Friday, April 20, 2012


WELL..... it seems like when things are "normal" around here I don't post and then when the shit hits the fan, I'm back to blogging....  My sweet Ayva, she's been having seizures pretty steadily for a while now.  About 3-6 a day- some of which make her nap for 2+ hours afterwards.  SO after a 24 hour video EEG we've decided (along with her Neuro) to move forward and have Ayva get a VNS.  It will require a 1 hour surgery that places a device similar to a pacemaker (only not for her heart) into her left chest area under the collarbone and a wire is threaded up to a nerve (the Vagus nerve) in her neck on the left.  The device will be set to stimulate the nerve every so many minutes for a certain amount of time.  This will hopefully interrupt the electrical occurrences in her brain that are causing the seizures.

 So we go on the 25th to talk to the Neurosurgeon and set a surgery date.  She will have to stay in the hospital overnight and the device will be off for about 2 weeks while she recovers from the surgery.  Then she will have another appointment to turn the device on and we will go from there. 

NOW, Monday Ayva had an appointment with an orthopedic surgeon about her hips.  They keep coming out of place and we were referred to them from another doctor.  Let me just preface this by saying I was for what went down.  The doctor came in and had her x-rays from the past couple of years (they had been taking them every so often b/c of her CP diagnosis). 2009's x-rays looked great.  Everything was fine.  BUT the doctor asked me what happened in 2009 that was something severe- maybe an illness or a fall....and then I remembered.  May 2009 Ayva almost died.  She was taking ACTH for her Infantile Spasms and the side effects + lowered immunity from the drug almost killed her.  She was in the hospital for a whole month.  She had been high tone before that, but when she got so sick, she lost everything and became low tone, which apparently let her hips slip constantly out of place every time her legs were in a straight position.   Now, instead of her hip sockets being a "c" shape they are more oval "(" which happens every time the hip comes out of it's socket it grinds the bone down and makes the "c" into a "(".  It's irreversible with out surgery.  Our choices are either let her hips pop out and eventually they won't be able to go back in and it will cause her pain-- or surgically fix both hips by cutting the femur and "ball", rotating it at an angle and reattaching it-- then reconstructing the socket to make it a "c" shape again.  ON BOTH HIPS.  The surgeon said her right hip is 90% out all the time and her left hip is 60% out all the time.

This is a big, big BIG surgery.  It will be a 3-4 hour surgery, 3 months in a full body cast, and 6-12 months for a "full recovery"-- for one hip.  She also said that they may not be able to do both hips at the same time with out needing a blood transfusion.  They gave us a hip displasia brace for her to wear at home that puts her in a "froggy" position-- that is the only way her hips are "in place". 

So, after talking it over w/ the family we are going to go ahead with the surgery.  We don't want her to be in pain (I can tell it's starting to bother her now not being in the brace).  She will have her VNS surgery first to hopefully rid her of these effing seizures and then we will work on her hips.  THEN, I am hoping we can be on the road to recovery--no more steps back--only forward.

As for Anna, her surgeon wants to wait to see if Anna will be able to walk on her own soon with SDR surgery.  So we will wait 6-12 months and then re-evaluate.  I'm hoping that either way she will be able to walk on her own-- hopefully w/ out surgery! :)

No comments: