We're hanging in there. But, I'm totally spent.
Nonny, Nonna, Kamden, Justin, Liz, (kristin came yesterday) and the Fenton family were among our visitors. The Fenton's definitely broke up the monotony of the day for us! They showed up with a gift bag of "Luau" toys and accessories for us. Our room is now decorated as the Hawaiian vacation destination we were dreaming of! It definitely brightened things up around here. They are the sweetest family in the world. They are our "kindred" spirits in that they have already traveled the road of raising a special needs child. They are so loving and unselfish...and just genuinely good people with constant words of encouragement.
Kendall is doing alright. She was able to eat a 25 calorie snack of sugar free Jello and cream. The spoon was different from the ones she's used to, so Nonny fed it to her with her finger! Whatever works.
Liz and I did a cheer for Kendall to poop. It worked.
Now she's asleep on Daddy's lap. She's fighting us on eating. Dr. Malik said the first step usually involves being lethargic...and in the second step she'd be cranky.
Our morning medicine routine is currently:
Folic Acid 40.5mg
Aspirin 40.5 mg
Miralax 1/4 cap
She's on a 4:1 ratio of fat to protein and carbs combined
She takes 4 oz of KetoCal 6 times a day
Gets her sugars tested 4 times a day
Ketones/blood in urine, etc... every diaper change.
Hopefully she will begin to exchange some KetoCal feeds for the recipes we've made for her. Hopefully soon. I'm afraid she's going to be over the KetoCal before too long.
So that's it for now. There's a chance we may get to go home tomorrow since she's doing so well Her seizures are still there, but its not like I expected it to work right away. One day at a time!
1 week ago