My Story

Julia (Lia) has neurofibromatosis or NF-1, it is the most common neurocutaneous genetic disorder (approximately 1 in 3500 births). I've often been asked why Lia's doctors are following her the way they are. I've listed some of the more common questions and their answers in one of my journal entries on 11/13/06. Check out my links to visit Lia and Jamie's Quilts of Love:)

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Journal

Wednesday, May 20, 2009 10:02 PM, CDT


Been a busy month since my last update. Lia started her OT at Easter Seals and it's been fun so far, she enjoys it though it wears her out.  She had her Transition meeting to plan her transition from Early Childhood into Kindergarten (eek)- at first they were only looking at providing speech services!??!?!? Forturnately we got that squared away quickly. She'll be getting 75 minutes a week of academic support (number recognition for starters), 90 minutes of OT, 40 minutes of PT, and 90 (?) minutes of speech.  Hopefully this will give her the support she needs without totally overwhelming her.  She's so excited about starting school! 

Lia's got her 5 year old physical on Friday, we need to get in to neuro, eye appt in July, otherwise pretty routine (hahaha). 

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