Malia Moore

I have a new friend. His name is Krishnan. He is a new/old friend of my parents. They met him 13 years ago at a wedding of a mutual friend. Krishnan decided to come to Costa Rica. It was his first time and he sent my dad a message to say that he was coming they had not talked in 13 years! It turned out that our old house was available and Krishnan rented it for a few days while he was here. We had a most wonderful time with him. Krishnan loves to cook, play music, read and write books, tell funny stories and sing to me. We hit it off right away.

Krishnan wrote a book called Babu The Three Legged Dog. It is a story about his dog Babu who was hit by a car and lost his leg. Everyone felt sorry for Babu but Krishnan told them not to feel sorry for him. Babu could still walk and run we was just going to be a little different than the rest of the dogs. I would like to meet Babu one day, I bet we would be great friends. Babu inspired Krishnan to write a book about Babu. Krishnan wrote a children’s book with the help of elementary school students. The students did the illustrations in the book and also helped sing Krishnan’s song Buffalo Bear. Krishnan is a great musician as well and included the famous Buffalo Bear song in his book. You see the lyrics go like this….. Buffalo Bear, doesn’t have a care, Buffalo Bear he does not have a care,,,, he has the eyes of a Buffalo and the back of a bear!! We must have sang that song a million times while he was here.

I have a funny story to share. One day when I was riding Conejo, Krish was filming. We were trotting down the green grass and Krish was looking my way rooting me on as I was doing so well! Here we all were running but Krish had his backed turned when all of a sudden CRASH, SMACK, OUCH!!!!! Krish ran into a palm tree. They must have watched the video 20 times.. All you see is me on Conejo then my mom scream and a loud smack of the tree…. THANK GOODNESS he was alright! Once we all knew he was okay it was time for a good laugh! Silly Krish, you better be more careful next time! 🙂

Some mornings instead of doing physical therapy we did music therapy. We sang so many songs together. He played background music to Skippy John Jones, he made up funny little songs and would sing to me at dinner.. He pretty much sang and played guitar and anything he could beat on the whole time he was here and well, you all know how much I love music!!!! He and my parents sang together too and one night we had a jam session and Maria Jose came over as well and helped me play percussion. My dad videoed mom and Krishnan singing my song Three Little Birds. In the end, Krishnan has decided to fly from Canada to my benefit in September and he and my mom are going to go up on stage and sing my song!!! Thanks for coming to visit me Krishnan. You are a good friend with a beautiful smile and beautiful heart…… Hope you come back soon……. PVOL Malia

May is always a rainy month. We have been doing more therapy inside my new room instead of at my yoga platform. I have a nice big room now so I have plenty of space for all my things and can workout on the floor nicely. I have pretty much had seizures every day of this month. We have talked to Dr. Luna and have raised my medications but we are not seeing a difference. My mom and dad have scheduled an appointment with a Neuro Nutrionist in Portland Oregon. She specializes in diet with kids that have seizure disorders like me. My parents had a long conversation via Skype with Carrie Loughran. She was very informative and has requested that I begin taking L Carnitine, Folinc Acid, Liposomal Glutathione,and Phosphatidylcholine. These are metabolic nutrients that are to help clean my system and hopefully raise the level of Carnitine in my body as Carnitine is a huge player in fighting off seizures. When tested for my Carnitine levels they were almost depleted and Carrie said the worse she had ever seen! So I have to get that number back up and hopefully with the increase my seizures will decrease. If it were not for the daily seizures things would be just perfect! 🙂

The other day, one of my mom’s friends in her support group posted a link of a report about medicinal marijuana helping children fight seizures. It was a very interesting report and we are trying now to find some CBD oil. Medicinal marijuana is legal in some states in the USA and is also legal in Canada. It makes sense to me that a plant GOD put on this earth has so many medicinal properties in helping cure and ease pain. CBD oil does not have THC. The experts in the lab take out the THC and only leave the CBD which is what helps with the seizures. Since I am on three seizure medications and at full dosage we are really hoping to try it and see if it can help me. Here is the link if you would like to learn more about it. http://www.washingtonpost.com/video/thefold/medical-marijuana-renews-hope-for-children-suffering-from-seizures/2013/04/24/4eb5419e-acdb-11e2-a8b9-2a63d75b5459_video.html

MariaJose has me doing all kinds of activities now. I sit at my desk and try and get Elmo to sing to me by hitting my switch button, I paint, make cards, and play with playdoh. Then later we have therapy and of course my afternoon stroll. My must favorite time of the day. I am doing things I have never done before like holding my feet for 5 minutes, bearing weight in my hands, making new sounds, and most of all I am VERY attentive!!!! I can only imagine how much better and stronger I would be if I did not have to deal with those seizures! Hopefully soon we will find a cure. My parents are working very hard on it.

All in all, May was a nice month. We were able to be here and not in San Jose, and that is always a great thing!
Love Malia xoxox