out it was off just a little bit. They fixed that and then off to the hospital to meet with the dietitian to go over how to measure his formula with the scale. Then we had a play, butt change, oxygen therapy on butt, another butt change, more playing, and then off to sleep, more playing and then a feed......I had to leave today at 3:30 to get back for Elle and he was still awake....I hate leaving him while he is awake...:( His Phenobarbital blood level today was 40. They did a ketone blood level which was 5 and that is very good. Shows that his body is in a ketotic state and that is where we want him. His urine ketones still only show between 4 & 8 but that isn't bad. His blood sugar however is low therefore we have to change his feeds to 5 times a day. He was on 4 times and that worked much better in that the afternoon was a bit more flexible for going out but I guess my kids don't want us to have a life.....I should be use to that by now!!! Guess I will just have to do some tube feeding while shopping!!!! OH!! He also enjoyed the music therapist this afternoon. She came and sang to him for awhile...it was so cute cause he was smiling at her looking at her out of the corner of his eyes.....flirting with her......He was awake tonight and had a few visitors.....Angel one of the nurses from PSCU. She took care of Elle in PSCU (and Kaden) when she was there for 9 months.....we think she is the greatest!!! She really is an angel. Jackie on of the nurses aids brought him a bag of goodies....she is a real sweet heart. She has given Elle blankets and stuff before. Its nice to have those kind of people in our lives.

Elle had a good sleep last night so she was wake and ready for school today. She did nap at school but nothing major. Was in her walker in gym class. Elle had a visit with her Auntie Lori tonight. Auntie Lori just got over a cold and was missing her Elle.