Malia Moore

September 9th
Day 2 Journey to Texas
We woke up at the hotel with the sun shining. We always take a day to rest from our journey from home to San Jose. Mom, unfortunately has all three of us lined up to see the dentist, Dr. Simon Mermelstein. You might remember the name, his wife Linda, was my first therapist when I was only 1 month old. Me and Dad were not to keen on the idea of having to go to the dentist on our relax day but then as they say Mom knows best!

I was first in the dentist chair, Simon said that I had really good hygiene and my teeth were looking good. When he stuck the sharp pointy object in my mouth to scrape off the plaque I was not the happiest of campers but I did rather well and only complained a little bit. I have no cavities! After my teeth were cleaned and sparkly white it was my mom’s turn. Dad was in the other room. My mom really does not care too much for the dentist and is always apprehensive. Thankfully I was there to hold her hand! 
After we finished up we headed back to the hotel to finish packing. Maria Jose showed up later that evening. After dinner it was off to bed early as our day will start tomorrow at 4am. I am so excited about our journey.
Love Malia

September 8th, 2013
We are on our way to San Jose for my 5th annual fiesta!!! I am so excited to be going to Texas to see family and friends!!! There are two new Lissencephaly mom’s that are flying to the benefit to meet me! I cant wait to meet Kathy and Kate in person! Of course the other mom’s that come each year will be great to see as well! My mom and dad got up super early to get prepared for our first leg of the trip!! I had woke up at 8am and had a seizure. My parents were not happy to see the seizure monster again as I had not had one for four days and it is so great when I can get a break from them! It was pretty strong and I went back to sleep. I woke up later at 11am and my parents plan was to leave the house at 12:30 for the 2pm ferry…. I had another seizure upon awakening the second time. It lasted for 30 minutes and as well wiped me out. Indio and Selva came up to me while I was having my seizure and licked my hand. After I was done mom rushed to bath me and her and dad finished loading up the car. The dogs were very sad to see us go.. They kept watching every move and with the saddest faces.

We pulled out right on time at 12:30 and I went back to sleep in my car seat and mom began to give me lunch. The ferry was super crowded but Miguel and Ronald at the ferry always are so kind to us and we get to skip the line and go straight on board. We always stay inside the car, it is too complicated to go up top where everyone sits. We are loaded down!! We have my medical box that weighs 50lbs, 3 suitcases, my oxygen machine, and of course all are carry on!! We cant wait to get to Dallas. Traveling is a bit hectic for us! The traffic into San Jose was crazy, Sunday is not the best day to drive to San Jose but we made it! After I woke up from my nap in car I had another seizure. 🙁

We made it to the hotel and I was ready to get out of the car. That is a long drive to be in a car seat. I was so happy to stretch out on the bed! We ha dinner and went to bed early. I had one more seizure though before finally falling into a deep sleep… Four today. Mom and dad are praying for no seizures on the plane. That always makes things stressful!!!
Love Malia

July……

My therapy with Maria Jose only gets better. It is amazing how I feel so much stronger. I have been taking new supplements for months now that are definitely helping me. Maria and my parents notice that I have more attention, am happier, sleep better, and my muscle tone has increased. At times, I am sitting on my own. My horse therapy has helped me so much as well. It is amazing, and sometimes I have to pinch myself and ask is it really true? Am I healthy, smarter, stronger? Yes I am. It was such an awful year last year but this year has been incredible. I am so grateful to all who have helped me get to this point. More so I am so grateful to God for blessing me with a family that loves me dearly and a therapist who has all the faith in the world in me. I am truly blessed.
Love Malia xoxo

July has flown by me! We have been so busy with birthday’s and friends and family visiting that I have not found the time to express my mind!

The beginning of July started off rocky. We went into SJO because I was way overdue on two vaccines. My parents are not too keen on giving me the shots as many times I have side effects. One shot in particular called Pertussis can cause me to have more seizures. At the moment my seizures have increased. I am having about three a day, anywhere from 5 to 30 minutes long. My doctor and parents agreed that it was probably not best to give me the pertussis shot so instead of getting DPT, I just got the DT. Diphtheria and Tetanus. The other shot was for measles and rubella. Mom gave me some tylenol before the shots but it was the effects afterward that really bothered me. For almost a week I did not sleep. I cried, was uncomfortable and cranky. Three days passed with maybe 2 hours of sleep each day. After the vaccine slowly began to leave my body I slept for almost an entire day. I will say again that me and vaccines do not do well together but the worst is over and I don’t have to have another one until I am ten years old! On a good note, my grandparents, Claudia and Bobby have arrived and are waiting for me when we get home! I am so looking forward to seeing them! 🙂

The following week our dear friends George and Grace arrived. We were excited to see them again. This year they missed my birthday but Uncle George and Grace made it for my mom’s birthday! We had a most wonderful time with them. We had an awesome trip to the beach and cooked dogs, and went for strolls and hung out listening to the waves. Uncle G fed me many nights and read me books and Gracie did too! We are having a great time with everyone and many of nights we get together and cook and tell stories.

We were sad to see them go but know they will be back next year. It has been great having friends and family visit us and my grandparents are here for another month! The time sure does fly by though! Before you know it I will be on a plane to Texas for my 5th Benefit!

Love to all,
Malia xo

https://www.youtube.com/watch?v=vIIPbY1Qdrc&feature=c4-overview&list=UUtz9PDtXMIlaZhE8FssoNcQ