Thursday, July 2, 2009


So yesterday we had 2 appointments: 1 with her PCP/Normal Pediatrician (Dr. West) and another with the surgeon's office that did her muscle biopsy & GJ tube surgery (Dr. Avalia & Dr. Egan). Her appointment with Dr. West was at 11am and the surgeons one was at 2:30pm. Well, let's just say Harley missed her noon meds... and her 2pm meds... and her 4pm meds (which was just a breathing treatment: she's not dependent on them, so that's good). Those include a few seizure meds and some anti-nausea meds (not exactly, but best way to describe them).

Now, you would assume her being on so many meds she would be dependent on them and start having seizures and throwing up more, right? WRONG. (?) It surprised us, too! She did SOOOOO much better OFF the meds than when she's ON them! She didn't throw up ONCE all yesterday, had maybe 1 or 2 seizures (only for a few seconds) and was awake and happy! I talked to her, she'd look at me and make eye contact and she was more affectionate, too (gave me more kisses). She stayed awake for about 4 or 5 hours STRAIGHT and just seemed to be doing all around better!

Here I thought my daughter was getting so bad that she's too weak to stay awake for longer than an hour at a time and I come to find out she's just been knocked out from her meds! My poor Honey Bear! I'm going to call her neurologist and make an appointment for sooner than the one that's already scheduled: I want some of these meds GONE if we can help it (and it's looking like we can...) or at LEAST decrease the dosage.

Harley's been doing pretty good, though. She didn't throw up ALL yesterday and has only thrown up once this morning and it was only a little bit. Yay Harley! I'm sure she's happy, too. Thank you all for your continued support and I'll update again when I get a chance!

1 comment:

  1. Nice to hear some good news & so glad she is doing better. PRAYERS & HUGS:)