Malia Moore

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. https://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

April 9th 2013

Here is how the story goes…..Ever since Irene was working with me we have talked about horse therapy. You see, Papillo our neighbor, has been telling mom for a year now to put me on his Conejo. (conejo means rabbit in Spanish but conejo is really a horse!) I was never able to ride Conejo last year as we never had a moments chance as I was always in the hospital! So finally the time has come!!! 🙂 What is really neat is that Papillo has a grandson who has special needs and Choo has been riding Conejo ever since he was a little boy. Choo doesn’t speak like me but he can talk with his eyes! Conejo has the reputation around town of being the mildest, sweetest, most easy going Horse and I cant wait to get on him!

MariaJose was not trained in Equine Therapy(horse therapy) so mom and dad sent her to a program outside of San Jose where she went for two weekends and learned how to ride with special needs children. SHe learned many different techniques and enjoyed the class and the instructor! Once I had approval from my doctor I was ready to go and try out riding Conejo with Maria!! First Maria had to get to know Conejo. Papillo brought Conejo to my house and everyone had the chance to get to know him! Selva and Indio were not very impressed with having a horse around and barked a bit but they knew better than mess around! After Maria familiarized herself with Conejo, she brought him over to me. Right away we were very intrigued with one another. We just stared at each other and Malia took my hand and petted Conejo nose and I liked the way he felt. The first day was simply an introduction of Conejo to this crazy household! Conejo is going to fit right in!

The following week it was time for me to mount Conejo. Maria put me on Conejo and I did quite well. Maria told me that many kids the first time they are put on the horse they cry but I did not want to cry at all. I was quite happy being up there! Conejo has soft hair and he is very gentle. We hung out like that for awhile then Maria remembered my black neoprene suit that I use to help me sit better. So we changed me into that and then she laid me over Conejo’s tummy and we went for a very slow walk. After that we rode backwards which was neat and I did pretty good for the very first time. I began to get a little fussy and had to have my mommy hold me for a minute but I got back on and off we went. I was on Conejo for thirty minutes and for the first time I am feeling proud of myself and Maria! She did an excellent job balancing me and herself. The benefits of equine therapy is that it will improve my balance, muscle tone, and motor coordination. Being on top of Conejo stimulates my entire body. It is a great new therapy and I feel very privileged to be able to experience it. Papillo our neighbor has agreed to bring me Conejo once a week so that I can ride! I cant wait for the next time. Thanks Mom and Dad for doing this for me and thank you Maria Jose for being such a great therapist. You make me feel safe in your arms.
Happy trails,
Love Malia