Malia Moore

My stander arrived last weekend. Geovanny, my PT in San Jose, custom made it for me and it is beautiful. He did a very nice job. At first I was not so sure about it. I mean I have to be strapped in it but you know after a bit of time and patience I like it. It is perfect for me to look all around and work on my neck control. I also am putting weight on my feet and hips which is very important as well. I usually practice standing in it two times a day for about 20 to 30 minutes. Daniella works with me in it in the mornings and my mom and dad in the afternoons. Daniella makes the time fly by!  She sings me songs and moves my arms all around as if I am dancing. She is funny and makes me laugh! It is never a dull moment for me around here!

Malia 🙂

Since Thanksgiving things have been going well. I have had a few road bumps along the way  but we are moving through them. On the 27th of November I had a seizure. It was the first time I had experienced a seizure in over a year. I have been very blessed not to have had them since September. One day Daniella and my mom were working with me at the platform, we were working on my neck control. I do this one exercise where the ball is between my legs and I put my hands on the ball and lift my head up. I am really good at this exercise. Next thing you know my head came crashing down and hit the ball. My mom thought it was wierd that I did not have the control like I normally do. We did the exercise again and my head banged the ball one more time.  My mom knew then that something was not right and laid me down on the table. The next thing you know my legs were flinching every ten seconds and this lasted about 5 minutes. The seizure made me very lethargic.

Seizures normally come on when I am waking up from a nap. I had another one the following day after my nap that lasted a bit longer. My mom called my neurologist and we have increased my seizure medication. I have not had to increase my dosage since I was six months old. It makes sense to have to increase it as I am a little chunky monkey now. I had a few more seizures over the next few days but the increase in medication has helped control them. I am hoping they go away again for good. The type of seizure I have is called West Syndrome. It is the only seizure that actually causes devlopmental regression! It is really important we get my seizures under control beacuse all my hard work and effort over the last two years are in jeopardy if I begin to consistently have these seizures! So all my friends out there say a prayer for me that the seizures go away!

Love Malia

What a beautiful day today. A day to be thankful for  many things. My family and friends who love me so much and for those who do not even know me but help me in many ways.  I am thankful for my health, my happiness, my strength, and my well being. I am thankful every day that I am here to enjoy each moment, to smell the ocean, and hear the waves. I am thankful that I have two parents that love me so much and take such good care of me. Hope everyone had a wonderful day!

We went to George and Karen’s for the day! I had the day off but got to swim in Karen’s pool and that made me very happy! We had a great day full of good food, and good friends! My mom made sure I had my turkey dinner too and she whipped up some turkey broth, mashed potatoes, pumpkin and carrots for me! Everything was delish and after dinner we went to the beach to watch the sunset and eat pumpkin pie! A great day had by all!  

Love to all,

Malia 🙂

Hi there!

This past Monday we left for San Jose. The journey to San Jose is a long one. Since all the rain we have had the roads are in terrible shape. There are pot holes everywhere you look. What normally takes us an hour to get to the ferry now take us an extra 30 minutes as you cant drive fast with pot holes all over the road! Once we are on the other side it is smooth sailing as there is a new highway we take. I had a week of therapies scheduled. Daniella my current PT has one year left in school.  She returns to the University in January. We are yet again searching for another therapist until Daniella graduates. Daniella had reccommended one of her friends as a candidate from the University so we met Sebastian on Wednesday.  

On Tuesday I went to see Geovanny. He is very good but boy does he work me hard! He was very impressed with me as the last time he saw me was when we had just got back from Texas and I was still really tired from all that travelling and did not show him my best. This time I did. We had to measure me for my new stander. It is very nice. I can stand up and it forces me to work on my neck control. Hopefully I will be able to look all around in it. We had to make a few adjustments but it is almost ready for me to take home.  Tuesday afternoon I went to see Helda at Clinica Red and she put Kinesio Tape on my back and we worked together on my vision.

Wednesday Sebastian came to our hotel. He is a nice young man. He shows much confidence. We all went together to Geovanny’s office again and I worked out for close to two hours. Every time I leave Geovanny’s I am pooped and sleep like a baby. Geovanny touches me in different ways to make my body work. He has this one exercise  he puts pressure on my cheek and chest to get me to roll over. I am not so crazy about this exercise but it does the trick to get me to roll over. Another one is putting pressure on my feet and elbow to get me to turn my head and pull my arm out. It is hard to explain but it does the trick. Sebastian watched while Geovanny explained all that he was doing with me. We are waiting to see if Sebastian will take the job or not. He has not made a commitment yet but we should know something  next week.   Wednesday night we went to see Krystal and Tia Maria. They made a yummy Italian dish for my mom and dad. We did not stay out too late we were back at the hotel by 9pm as Thursday was going to be a long day for me!

Thursday morning I was working out with Marcella at Clinca Red and later that afternoon I saw Helda again. I worked very hard that day. Everybody loves my new glasses and all have commented on how much better I focus on things. I like my glasses too!

Friday  it was time to pack up and head home. We caught the 2pm ferry and were home by 5pm. What a long week! It is so good to be back home. I had a hard time sleeping that night. The travelling does something to me where it takes me at least 24 hours to get back in my groove. I kept my parents up that night as I would sleep for an hour than wake up again. Mom was up and down all night! I also was grinding my teeth something terrible. When I am agitated I grind my teeth. It really drives my mom crazy. She does not like to hear me grind my teeth she told me it makes all the hair on her stand straight up! I wish we knew why I grinded my teeth so much. Somedays I never do it and other days that is all I do! Oh well, sorry mom! 🙂

This weekend the plan is to relax and unwind a bit and get ready for my week of workouts. My mom has new exercises to show Daniella on Monday. Hope everyone has a great weeekend!

Love Malia

Hola!
 Today was a great day. I woke up to the sun shining nicely on my bed. I had the sound of the waves and birds in the background. (okay my mom has a sound machine that makes the best wave sound. It is like you are almost there!) What a way to start my day. After my dad gave me breakfast I went back to sleep for a bit and then Daniella showed up at 10 and we went out to the platform. My mom told her to get me going on my stretching and she would meet us out there to help put on my new shoes and get me practicing walking!

Once Dainella started rubbing on me and massaging (she has great hands) I began to feel so comfortable that I fell fast asleep. When my mom showed up it was time for me to wake up! Hey it was only a 20 minute power nap! This walking and head lifting is hard work! I have to be rested! Soon I was geared up in my black scuba suit, my neck support collar, shin guards, ace bandages, and tennis shoes! I am ready!

First we started on the ball. I lay over my orange ball and work on my head lifting this as well lets me put pressure and weight on my feet. After 15 minutes of that, Daniella and mom get me ready for walking. Daniella supports my trunk and mom lifts my legs and feet one at a time and together we take steps! Today I did 45 steps. Dont think they are killing me! We only did 15 steps at a time and then I got a little break!

After that it was time for lunch! I put my new glasses on for a while! I really like them! I can see things so much better! It is awesome! After wearing my glasses for  a while mom got out the pirate patch and I practiced using my lazy eye for a while. 
Whew after lunch it is time for my siesta! 

I had a short nap today, so we went back out to the platform this afternoon for a little workout and I wore my glasses. I attempted to grab at a toy! Hopefully soon I will grab and hang on to it for awhile! I am getting hungry time for supper then off to bed!

Buenas Noches everyone! Wonder what tomorrow will bring for me?
Love Malia xo