Saturday, August 27, 2011


Have you ever been in a conference or class where the speaker tells you to close your eyes and imagine something?  It is a common imagery and relaxation tool.   For a moment we are going to imagine that we are in the 'studio' of an 1800's seamstress.  We are here for adjustments and alterations.  What do you see? 

Pins, Scissors, scraps of fabric, and painful hours of standing perfectly still to avoid being pricked or cut.  When it is all said and done you leave with a fabulous new design.  Something that is beautiful, custom made, and fits you perfectly.  You love it, you feel great in it, and you know just the way to carry yourself to make it look the best.

Back to modern day and that is exactly what life has felt like.  We have transitioned from summer and last years homeschool to three in public school, one toddler at home learning all that he can, and one 7 year old that is homeschooling but also going to PT, OT, Speech weekly.  We also rotate every other week with her pediatrician and neurology office (although we are currently without a neuro).  Lastly, two girls are in Girl Scouts, one boy is in boy scouts, and all five are in dance thanks to a very awesome dance studio that is committed to God, Family, and Special Needs kids too! 

All of this is amazing, and very exhausting!  Sometimes it feels like we are being poked with pins and sometimes it feels like we are looking in the mirror, thankfully seeing awesomeness!

In the midst of all of the life activity changes we have also added a third AED (anti-epileptic drug).  This is not something that I am excited about.  The more AED's the higher the risk of SUDEP and the more drugs and side effects that are in my baby girl.  However, a week ago she had a status seizure again and we absolutely do not want those to happen! 

This week our beloved Neurologist, who is the best doctor ever :), is leaving the state and heading to Texas to be closer to his family.  To replace him, we have a new doctor in OKC, who is a leading doctor for Lennox-Gastaut Syndrome.  He is awaiting approval from both Tricare and Blue Cross and Blue Shield and we should be able to see him in the next two weeks.  Please keep us in your prayers.  We are really going to miss Dr. Khoury.  He gave us our daughter back and I will forever trust and admire him!

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