Saturday, July 25, 2009


Harley is officially off the ketogenic diet and on Pediasure! The neurologists are blaming Harley's inability to make ketones on her Alper's Syndrome, but honestly it doesn't matter. She can have SUGAR again! Now I can sneak her tastes of yogurt, ice cream and other candy again! Yay!

Also, they started her on physical therapy yesterday! She came in and worked with Harley and even came back today! I'm so relieved they actually listened to me! I knew it wasn't like them to just ignore my request, but that's the impression I got everytime I asked.

Harley's swelling has gone down DRASTICALLY. They started giving her Lasiks every 12 hours to help her pee out the excess fluids and wow, what a difference! Her skin isn't as tight anymore and she stopped whining and talking all night: she actually sleeps through the night again! Poor girl was just so uncomfortable she couldn't sleep before.

Another thing accomplished is that they lowered her dosage of Phenobarbitol (seizure med)! She seems more awake without an increase in seizures! We're pretty sure they did this because her levels of Phenobarb in her blood lab were high, not so much at our request, but either way we'll take it!

She's also seen the pediatric GI doctor and all that he said was as long as she doesn't throw up any more blood he's not too concerned. If not then that means it was probably from some bruising and irritation from her GJ tube. If she does (it's highly unlikely since she hasn't since Monday) then they'll go down her throat into her stomach with a camera and look around for hemmorages, ulcers, etc. He's pretty confident he won't have to do that, though.

Harley on the outside is also doing GREAT! She's so much more awake (probably the most awake she's been since before her first stay in the hospital!) and looking at everyone and talking to us! I could've swore I heard her say 'Mama' a few times now (or it's just wishful thinking, but maybe not!) and when we ask her questions sometimes she'll say 'Uh-huh' like she's saying yes! Coincidence? Maybe, but it's sure cute anyways!

Well, that's all for now. Hopefully with the next update I'll be telling you all that Harley's home again!

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