Archive for the ‘Uncategorized’ Category

Roxy

Saturday, 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

Sunday, 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!

Sunday, 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

Thursday, 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

Thursday, 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!

Saturday, December 8th, 2018

Santa!

Saturday, December 8th, 2018

A trip to the city! (for fun)

Saturday, December 8th, 2018

Finally after all these years we are making a family trip into the city to have some fun! We left the house on Thursday morning and headed to San Jose. Today is the annual tree lighting at the Children’s Hospital. This makes our third year to go! The hospital always lets us go in through emergency and we get to go behind the scenes and sit right by the tree. Many many people come to see the tree lighting plus there is a huge show with music and dancers!

This year we cut it a little close, as I did have one last minute appointment at 5pm. We went to see neurologist Dr. Sittenfeld. He is the neurologist who knows how to calibrate the Vagnus Nerve Stimulator. Mom had spoken to the representative Gabrielle Cayama at Liva Nova and he had told us our first step in getting the device was to make an appointment with Dr. Sittenfeld. The doctor was very nice to me. Mainly mom was just filling him in on all the different types of seizures I have and asking if it would be possible to have the VNS surgery here. The doctor is going to help us and will be writing a letter for us so that maybe we can get the VNS device donated a mere $20,000 device! Dr. Sittenfeld said he would be happy to donate his services and time as well.. So fingers crossed!!!

We rushed to the children’s hospital and made it just in time to see the tree lighting! There are 25,000 lights on the tree, it is amazing to see when they turn it on! I was quite fascinated with it and of course getting to see Mr. and Mrs Claus.. They are always so sweet to me, Santa always whispers a secret in my ear! This year the local news came up to us and asked to interview us. They were impressed that we came all the way from Delicias just to see the tree!!

We had a great night! I was pretty pooped from the trip and all super stimulated from all the excitement but wouldn’t change a thing! It is our family tradition and a fun one!

The following day we went to the park that we always drive by and say we are going to go one day. Since I didnt have any doctors appointments we went and strolled around the lake and it was a gorgeous day and so nice to be out! Getting super excited as today my two best friends are coming into town to see me and we are going to the ballet!!

Love Malia

A Month of seizures

Tuesday, October 30th, 2018

NOVEMBER IS EPILEPSY AWARENESS MONTH! Proudly wearing purple the color for Epilepsy. What Malia has been through in the last two months has been almost unbearable to watch. Malia, our little bull, who has struggled with epilepsy since she was six months old has always battled the seizure monster. She’s has had decent control, but recently the seizure monster came back with a vengeance.
In six weeks she has been hospitalized for status epilepticus. ( seizure that will not stop after rescue meds and requires IV drip infusion of drugs). We have watched her suffer up to 200 seizures in one day. We have tried five different drugs. The CBD oil, seems to not be working for her anymore. What we thought was a routine 2 day visit in San Jose two weeks ago ended up being 12 days. We came home Friday, as Malia showed slight improvement with this latest new drug. We tackled the weekend fighting the seizures again and again. Thankfully Roxy was with us in San Jose and a big help during this time.
We are currently searching for the Vagnus Nerve Stimulator Device and hopefully will be able to buy it for her, a mere $15K. Her neurologist here is speaking with a Pediatric Neurosurgeon tomorrow to see if he is willing to do the surgery privately as she is not a candidate for it at the Publicly Funded Children’s Hospital due to the extent of her prognosis.
On a positive note, today she had one of her best days in months, the smile was there and the twinkle was back in her eyes. Little Bull, fights a very tough fight. She has our upmost admiration. She is a true warrior. She has an old soul and not only the tenacity of a bull but an OX.
Our family is stronger because of her. Our faith is strong, and our belief that good will overcome the evil seizure monster. Our will and drive to continue to fight for Malia will never falter. Please continue praying for Malia. She needs all the prayers she can get and to return to the control she had months ago.

Hanging Tough!

3 Little Birds for Malia

Sunday, October 14th, 2018

https://youtu.be/q8h9Ou8B6Tg