As you might have seen on the news, we are going to be moving to Colorado to work with the Realm of Caring Foundation for medical cannabis therapy. You might have heard about the Figi family, Matt and Paige and their daughter Charlotte, they have been featured on CNN and The Doctors...
The Figis were told, as countless others have been, that there is nothing they can do to help their daughter's deterioration. Paige went online searching for ANY other options to help their daughter, there she came upon a case of severe epilepsy where CBD was administered and WORKED to control seizures. Thus, a miracle was discovered!
Through repeated research, the simple FACT is the cannabidiol (CBD) that is in cannabis is drastically helping those dealing with a variety of issues, especially epileptic disorders. Another SAD fact is it is still illegal in over half of the states in the United States. We are working hard to change that for Tennessee but time is crucial when it comes to neurological disorders....time lost is hard to make up in development and LORD forbid the damage a seizure can cause on the brain.
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| Millie in August when her kidneys shut down due to the ketogenic diet. |
We thought we were on a good path, however Millie's last EEG is still chaotic. What this means is that her brain is not communicating effectively in order to properly function. Despite the horrific events this summer on the keto diet and the outrageously high amounts of Sabril daily, she is still not progressing.
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| Millie seizing during her last EEG in Cincy |
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| Girl got style...... |
PT is going VERY well, don't get me wrong...however there is only so much Millie can do until her brain allows her to use her muscles as they are designed to be used. We have heard many things from doctors and they have not been very positive. My interpretation of what they are saying is they don't know WHY this miss-communication in the brain is happening and HOW it is going wrong and therefore they can not help Millie. She is now having not only 20-50 spasms on a daily basis, but also 5-15 seizures which last a few seconds.
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| Mommy and Millie XOXOX |
What we do know is that at 20 months, our beautiful Millie is still a newborn and aside from moving Heaven and Hell we will do EVERYTHING possible to make sure she has every chance available at the best possible quality of life.
So, in an effort to get Millie the help that could work, that is proving in numerous cases to work, we are moving to Colorado. This was a scary and anxious decision as Millie will not be able to travel as long as cannabis is considered a Schedule 1 federally illegal substance. We are leaving everyone who has helped, those that are familiar with Millie, to move across the country to a whole new region.
We are extremely excited and hopeful though :) We are looking forward to the possibility of getting Millie off her seizure meds so she CAN wake up (as her meds sedate her so much) and we can play with her, learn what colors she likes and where her tickle spots are :) Our neuro team in Cincinnati is behind us in our decision, as are a few doctors at Vandy (believe it or not!), they have all been very supportive and encouraging regarding CBD therapy.
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| CUTENESS!!! |
We have had lots of people ask "How can we help?!" Write your representatives and tell them you know someone who is affected by this law!! They work FOR YOU! You tell them what to do, so DO IT!
We are also doing a fundraiser and every little bit helps. We are in the process of trying to sell Penn's business but that by no means will allow us much. The first leg will be flying out there with Millie to do all of the doctor appointments and the paper work in December, then just packing and waiting.....
We have truly been humbled by the outpouring of support from family and friends both new and old!! My heart goes out to those who are in the same situation as we are, those trying to make the move and those who are already in Colorado. The support from the Realm of Caring family has been incredible, they are such a wonderful group of compassionate and loving people!! Thank you to Tennesseans for Compassionate Care and NORML TN for their help in making a huge effort to change the laws so that others in the future won't have to move.
Thank you all again SO MUCH for your love, positivity, prayers and support. Penn and I firmly believe this is all part of our journey through life, we are so blessed to have each of you in it, especially Neal, Sam and Millie!!
