Malia Moore

Today when I woke up my fever was back and a little higher than yesterdays. When my dad gave me breakfast this morning he noticed a dark black substance from my gtube. This definitely alarmed my mom and dad. My mom called Dr. Mora (my GI) and asked his advice. He did not seem too concerned and told us to get a blood test that maybe I might have an ulcer or upset tummy. Obtaining a blood test in Cobano would be the tricky part. We thought we would be able to draw blood from my finger for this test. We we arrived to the clinic, we were told they would have to take the blood from my vein. We knew this would be a problem for only Maureen in San Jose knows how to find my veins. My mom told the nurse he had three chances. He did not succeed and we went home.

Once we were home, mom and dad made the decision for us to leave for San Jose. We were scrambling to get everything packed up and were trying to catch the 5pm ferry. My heart rate had accelerated so mom called Dr. Castro my pediatician. She as well did not seem too concerned with my low grade fever and higher heart rate. We decided we would go in and take a blood test the following morning.

We arrived in San Jose at 9pm. Overall I had a good journey. I was not fussy. I was alert and my fever had broke. My heart rate was down as well. Once we were at the hotel I went straight to sleep. At 10:30pm I woke up. Mom and I hung out together in bed. I was not crying I was just not sleepy. I could not really get comfortable. My mom was still not too concerned as she knows that when I am not at a 100 % I sometimes can not get myself comfortable.

Malia

December 27th 2010

It is back to work for me! I have had a great vacation with three days of relaxing and fun! Daniella showed up this morning and we went to the platform to work out. For some reason I still feel tired. After Daniella and I did stretches together I fell back to sleep. Daniella is so sweet to me she always lets me take cat naps whenever I want to! When we came back to the house for lunch, Daniella thought I felt hot so my mom took my tempature. Sure enough I had a low grade fever. After lunch I took a nap and my fever went away. My mom was not too concerned as I really did not have any symptoms with my fever.  I later had dinner and then was off to bed as usual. That night I slept well.

Malia

What a great Christmas we had together. We slept in late together even Selva and Indio. My mom and dad let me sleep with them last night as they told me the best Christmas present for them is waking up and looking at me! 🙂
We opened presents then had lunch together. Santa was good to me as I have been a very good girl. Dad smoked a turkey the day before to take over to our good friends and neighbors Piti and Miguel. We were having a turkey throw down as they cooked theirs in the oven. Mom made the Moore’s infamous stuffing and two pumpkin pies! We had a wonderful afternoon together with good food and great friends. Hope everyone out there had a very Merry Christmas!
Love to all,
Malia

Merry Christmas Amore Mio!

Dear Malia,

Another year has passed that we have had the privledge to spend with you! You continue to amaze your  mom and dad! Your courage, ambition, confidence and darling personality continue to make us so proud! This is our third Christmas together and every year we realize that you have been the best gift to us that we could ever possilby have. Thanks for being such a wonderful daughter! Your love for us gives us strength each day! Your are such a fighter and you work so hard every day! We could only wish to have your determination and strength! You give us so much joy. Merry Christmas sweet Malia. Thanks for always keeping us on our toes, life would be so boring without you! May the New Year only bring you more strength and determination to keep proving all the doctors wrong!

We love you,

Mom and Dad

I am having a great week. I have only had one seizure in a weeks time and I am continuing to do wonderful things in my therapy. Yesterday for the first time in my life, I stood on my feet by myself. As you have seen in pictures before we always put shin guards on my knees so that I am not able to double my knees. Daniella was working out with me and noticed that I was pusing off on my feet. She decided to try something new and put me on the ball without my shin guards. I always have a hard time putting weight on my feet. Since I have been practicing standing in my stander I am gaining more confidence in myself. Daniella put me over the ball and I stood on my feet without doubling my knees all by myself! It was a great feeling for me to not have to wear the shin guards and for me to feel the weight of my body on my own. Thanks Daniella for having confidence in me! I did this three more times and as well did it today for my mom and dad! They are so proud of me and I am pretty proud of myself!

Only two days before Christmas, I wonder what Santa has for me?

Mucho amor
Malia  🙂

Last Monday I decided I was going to sleep in late. My mom and dad had gone to town and had left me with Daniella and Luisa. They do a great job looking after me whenever my parents are not around which is almost never! Ha! It was 11am and I still had no woke up yet. So they started to call my name, flipped me over on my side, patted my bum, tickled my feet, and I would not wake up. So they called my mom. When Luisa said I would not wake up my mom nearly fainted. Iwas breathing good I just was in a deep deep sleep.  My parents headed home right away. Twenty minutes later, Luisa picked me up out of bed and that woke me up! Geez I was having such a good sleep! The next thing Daniella was taking me out to the platform to work out. There I had a seizure. By the time mom and dad got home I was getting ready for lunch. I was doing okay I was just very tired. The seizures can take alot of energy out of me. I took a 2 hour nap later that afternoon and when I woke up I was very groggy. I really did not want to wake up. I guess you could say I was in a fog. I dont know what to think about that. After dinner I went to bed and slept all night.

On Tuesday, I was back to myself up and at it with no sleeping problems. I did not want to work out and was very lethargic. My mom had contacted the neuro and we think it might be the additional increase in medication and seizures that made me so sleepy that day. My mom also called upon another expert her good friend Tasha. She has a little boy named Jordan who also has Lissencephaly. They talked for quite sometime about me. Tasha made my mom feel better as Jordan after seizures sometimes can sleep forever.

By Thursday I was feeling better and was begining to work out with more strength. My mom worked out with me today and tomorrow as Daniella had to go to San Jose. Daniella always calls my mom “la mano duro” which means the tough hand! I can easily get  Daniella to stop working me out by giving out a few crys. My mom on the other hand, doesn’t let me get away with squawking and continues to work me out!  She is no push over!

Friday we decorated our Christmas palm. Me and dad supervised my mom. It turned out beautiful and I really like to look at the lights.

When Daniella showed up on Saturday I worked out for two hours straight and did a great job. I was back in action. I only have had two more seizures since Monday and they were small. My parents will take me in after the first of the year to get blood work done on me and to see how my liver and blood count is.

Yesterday was Sunday and my day of relaxation! We went to George and Karen’s at the beach. I went for an hour swim in their pool. We had a beautiful Sunday together. Tia Maria came as well and swam with me in the pool. Today she left for Italy. We will miss her! Christimas is around the corner. I cant wait!

Love Malia 🙂