May 6th

The muscle biopsy results (which will either prove or disprove that Harley has Alpers Syndrome) haven’t come back yet. The MRI results, however, ARE in, but we’ve heard 2 different things from 2 different neurologists. 1 said her brain DID shrink more, the other said it’s about the same. I wasn’t there when they came in and talked to Cameron, so I haven’t seen the new MRI compared to the last one, but when I do I’ll let you all know what’s going on.
Harley seems to be doing a little bit better every day. Yesterday, Daddy and Grandma (Cameron’s mom) took Harley out for a wagon ride. She even got to go outside! It’s the first time my poor Honey Bear’s been outside in over 7 weeks! (Since she was admitted.) She kept her eyes closed the whole time, but that’s because she wasn’t used to the bright light. Grandma also worked with Harley in moving her arms & legs. She even got to hold the TV remote! It’s okay, we told her we wouldn’t tell Daddy. She’s starting to control her head better, too. She’s been opening her eyes wide open for us and looking all around her room and even watching some TV.
Tomorrow around 8:30am Harley will be going in for surgery to have a GJ tube put in. It’ll be a valve in the side of her abdomen with a tube that runs to her intestines. It’ll be in place of the feeding tube because it’s more permanent and causes fewer problems. I’ve been told it’s a common procedure, so we shouldn’t have anything to worry about.
That’s about it for now… Once again, thank you everyone for all your support!!!