October 13th, 2019

Dia de Independencia Costa Rica

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

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

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

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

July

July 24th, 2019

July has almost come and gone. Many things have gone on this month. Roxy of course came back to work for our family and wil be staying until the end of the year. Thank goondess. We all love our Roxy. The VNS device has been in Costa Rica since June 19th and I have yet to get a date for my surgery. We are all having to be very patient. The VNS device was donated it is very very expensive. As I had mentioned before in my blog posts, in order for the company to donate the device the doctors and the hospital had to donate their services as well.. This accomplishment TOOK FOREVER and now that the device is here it is taking forever for the doctors to agree upon a date to operate me. Three doctors will have to be in the operating room. The neuro surgeon, the doctor whol calibrates the device, and the anthesiologist. We thought for sure that the surgery would happen this month but it is not going to happen now until maybe mid August. We just have to patient. It is hard to be patient though, as two weeks ago I had a gran mal seizure that took would not stop. My dad and Roxy were home with me when it started mom was at work. Dad called mom and said to come home. When she got home she dad and Roxy had already administered two bottles of Dormicum rectally. They are only allowed to give me three. Mom administered the third one. Still no change. My seizure had not calmed down at all. Mom called the neuro and he suggested she give me a intramuscular injection and use anohther half of a bottle of dormicum.

Roxy being a nurse knows how to give shots. The entire time this was going on Roxy was very calm and in control. Roxy gave me the shot and within seconds the seizure stopped. Everyone cried when it stopped. I was exhausted the seizure had lasted just over an hour. Dr. Luna told mom it was time for her to learn how to give shots to me. Roxy isnt alwasy around and has weekends off! Two days later another mean gran mal seizure hit me. Roxy was there but was leaving for the next four days to go home. Mom asked her to show her the way. Roxy explained and mom gave me the shot. I could tell mom was nervous but she did a great job and again within seconds the seizure stopped. Before the medicine used to work rectally but now it just doesnt seem to do the job. Injecting in intramuscular goes faster into my bloodstream and the medicine can work quickly. Thankfully on this day, one bottle did the trick. Mom continued practicing with a lime she told me it has the same sensation as my booty!

It’s been two weeks since the shot episode, I have continued to have seizures daily but thankfully hot any that have required my parents to use the dormicum. So even though patience must be had when it comes to a surgery date for me it is hard for my parents and Roxy to see me go through so much daily. We just keep praying and know that God will figure it our for us. Any extra prayers anyone would like to send my way would be great. <3

Love Malia xoxo

VNS has arrived to CR!

June 30th, 2019

Two days after my birthday my mom got the great news that the VNS had cleared customs and arrived to Costa Rica. We are so excited. It has taken so very long to get it here with all the approvals, paperwork, and bureaucracy! Hoping to get the VNS surgery soon. It’s just an ongoing battle with the seizures each day. It gives me alot of hope to think that maybe just maybe this device is going to change my life.

Will keep you all posted as soon as I have a date. Hopefully it is soon!
Love Malia

Mi Cumpleanos!

June 30th, 2019

My dad and I had a great birthday bash together this year! I turned 11 years old on June 17th! We had such a great time and our theme this year was Pirates and mermaids! Almost everyone this year dressed up! I overall had a pretty good day.. A few seizures got in the way right before the big treasure hunt, but I managed to shake it off and particpate. The hunt took alot of preparation and planning. Roxy and my dad worked very hard on it. There were maps to be made, empty glass bottles to be filled with hints, and of curse the hiding of the treasure. Genesis Ella and Gabriella were on my team. We had alot of ground to cover to find the treasure.. During the hunt one of the hints were to find two presents and give to me. My team was showing me the map and hints and then off we would go to find another one. We finally made our way back to the house and Genesis found the hidden treasure by the pool! :) Inside were lots of gems, golden chocolate candies, mermaid key rings and tatoos! Roxy had made every single gift bag with cutout glittery sea shells that she drew and cut up! She is so talented! I love my Roxy. After the hunt we had to bust open the pinata, dad helped me swing the bat and I did good job hitting it! Ella had the final hit and broke the pinata open and out fell all the candy onto the ground.

Our dear friends Andy, Krystal, and Diego came to celebrate and helped all weekend with the preparations. They were such troopers my mom was doing a good job of bossing everyone around! Ha ha! Hoping this year is going to be one of my best years ever as I know as soon as I get the VNS surgery I am going to get better control of my seizures.

Love Malia xoxo

New girl

June 30th, 2019

We picked Roxy’s replacement. She started June 10th, Roxy would be training her all week and then Sunday was my big birthday party! For the most she did pretty good with me. She had no real experience in physcial therapy but my parents and I decided that if she was willing and had the desire to learn she would grow and gain her experience with me.

The following week when she was on her own was when things did not really go so well. She did not seem to obtain information from her week of training with Roxy. She did not talk to me the way the other girls did. I did not feel very comfortable with her. In short, she lasted three days. We are very grateful and blessed that we realized sooner than later that she and I were not a good fit. She left back for San Jose on Thursday. Mom had called Roxy earlier in the week and asked her to please come back and she said YES. It’s so good to have Miss Roxy back! She and I are a great team together. In my 11 years this is the first time a new girl has not made the cut. Roxy is so kind and sweet and is willing to stay on with us until the end of year and we are all very happy about that!
Love Malia

Roxy

June 1st, 2019

A few months back Roxy let us know that she was ready to move on and find a nursing job at a hospital. Roxy and I have built a great friendship over the last year and 8 months. She is so sweet to me and I know she loves me very much. We have lots of fun together and we have become quite the artistic team. There always comes a time for everyone to move forward in their lives and we understood that Roxy needed to begin her nursing career.

For the last two months mom has been doing interviews with different women to see who will be my new friend. We had hired one girl on the spot. She did a great job with working out with me. My parents decided that we needed to go back to working with a physical therapist. I need to be pushed and continue to try out new exercises. Cynthia was supposed to start on May 6th. It would give her three weeks to get everything in order and quit her current job. It was two weeks later when we received a call that she would not be able to accept the position. Her dad had become ill and she needed to take care of him and give him physical therapy. It was a bit of a shock. My parents were relieved that at least she did not take the position then have to leave here without us having a replacement girl. Sometimes things happen for a reason so we took that as a sign and back to interviewing more girls.

My mom had made the job description very detail oriented listing all the duties that come with the job.. We didn’t get as many applicants as before but we did have the opportunity to interview 4 more girls. Mom would first read their resumes then she would send to Maria Jose for a quick look over. The next step would be a video call and if that went well they would come out to Delicias and spend the day with me seeing what my daily routine entails. They would have to work out with me on the floor. Maria Jose was also speaking with them after mom’s first phone interview so that they could compare notes about each girl. We have two girls coming out in the next few weeks. We shall see who gets chosen to hang out with me!

I want to say to Roxy, thank you for loving me the way you do and for taking such good care of me. I know we will be friends forever and I wish you all the luck and the very best in your new endeavors.
Love Malia