Malia Moore

On Friday we reduced Sabril one more time down to 250mg. I am almost there. We will probably keep me at this dose for at least a month before cutting out the final 250mg. I am excited and scared at the same time. I am excited with the thought of only having one AED (anti epileptic drug) in my system. I am scared that my seizures will increase again with the latest reduction. BUT….. I shall be brave. If I have to endure more seizures in order to be free from Sabril than that is what I shall do. I have faith that God will protect me from the enemy seizures and let this latest reduction be a smooth one for me and my family.
Love Malia

For 7.5 years I have taken Sabril. It is the go to drug for Infantile Spasms/West Syndrome. I had decent control on Sabril. At one point in time in my life I was taking 4 different seizure medications. We are down to two now and the Cannabis oil. When we were in San Jose donating the chairs to the Children’s Hospital I saw my neurologist. He suggested that we try and take me off Sabril. We had told him how my ophthalmologist had noticed that my optic nerve was much paler than before. It used to be pink and now it is white. The Ophtalmologist suggested that I stop taking Sabril as it has a bad reputation for causing blindness. I surely do not want to go blind. I am very alert and love looking at the people I love.

We decided to wean me off the drug very very slow. At this given time I was taking 1000mg a day. We would start reducing 250mg every two weeks. I had no idea that it was going to be so hard to get this drug out of my system. The first week of lowering the drug I reacted with more seizures. They were longer, harder, more intense. The second week was better and we all felt more positive about the wean. We decided on December 15th, to make the second reduction. The next reduction was awful. I began to have gran mal seizures. If you don’t know what a gran mal seizure is well lets just say that it features a loss of consciousness and violent muscle contractions. They don’t last long maybe 15 seconds but they take every little ounce of energy out of me. My eyes roll back into my head and my body convulses. It is so scary for my parents to watch. I know how afraid these make them.

My mom is keeping a report of all my seizures and sending to my neuro weekly. Since the reduction of Sabril my seizures have definitely increased. On January 30th we were supposed to go down again but we decided to wait and see if I leveled out. There has been a very slight improvement. The Neuro suggested to my mom putting me back on the original dosis of Sabril and trying again at a later date to take me off the drug. My said why in the world would we do that???? Do I want to risk losing my eye sight? Would I want to suffer through the weaning process all over again. No I would not. So what do we do? Seizures VS Eye Sight. Well we are all being tough (especially me) and decided eye sight more important. We have yet to do the third reduction but it is coming up soon.

My mom wrote to our support group and many moms have experienced the same thing with cutting out the Sabril. It is a mean nasty drug and I really don’t want to take it anymore. I am hoping that my next reduction won’t be so bad. I have come so far with my seizures and I just keep praying that I once I get Sabril out of my system things will go back to the way they were before. Any extra prayers out there would be greatly appreciated!

Love Malia xo

Christmas Eve was great. My parents and I hung out together and read the Night Before Christmas before I went off to bed. On Christmas day I had a pretty big seizure so I was not in my best form and we decided to wait and open presents at the end of the day. I almost always have a seizure when I wake up and they can be very strong and wipe me out.

That evening friends came over for Christmas dinner. We had a nice time and opened gifts together. I have really enjoyed listening to the Christmas music and hearing my parents sing. Christmas sometimes makes my parents sad but they don’t need to be….Although I am not opening my presents and hanging ornaments on my Christmas tree I am happy as truly I was a gift given by God.
Merry Christmas to all,
Malia xo

December 1st 2016

After we donated the chairs to the children’s hospital we were invited to attend the annual lighting of the Hospital’s Christmas tree! This tradition of the hospital has been going on for years and hundreds of people attend each year! They have music and many disney characters and of course Mr and Mrs Claus were there. It was the first time for me to see MR. & MRS. Claus!! Santa only wears flip flops out here at the beach and I have never had the opportunity to take a picture with him! It was so much fun and they were so sweet to me! I had my picture taken with a big red squirrel, I didn’t quite know what to think about him! I sure did like the lighting of the tree! I have never seen so many lights! It was beautiful. We have decided that we are going to make December 1st an annual tradition for us to go to the lighting of the tree! We had a wonderful time and it was an awesome day!

The same day of the Children’s Hospital Event, we were called by a reporter that my parents had interviewed with in the past. It was the first time in almost three years that we had seen him. He asked if he could interview us again to see how I was progressing with my seizures and the use of the oil. We of course told him yes and he came to the hotel! Below is the interview of all three of us. He was quite impressed with me. He noted that I was more alert and attentive and kicking my feet around. We are praying that in January of 2017 medicinal cannabis will be passed here.

https://www.crhoy.com/nacionales/familia-asegura-que-cannabis-medicinal-hizo-milagro-en-su-hija/

Happy Holidays everyone,
Love Malia

Yesterday MaliaMoore.Org realized a dream and donated six beautiful handmade chairs and one sofá to the Children’s Hospital in San Jose. MaliaMoore.org also donated a respiartory vibrator. When I was in Children’s they only had one respritory vibrator in the entire hospital. Every time the therapists came to work on me they did not have the vibrator. My parents went out and bought one for me so that when the respiratory therapists came I would have this therapy. These theraputic vibrators assist breaking down phlegm in the lungs and is very important when children are trying to breath independant from the ventilators. Dr. Chavarria, the head of the Respiratory Dept,was very happy to receive another one today as he told us the one they were using had just broken.

Six years ago in December 2010 I contracted an infection which later entered into my bloodstream causing sepsis. I spent six weeks intubated in intensive care at the Children’s Hospital and once out of ICU I spent another 25 days at Hospital CIMA.

After the third week in ICU the doctors, pallative care team, and priest came to talk to my parents about the possibility of me not surviving, I was very sick but I had not lost the strength and determination to live!

Children’s is a publicallly funded hospital and they have strict rules about family visitation especially in ICU. My parents were not allowed to visit me at the same time only one parent in the room. On New Year’s Eve, they did let my dad and mom sit next to my bed and watch the fireworks from the hospital window since it was a special occasion.

The seats outside of ICU were hard plastic chairs and very uncomfortable. Many a night my parents shared hugs and stories with other parents out there. The parents suffer too and my parents have always wanted to donate comfortable chairs for the parents who sit outside waiting to hear news of their children. We were able to make that wish come true. My mom and dad organized for the chairs to be made and on December 1st we donated the chairs. It had been six years since I had been back inside that hospital. The director of ICU, nurses, and doctors came to thank us and see me. Nobody could believe how big I am. It felt really good to give.

Christmas is the time for giving. I hope that the donation brings some comfort to the parents sitting outside of ICU. Who knows maybe children’s lives might be saved by using the vibrator to help get their lungs clear. Our donation would not have been possible without the help from all of you. Thank you all and Happy Holidays!
Love Malia

This Thanksgiving I was blessed to have my Tio Carlito come down to celebrate Thanksgiving with us. Just days before he left we received notice that there was a Hurricane brewing up in the Caribbean between Costa Rica and Nicaragua. We gave Carl the chance to change his mind not many fly into a Hurricane! The Hurricane was forecast to hit on Thanksgiving Day! Carl arrived Tuesday night and flew out to Tambor Wednesday morning. This was the first hurricane in 174 years to make landfall in Costa Rica. At the begining of the week I was having to be on oxygen as I had much phlegm. Mom and Naty were giving me nebulize treatments as well. Sometimes if the wind blows hard in CR our electricity goes out. We were getting concerned about Hurricane Otto and what would happen if we had crazy high winds. My parents went out and bought a generator in Cobano. Unbelievably they had one for sale in town. We had branches close to the house and Naty’s rancho cut down. We battened down the nursery.. We had plenty of storage tanks for water, food, and gas for the generator. We were prepared. My mom kept saying nothing will happen because we are too prepared!

We typically always celebrate Thanksgiving, minus last year as I was not doing well. Dad was going to smoke a turkey and pork on the pit outside and mom made a ton of sides and two pies! We had invited 20 of our friends. Everyone thought we were crazy to be planning Thanksgiving in the middle of a hurricane but we did and our friends came and dad managed to smoke everything to perfection. The evening was lovely and we had a great time with friends and family. It did not rain a drop that day. Even though the government had us in a red zone we were completely missed. We were so very fortunate but other parts of Costa Rica were not. Much damage was done and people lost lives and their homes. I was happy to donate clothes to children who had lost it all. We sent food to the red cross to give a hand in need. We continue to pray for those families and actually to families every where as there seems to always be a crisis of some kind happening in the world. Bless the children everywhere. Happy Thanksgiving.
Love Malia

Back to my earlier post, I am grateful.. Grateful to have each day. We should not worry about what tomorrow brings but be thankful for the day we have. Hope all had a lovely thanksgiving.
Mucho amor,
Malia

The month of November, I have so much to be grateful for…….I am grateful for my mom and dad for taking such good care of me. Grateful for Natalia for helping me to get stronger every day. Grateful for the friendship we have bonded over this last year. I am grateful for all my family and friends I have in my life. I am one blessed little girl. Even though my seizures have not been great, and somedays are harder than than others, I am grateful that I don’t have as many seizures like I used to have before. I am grateful for Cannabis as it has helped me so much in so many ways. Grateful for each day that I am able to share with you all.
Love Malia