At 12:oo noon yesterday we arrived at Strong hospital and met with the Ketogenic dietician. Kelly is a wonderful and very informed lady! For the first couple days in Strong Will is only allowed to drink specific (carb free sugar free) flavored waters and Ketogenic eggnogs for meals. The eggnog is made with egg substitute, cream, and vanilla flavoring. William drank it down with no problems. I was very concerned that he would get upset when not allowed to eat his regular meals.... he loves to eat!! So far though he has been wonderful.....such a trooper. I have been trying to keep him distracted. We took a long walk through the kids floor, down to get my favorite Jamacian-me-crazy coffee, and to the gift shop. I treated him to a bright colored and shaggy monkey toy that screams when hugged.
He had to have blood drawn last night and at 6am this morning; not the best way to wake up. The nurses here are wonderful but had to stick him several times and then dig the needle around for each blood draw. I am just about ready to go get my lady Mrs. L from our regular lab on Monroe Ave and insist that she do the dirty work. She never has to stick him more than once....she has skill; especially since William's veins are so tiny.
So after being stuck with needles at 6 am Will and I snuggled up and he fell right back to sleep. Mommy on the other hand can't sleep well with screaming babies in the background and bright lights. So, I am up jonesing for my coffee and Will is sound asleep. I plan to let him sleep as long as possible.
want to know more about the Ketogenic diet?? Follow this link...
Does he go off his meds on the first day? How are his seizures yesterday and today?
ReplyDeleteAt least you don't have to drive around in this snow this week! haha!
hey, I just got back on facebook for the first time in days...glad I noticed that you are starting. I'm only 25 ish minutes away, so if you need a runner or errand helper let me know. Liz Kulp:)
ReplyDeleteThanks for the update! Thinking of you always :)
ReplyDelete