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Tuesday, March 9, 2010

Update on the Neurosurgeon Appoitnment Today

Madi is officially tethered, which I really already knew.  It is not too bad, and it is lower down her back, but it is there.  Dr. Moss said that Madi is kind of in the grey area where she might benifit from a cord release, but at the same time, it may not be a huge necessity.   Our decision was to wait another 4 or so months, check her bladder/reflux again, and see if it has gotten better or worse.  There are basically 5 reasons to de-tether a cord, and Madi only has 1, but it's a big one.  Our goal with her bladder/kidneys is obviously to protect her kidneys.  The tethering may be why her renal reflux worsened.  If the cathing (we do this every 4 hours, so it works out to about 4 times a day) does not help her reflux, we will consider a detethering surgery.  This could be the only surgery she may need, or she could go through it only to tether again.  He did say that the rest of her spine looked good.  There were not "water" pockets up it like some children have.  Overall, things looked really well.  Thank you for keeping Madi in your prayers! 

Oh, another huge answer to prayer.....  Shriners is flying Madi and I down to their Las Angeles center in May to evaluate her.  If they decide that she is eligible for Shriners, they will help with some of her surgeries as well as standers, AFOs, and other items (not wheelchairs, though).  We will fly over on Thursday,  May 13th, stay that night, be evaluated on the 14th, and fly home that evening.  So that we can save money on airline costs, it will just be the two of us (Shriners is paying for my airfare, so our only cost will be hotel and food, but they only pay for one parent.  They offered to pay for David since Madi is still free, but we decided I would just go by myself).  They will also send a van to get us from the airport so we will not need a rental car.  I will stay with Madi in a hotel or, most likely, a Ronald McDonald house.  If they accept her, we can go to the local traveling Shriner's clinic in the future.  They do not have pediatricians at that clinic, though, so we had to go to LA for the initial evaluation.  If anyone is looking for a place to donate to, Shriners is it!  They are amazing!!

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