Archive for December, 2010

Christmas Eve!

Friday, December 24th, 2010

We took many pictures!

Mi amiga Genesis!

Friday, December 24th, 2010

My Christmas hat from Genesis!

Feliz Navidad Malia!!!

Friday, December 24th, 2010

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

Look at me I am standing!

Thursday, December 23rd, 2010

Standing on my own!

Thursday, December 23rd, 2010

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  :)

Our Costa Rican Christmas Tree!

Thursday, December 23rd, 2010

Week in Review

Monday, December 20th, 2010

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 :)

My new stander

Saturday, December 11th, 2010

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 :)

West Syndrome

Saturday, December 11th, 2010

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