VNS has arrived to CR!

June 30th, 2019

Mi Cumpleanos!

June 30th, 2019

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

update on vns

March 31st, 2019

During the time that my grandma was visiting we received the great news that CIMA would donate the operating room to me for my surgery! What emotion for us all. Mom could hardly believe it. The private hospital which generally is always about making money had told us YES! Yippee!!!! So exciting. Now the process of the application can begin…. It took a while to get everyone on board. Three weeks went by before mom got the letter from the Surgeon agreeing to do the surgery and the letter from CIMA saying that they would donate the room. Finally it came together and mom had everything she needed to send off to Liva Nova, in the United States. Keeping our fingers crossed that the VNS device get here soon and I can get my surgery scheduled.

Love Malia

good times with grandma!

March 31st, 2019

It is so awesome to have my grandma Marg here! She flew in all the way from Kitimat, Canada to see me. She will be staying with us for three weeks. I am sure we will be making cinnamon buns and having lots of fun. Grandma, like granny likes to read me books and hang out with me. We went to the beach a few times with her, and she and I got to watch COCO together. My grandma is so sweet to me and spoils me rotten.. We love having her here. Grandmas in general are the best ever!
Love Malia

February

February 28th, 2019

The month of February passed by in a flash. I had a pretty decent month. What bothers me most are the seizures. Since Liva Nova has offered to help begin the process of the donation of the VNS device my mom’s job was to find the doctors and a hospital to donate as well. In order for Liva Nova to donate they request the doctors and the hospital donate their services and operating. Since the device costs $20-$25K I can understand why they request everyone to come on board and donate.

Since I am Tica,(Costa Rican) my mom decided to ask the Children’s Hospital in San Jose. In Costa Rica, there is a social system where medical attention is free if paying your monthly quota. I have been paying into the system for nearly 11 years now and mom did not think it would be a problem to have the surgery done there! We also donate to them each year either to the Intensive Care or Respiratory Care department. You probably will remember I stayed inside ICU for 6 weeks while fighting for my life. Remember we donated a couch and nice chairs for the parents who have to wait outside of ICU since when mom and dad were there it was metal chairs. She called my neurologist who works at the Children Hospital and is on the neurology board. This is an ambulatory surgery that takes maybe 2 hours at most. My neurologist said she would speak to the board at their next meeting. They meet every Tuesday.

We were anxiously awaiting the news the following day and when mom called Dr. Hernandez she was not very happy when she hung up. Even though we had previously been informed that I was not a candidate for the VNS at Children’s Hospital for my poor prognosis, we did not think the hospital would tell us no on using the operating room even though we had the VNS device donated. It is always hard to take news like that. How could my life not be validated? Seizures can kill. Did we take no for an answer? No we did not.

The following day, mom made an appointment in San Jose, with the pediatric neurosurgeon. He was one of the doctors on the neurology board that had said no. We made the appointment so that we could see him face to face and that he could say no to my face. I was tired as we had just made the long trip to go to San Jose so when we entered the office I was sleeping. The Doctor was surprised to see us. We began asking questions as to exactly why we were told no. His answer was simple. He told us that we did not follow the rules. How do we not follow the rules? Basically we’ve been paying into the social service system of Costa Rica since I have been born. We do not however see doctors routinely there. Thankfully I have private insurance that covers my appointments. As with any social service, it takes time to make appointments, and one can wait hours to see a doctor. Bottom line is that it is not convenient plus I risk getting sick every time I go into any hospital. Hospitals with sick children everywhere is not the best place for me. The doctor was not happy that we were not being seen inside the Children’s Hospital. My neurologist I see outside of Children’s she also works full time during the week at the hospital. She understands why I don’t see her on the inside. Anyway, we did not agree with him and his reasons why. What difference should it make? We pay into the system, and by not using it frequently other children who do need it are better served.

After listening to all the risks of the surgery….Trust me, he would not stop talking about every possible thing that could go wrong. We also were trying to convince him that hey, my life is worth something and if I could achieve a 50% seizure reduction, it would not only help extend my life but give me a better quality of life. Mom point blank asked him would he donate his services and do the surgery for me if we found a hospital to donate the operating room. It took a few minutes for him to think about it, but finally he said yes. That was a pretty huge thing to get him to come on board and say yes to donating! At least he didn’t charge us for the visit which was very nice of him. So our new mission was to find a private hospital to donate the room. We had both the doctors, now we just need the place.

The following day, mom went to CIMA. You probably know through reading my blog that CIMA is my hospital. I have been going there since born and Dra. Castro works out of this hospital as well. Dr. Castro had spoken to the medical director about my situation but she did not get a real answer from him. My mom went to the office of the Medical Director and sat outside his office and waited for him to come back. When she met with him she told him the story. He was surprised that CHildren’s hospital had turned us down. He listened intently and said that he was not the sole decision maker, but to let him talk to the CFO and he would get back to me. He was a nice man and at least did not turn mom away. Mom left my picture with him so he would be reminded by my cute face! :)

We went home the following day with hope that we would be hearing back from CIMA soon.
Love Malia

January

February 28th, 2019

The month of January was filled with visits from my grandparents granny and paw paw Brown. There were a few excursions to the beach for some salt air and relaxation. I continue to suffer with seizures on a constant basis. In December right before Christmas, I found out that the company Liva Nova who makes the pacemaker of the brain (VNS) had said that they would donate the device.

My mom had been searching and calling for a month and talking to different representatives of the Epilepsy foundation she had told many family and friends what I was needing. One day granny called and said that my Uncle Rob had spoken to his neighbor Mrs. Sandy Black. Rob explained how terrible my seizures had become and that I had tried everything out there in regards to anti epileptic drugs. I currently take three now. It turns out that Sandy is the Vice President of the product modulation department at Liva Nova. Sandy told Rob she was going to try everything to make it happen that I get the device. The VNS device here in Costa Rica costs $25K. We were all so happy we were crying. Am so grateful to my uncle Rob for investigating for me and helping me to get this device..

The most amazing thing is that here in Costa Rica we have a pediatric surgeon and another doctor that can calibrate the device! So exciting, we hear from other moms that is has helped tremendously in the reduction of seizures and the intensity. Would sure be great if I could have less of them!

Keep me in prayers that it all works out smoothly.

Love Malia

Annual Christmas Tree Lighting!

December 8th, 2018

Santa!

December 8th, 2018