Archive for January, 2017

Sunday Funday

Tuesday, January 24th, 2017

Yesterday was a fun day! We went to the beach to celebrate one of my best buddies Genesis. Genesis, is Bismarck and Maritza’s daughter. Bismarck has worked for our family for 16 years. Genesis was born 5 months before me. She is tall like me but she is much darker than me! Everyone jokes about us being rice and bean, me being the rice! Ha ha! Genesis has a very sweet manner around me. She cares for me and that makes me feel really good inside. The party was very nice lots of friends and down at our very beach spot Los Cedros. Natalia of course went out of her way and made the most spectacular piƱata ever! It was a palm tree and I helped supervise her making it! I took a cat nap while at the party, I could not help it! The sound of the ocean and salt water air made me sleepy.

I can’t help but think sometimes if I had the capability to run and walk like Genesis we would be running all over our property together. Instead we hang out at my house and do projects together. She is a good friend and I am lucky to have her in my life. Happy Birthday Genesis, wishing you many many more.

After the birthday, we went to Dona Karen’s house for a dinner party! Mom put my feet in the pool and we chilled for a bit talking to our friends and catching up with everyone. It was a fun filled day, we stayed and had dinner and then headed home! Of course you would think I would have wanted to have gone to sleep after such a long day of sun and fun, but no I was wide awake until midnight! Finally decided to close eyes…. I had a pretty good night, minus a couple of seizures.

keeping strong

Sunday, January 22nd, 2017

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


Tuesday, January 17th, 2017

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

The Lighting of the tree!

Tuesday, January 10th, 2017

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

Santa and Me!

Monday, January 2nd, 2017