Archive for the ‘Uncategorized’ Category

February

Saturday, February 29th, 2020

January

Saturday, February 29th, 2020

My new PT

Tuesday, January 28th, 2020

The Holidays!

Tuesday, January 28th, 2020

My Costa Rica Benefit 11th Annual

Tuesday, January 28th, 2020

NOVEMBER 16th 2019

This year we did not make our annual trip back to Texas for my benefit and to visit my family and friends. With the surgery and the increase in seizures we decided to stay home this year and celebrate here. It was a beautiful day so many wonderful people helped to make it happen. We had the party just outside our nursery. The place looked absolutely beautiful and we had tents and lots of food and even a silent auction! Many people from town donated items to auction off. We also had two bands play and we had quite the turn out of people. The food was incredible as always. Mom had been cooking up a storm. She had made nine chocolate cakes, pulled pork, Maritza made her famous arroz con pollo, then we had picadillo de papaya made from Nora, homemade corn tortillas from Dona Ida, vegan potato tacos, chimchurri and more! Krystal came in early and helped mom with so much in the kitchen!! So grateful for all the friends and family that we have and for all the love and support that is shown to me and my family each year! :)

George, Janet, and Katie pulled off the silent auction on line in Dallas and it was a huge success as well! We also had a t-shirt campaign with my little bull t-shirt and sold over 100 of them! Very luck to be loved by so many and blessed to have you all in my life! Who knows where we will be next year but this year was definitely a winner and all in my very own back yard!

We were delighted to donate to the Children’s Hospital here in Costa Rica to the neurology department, to Dr. Joseph Gleeson lissencephaly researcher in San Francisco California and to The Parker Lee Project who is always such a blessing to so many children and families of special needs kids!

Love to all,
Malia

Sunday, October 13th, 2019

Dia de Independencia Costa Rica

Friday, September 27th, 2019

September 15th 2019

Today is Costa Rica’s Independence day! We are always in Texas for my benefit this time of year so I never get to particpate in the activities! This year we did not go back to Texas, because of the increase in seizures and the surgery. We were not sure when we would be called by the hosptial and given a surgery date. I was happy to be able to be part of the day.

Roxy of course set out to make sure I had the coolest “farrol” (lantern) ever ! We made a traditional ox cart, made out of recyled products. It turned out so cute. I even had coffee and beans in my cart! Roxy also made me a beautiful blouse to wear with my skirt that MJ had sent to me. It is the typical folklore that everyone wears on Independence day. Especially the students. The day before Indepence day is when there is a parade where the kids take to the streets with their farroles and sing songs and shout out Bombas! (poems)

My dear friends, Gabriella and Genesis came over to take picutres with me as well as Irene, Luisa, Gabo and Javier! THe kids at the school began the march towards my nursery. THere we were waiting for them and particapted in the parade. We could not start at the school, as the road is not asphalted and there were too many holes in the road for my dad to try and manueveur in my wheelchair at dark! THe road in front of my house is asphalted so we were able to walk a bit of the way with kids! It was fun, and there were many beautiful lanterns. I want to give special thanks to Roxy, for helpikng me with my farrol , making my shirt, and dressing me up so beautifully on Independence Day!

Love Malia!

Post Surgery

Friday, September 27th, 2019

Two weeks after being home and being well taken care of by my parents and Roxy we headed back to San Jose to meet with Dr. Sittenfeld. My wounds are healing nicely. Thankfully the stitches are dissolvable and fall out on their own. We were anxious to get my pacemaker officially turned on! Once in Dr. Sittenfelds office, he took a small hand held device that he holds over my pacemaker. His tablet then activates and he can now read from his phone the battery life, how many times the magnet has been used, and adjust the frequency level. We started with a frequency level of 1.25 the vibration would come on every 5 minutes and would last 30 seconds. This would be my setting for the first month. The appointment did not take long at all he told us that he would like to see us back again in a month. When we arrived to the hotel, I had a gran mal seizure. Mom took out the magnet and swiped it over my wound where the pacemaker is implanted. The seizure stopped instantly. It was pretty amazing to see it work so quickly and detonate the seizure. The magnet is to be used when I am having a seizure. Its purpose is to stop the seizure and if it doesnt stop it, to help diminish the intensity of the seizure.

The first two weeks went really well. And although I am still having seizures, the magnet is helping. The third week the seizures seemed to come back more intensely. We knew it was probably time to go back to see the doctor and have another adjustment on the device. I am to keep adjusting the intensity until we get the right level. It is a gradual process. We have hope and in reality we can see a 25% reduction in seizures and that is a good thing…. Fatih, hope, trust….. We have it all. We believe in the VNS and that I am going to be better because of it… Its what we all have to learn in life and that is PATIENCE. It took a ton of patience to get the device and oorganization of the surgery.. So patience we will continue to have! I feel better and I am more alert. I have actually gone a few days without having a single seizure. On those days, I am so alert, happy, interactive, smiling, and kicking my legs with joy..

I am blessed beyone belief, am grateful for all those who helped me get the device and for the doctors who operated and assisted during surgery. Thanks again for all of you who prayed for me~

Love Malia

VNS Surgery August 24

Thursday, August 29th, 2019

August 24th 2019

It’s finally here, the day has come that I am going to get the VNS device implanted in me. Almost a year later after mom embarked on the mission to find me and have donated to me the VNS device. We did it! Today at 7 am I have to show up to CIMA get checked into my room, get my robe on, and then to head down stairs for pre-op. At pre-op we met with Anesthesiologist Dra. Trisnoski. She would be the one to get a line in my vein for the anethesia and antibiotic I would take before surgery. She had the nurse to hold my arm, mom had said you better hold tight. Miss Malia can move she found the vein but the nurse wasnt holding my hand good enough and I pulled back and out went the needle as well as a ton of blood that shot across the room. Time for second try, this time it was a success and the nurse had an extreme grip on my hand this time.

After that Dra. Trisnoski asked to speak to my mom. My dad stayed with me and mom went to talk to the doc. The doctor did a good job of explaining absolutely everything that could go wrong inside the operating room. THe list was long but my parents both agreed that no matter what happened in there that they have only been trying to do the best for me since birth. If VNS therapy proves to help me and reduce my seizures then the risk being taken was worth it. The Neurosurgeon, Dr. Caceres came by to see me and as well talk to my parents about all the complications that could happen inside. THe representative from Liva Nova, Gabrielle Camaya flew in for my operation. He was about the only one telling my parents not to worry that everything was going to be just fine!

At 10:15 they took me in, mom and dad gave me a big kiss and told me they would be waiting for me on the other side of OR. We went to waiting room where we met my Granny, Aunty Kathy, Uncle Jack, Aunty Chrissy,and Mrs. Linda! I had quite the on site support group rooting for me. Dra. Castro walked by the waiting room and got to meet Kathy… Mom has been telling her about Kathy and Lindsay for years! Dra. Castro was going to be observing the operation and also be our inside spy! Once in the operating room she would write little messages to mom to let my parents know how I was doing inside! I have to say I did an amazing job in there. I handled the anethesia great, and Dra. Trinoski kept an ever loving eye on me. Dr. Caceres found the vagnus nerve wrapped the electrode around it and implanted the device on my left side. He is an amazing doctor. After all the hardware had been installed it was time to sew me back up. The surgery all in all took about two hours from start to finish. I had no problem breathing on my own after the breathing tube was taken out. The surgery was a success! I am so grateful for the amazing team of doctors and CIMA Hospital for all that they have done for me and my family. Mom and dad were waiting for me and I woke up to them staring over me with big smiles. We waited in the post op room for about a hour and then it was up to my room. Everyone came by to see me. I was groggy and a bit out of it but overall I did really well and was off oxygen and doing good. The doctors wanted to keep me overnight for observance only. The following day I was able to leave the hospital after Dr. Castro discharged me.

We headed to the hotel where we were staying before surgery and made plans to stay there a few days more! Dad and Jack went back on Sunday to our home in Delicias. The following day granny left for Texas, I was so happy to have her here with me during the surgery. She almost missed it so we were all happy she could stay and be with us. On Tuesday, Roxy, mom me and Kathy headed back home so I could recuperate in the comforts of my own bed! It was a long ride home but I did really well in the trip and the following day I slept in very late.

We are all so happy the surgery is over and so grateful to the doctors and hospital CIMA for everything they have done for us! We are so very blessed. Hoping to have continued progress and poistive news for you! We head back to San Jose in two weeks to turn the device on! :) Thanks to everyone for all your prayers, love and support!

Love Malia

Ella and Me

Wednesday, July 24th, 2019

It was so great to have Ella here visiting us. I adore her and cherish her friendship. She is like a sister to me! I sure do love her mom and dad too… We wish they could come more often to see us as we always have fun!
xo Malia