Archive for August, 2020

1 year anniversary VNS Surgery

Monday, August 24th, 2020

Today is my one year anniversary since my surgery! I am so very grateful for all who participated in helping me get the device donated to me, to Hospital CIMA, and all the doctors and staff who gave their time to me. Many people ask me often how is it working. The device has given me a 50% reduction in seizures. Having 50% less seizures a day is a great thing. We believe it has helped in many ways. Before the surgery I could have up to 6 or 7 a day. Now I may have one a day or somedays none, but then at certain times during the month 3 hard ones could hit me in the same day! I do know that I am better since the surgery and hopefully continue to get better seizure improvement every day!

Love Malia 🙂

Catch Up!

Sunday, August 23rd, 2020

hello to all my followers and forgive me for taking so long to catch you up on my progress and what I have been doing all these months. I decided to fill in the months that I did not write with pictures. Here I will bring you up to speed with all that has been going on in my life.

My last journal entry was about the benefit in November! I mean, it’s been a while since I’ve written it hasn’t been from lack of desire but more of time and that is not a great excuse I know! After having a successful benefit, we moved right into December without too many problems! We went to San Jose for our annual tree lighting at the Children’s hospital and we donated this year to their Neurology department. The show outside was great we were able to watch directly behind the big tree that was going to be lit in front of our eyes. I really enjoyed all the sounds, lights, dancing and singing.The flamenco dancers were my favorite! It is a special time for us to go into the city for this annual event. We met with the director of the Children’s hospital. She always receives us each year with open arms and a big smile. She is happy we make the 6 hour journey each year to see the tree and to continue to donate to the hospital. We love going, it is now a family tradition, and a honor to help the Children’s Hospital speciality departments each year! <3 The following day after the tree lighting, Krytal, me, mom, and dad went to the Gran National Theater in San Jose to see A Christmas Story! We went to the matinee had our usual box seats, (the only section that has wheel chair access) but they are really nice seats on first level! This was the first year me and my dad did not fall asleep! Ha ha! We all thoroughly enjoyed the music, dancing, and Christmas story! Afterwards we were headed back home to Krystal's when I went into a full blown hard core gran Mal seizure. Mom was in back with me and Krystal and dad up front. We thought the seizure would stop after a few swipes of the VNS magnetic but it didn't. It continued and continued. Traffic at this time of year in San Jose is similar to LA! It is CRAZY and we were in a very less desirable side of town that you don't want to have to pull over in.. My seizure would not subside. Mom was telling dad we are going to have to pull over. Dad was trying to find a safe place to pull over without getting hijacked. The stress was very high and I was seizing hard core. Finally which seemed like a lifetime to me and mom, dad pulled over right in front of the Clinica Bibilica hospital. He figured that if we can't stop my seizure now there is no better place but to be but parked out front of the hospital where there was lights and security guards patrolling. It was dark by then, mom was getting out the needles and Midazolam for my injection. She safely unbuckled me from my wheel chair turned me over in the middle of the van and on my side, found the injection spot with poor light and then proceeded to inject. Note that the seizure had already started 10 minutes before we found a place to pull over from traffic and feel safe. Time is always of the essence when trying to stop a seizure especially a gran mal. After the first 5 minutes of injection my seizure did not stop. We waited 5 minutes more. It did not stop. Mom went on to pull out second bottle of Midazolam and injected me again. It went on for another 10 minutes before it finally stopped. Thank you God for making it stop. We were so blessed not to have to rush into the ER at the hospital we were parked outside of front. Before you know it, we were able to move forward and get me back in my chair buckled in and headed for Krystal's home. It was an unforgettable night. My most favorite memory is the ballet, the singing, the family time together honoring our new traditions we have made here. The last part well..... seizures suck folks. The Seizure Monster tries to damper the spirit the happiness but we don't let it. It's the worse thing to have them happen to you and almost as bad to be the person having to witness them. But ... I made it through and mom and dad and aunty Krystal tucked me in and all was well. I went to bed with Christmas songs in mind and happiness to have the experience of being part of our family Christmas Story. It has never been a dull moment once I arrived in this world! 🙂 Granny and Paw Paw arrived right before Christmas and I so much enjoyed having them here with me during the holidays! We brought in Christmas and New Year's low key, we grilled and I watched my parents play Bocce Ball with my grandparents. It was fun, they are all definitely competitive! We were blessed to be spend time together! At the first of December Laura Bonilla, my new therapist, started to work with me. She graduated with her degree in Physical Therapy but had not ever worked at any clinics, she instead had been working at a bank for 6 years but her passion was to be a therapist. Out of all the girls we interviewed we selected Laura and decided no other time than the present to start working with her first patient which would be me! As my parents told her, if you can do PT with Malia everyday you can do PT with anyone! ha ha! It started off a little rocky but over these last six months together we have really developed a special relationship. Laura is very kind and sweet to me and we finally have our groove when we are working out together! She pushes me and that is exactly what I need! Naty my previous therapist came and spent a week with us in January and helped show Laura some of the exercises she used to do with me. We also got Irene to come and work with Laura and me once a week until Laura felt comfortable with me. February was laid back we stayed at home! One Sunday we went down to the beach to picnic with our good friends Nora and Luis, mom and dad says Nora makes the best fried chicken on the beach! We hung out with them until sunset and it was an awesome way to spend a Sunday. There were many weekends spent swimming in the pool as February is super hot. We had visitors Abe and Amanda from California here for a while. One Monday I went to the rodeo with my parents and Abe and got to hear the music and see all the lights. I met a new friend from Holland, Jeanel's mom. She was so sweet to me and brought me gifts. What I loved the most about her is that she talked and talked to me! It makes me so happy when people pay attention and talk to me, even though I don't talk back I do listen. She was great fun and we had a very nice afternoon with them! My paw paw Brown came down for a quick week visit and I enjoyed spending time with him. My buddy Genesis came over for Valentines and we exchanged cards as we always do! We are both artists and make card for each other! In all it was a great month! <3 In January, I had the honor to be the ring bearer for Mari and Alex! The wedding was in Turracares at their beautiful Finka. Mari is the older sister of Naty! My dress that mom had ordered for me on line was too small and we were in a crunch for time so Naty's grandma handmade me the most beautiful dress ever!! It was perfect and the rose opened up as it had a snap so we could feed me at the reception without having to lift my dress up. My parents could easily pull my hose that feeds me discreetly through the rose! The day could not have been more perfect, not a cloud in the sky and my parents proudly pushed me down the aisle and I carefully held their rings until I was called to give them over! I did a great job and it was a beautiful wedding. The reception was lovely and we had a grand time! My grandparents were invited as well so we had a family road trip for the weekend together and stayed at our dear friend Krystal's house! It was lovely in every way and feel so blessed and honored to have been given the opportunity and trust to hold their rings. <3 The first week of March, we went to to raise my VNS magnet intensity, see my neurologist, and pick up Grandma Marg. She was coming for her annual three week visit to see me and my parents. It was at this time COVID was just beginning to reach us here in Costa Rica. As a matter of fact, the day we picked up grandma was the day that Costa Rica had its first case of Covid. We tried our best to have fun with Grandma and not worry too much about the ever increasing and fast spreading Covid. Then the next thing you know the beaches were totally closed, driving restrictions enforced, curfews, and CR went on lockdown. To keep our minds off of Covid we started a family garden, we got to go to the beach once before it closed, and we made our annual cinnamon buns! CR for the first few months did amazingly well in keeping the numbers low. Grandma was getting more and more uncomfortable about the idea of flying back to Canada and then the next announcement was the Prime Minister saying all Canadian Citizens abroad need to come home! Grandma had just gotten here! She tried to go back earlier but there were no flights available so she waited until her return date to go home March 24. My mom had planned to fly to Texas for my cousin Tory's wedding on March 14th and be gone a week, that got squashed pretty quickly. Mom knew she could not travel with this virus out there and then have to be quarantined when she got back and not be able to be around me! My dad took grandma to the airport she left our home at 9am and she would not be getting home until the following day until 5pm. She had to cross through four airports to get home and in total was traveling for 37 hours. Grandma is one heck of a valiant traveler. With Covid looming everywhere we kept our prayers high that she make it home untouched by this awful virus! She did make it and she self quarantined and thank God she never got COVID going home from Costa Rica. Whew.... It was a stressful time and still is as COVID has become rampant in San Jose, thankfully out here where I live we have only 2 cases. We are still overly careful and cautious as I simply can not get COVID! The following months were pretty much lockdown, mom stopped going to the office and dad had closed the nursery for a while. The weirdest for me was not having my annual birthday bash with my dad! Mom would have been planning and cooking for weeks preparing for the big day! I turned 12 years old this year! My mom did make me a cake and invited by two best friends Gabriella and Genesis over for a social distance get together. It was nice to at least see them and hear their voices. I get to see Genesis more than Gabriella as she lives here on the property with us and is inside our social bubble. 🙂 <3 In July, we went down to my dear friend Karen's house. She was kind enough to let us stay at her place over the weekend and on the beach! Even though the curfew for the beach was 9:30AM we still really enjoyed being right on the water and hearing and looking at the waves! We managed to sneak in afternoon on the beach one day and played in the waves. It was fun! I slept alot over those days and had been having twitches in my hands and feet. Sometimes it can go one for hours and hours and it is very tiring. We were at the beach because we were celebrating 50 years of my mom! She had a really nice time,and we took Laura with us so she could help with me and that mom and dad could enjoy some time together! My dad did a great job spoiling my mom and making her feel extra special... It was a super fun weekend and it was nice to have a change of scenery! So now here we are in August, almost the end of it too! I have my ups and downs with seizures. Some days they can be just brutal and need to be stopped by an injection of Dormicum in my buttocks. My mom has gotten really good at giving shots. I wish she didn't have to give it to me, but sometimes it is the only way to get the ugly seizure monster to stop messing with me. There are some days I don't have seizures and those are my best days! I am so alert and active and happy. I have an entirely different look on my face when I have seizure free days. I am grateful for them, as before the VNS I didn't have seizure free days, except for when I first started CBD oil.. I then went six months without a seizure but that was a very long time ago. Miss seeing everyone... We won't be going home for a benefit this year. We had it planned to leave in September.The annual Lissencephaly Convention was going to be held at Morgan's Wonderland this year and we had plans to have the benefit the weekend after the convention. The Liss Convention obviously got cancelled, and since there is still no vaccine we can't get on an airplane and risk exposing me. We will have our annual tshirt fundraiser soon and next year we will hopefully be able to make the journey and go to Texas for the benefit and convention. Promise not to be gone so long... Much love to all. Malia <3