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Sunday, July 31, 2016

Hello all, Hope you are all doing good . We are doing good , we have been busy the last couple of months we moved back to Sebring and Ari has had a couple of appointments. 

First off Ari had her appointment with spinal surgeon a few weeks ago and unfortunately her spine is at 58% curvature  but she is to young to have the corrective surgery he said she needs to go thru puberty before  putting the rods in so they made her a new back brace with the hopes that will keep her spine from getting to much worse, but  she doesn't tolerate more than 2 hours and He wants her on a muscle relaxer again she was previously on baclofen which did lesson her curve but it caused her to drool so much that she was choking on it and we stopped giving it to her after and it physically didn't look like it was helping anything..So we have opted to try a more natural approach and started her on CBD oil its called Haleigh's Hope or HH for short. It has been 2 weeks this past Saturday that she has been on it and I have noticed small changes on her muscle tone so I am praying that this will be our answer for her. The suggestions is to start small dose for 3 weeks and then increase the dose every 3 weeks until we get her seizure free or whatever the results you are needing are . There are many parents who have successfully gotten results with seizures using HH but we are hoping for muscle spacitity relief .

the picture on left is current and the one on right was around 6-8 months ago

We also went to the neurologist this week . He gave us a prescription for Zanaflex for her muscle (I haven't filled it quite yet I wanna give HH a few more weeks) and suggested we look at  placing a VNS (vagus nerve stimulation) to try and control her seizures it is a small generator about the size of a watch and its placed under the skin in the left chest ares and it has a thin wire that connects to the left vagus nerve under the skin in the neck  that sends pules to the nerve to stop seizures.I don't think we will be going that route unless her seizures get worse.  Her Dr gave me a name of another pediatric Neurologist that is certified to prescribe CBD which is now FINALLY available her in Fl. They have just opened one dispensing clinic in the state but i'm sure the list is long for getting it but if Ari needs more THC in her CBD oil we finally hopefully  have that option .

On August 19th we go back to Shriner's to see a Dr for her hip and discuss treatment. Her right hip is out and causes her pain. She keeps her leg bent all day and night and she has kept it this way so long i'm not sure she can even straighten it if she wanted to. I was hoping that her tone would change (like it always has) and her hip would go back once the tone was moved like it did with the left hip but that hasen't happened and now she is in pain I know we need to go ahead with the surgery.

This is how she keeps her leg all the time

Arianna also had a birthday on June 25th she turned 11 I can't believe she is that old already the time is just flying by so fast . We just had cake and a few presents with us nothing big. I think I have covered everything I will update again after our appointment with the Dr for her hip. Thank you all for continuing to check in on our princess. 

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