Malia Strong

February 29th, 2024


January 31st, 2024

We came into the New Year with quite a bang. Christmas was pretty mellow, we had a small group of friends over for Xmas Eve dinner and then on Christmas Day me mom dad and the dogs just chilled out together. We didnt have any family visiting us this year. My granny and paw paw normally would have been here but Paw Paw had quardruple by-pass surgery on the 7th of December. His surgery was a success and he is home now recuperating. I had a surgery coming up as well.

On January 4th, I had my VNS device replaced. The previous VNS battery was dying and not doing its job in helping me manage my seizures. It is a miracle that this happened.. Not sure if you remember or not, but my parents fought very hard to get me the VNS device. We had been turned down by the Children’s hospital here back in 2019 as I did not qualify in being capable enough to receive. My mom was not okay with that answer and she did everything possible to find the device and actually got the company who fabricates the device to donate to us. We had all wondered what would we do in 5 years ( the length of the device) but what we try to do every day is just take one day at a time.


November 30th, 2023

Happy Halloween

October 31st, 2023

Since I was a baby my parents have been dressing me up for Halloween. Over the years we have gotten the hang of putting on a pretty good party! For the first time this year my friend Gabriella will not be joining Genesis and me as she has moved to Spain for part of the year. We sure did miss her! It was a small gathering, mom and Cinthya did a great job decorating. Mom made all kinds of fun spooky food. This year we decided to be Hippies. Just after Cinthya finished getting me dressed the worst monster on Halloween showed up. The Seizure Monster, he won this time and mom had to give me an injection of Valium to get it to stop. Needless to say I was out for the majority of the party but I did wake up at the end. I could hear everyone talking and was listening to the music but just with my eyes closed. My friend Sofie came and her mom Belkis…. She has cerebral palsy and is in a wheelchair like me! We have known each other for a while. We had a fun time together and of course it was so great to be with Genesis. The Moore family and Cinthya dressed up like good ole hippies. Hope everyone had a good Halloween as well!

Love Malia

Bobath Therapy with MJ

September 30th, 2023

September Sun

September 30th, 2023

It has been a while since I have updated here…. Sorry as the time as we know it just keeps flying by… The last time I wrote it was about my big birthday party and about my new corset that is to help my scoliosis. So far so good on my corset. Sometimes Cinthya will put it on me when I am working out with her in the afternoons. The majority of the time I wear it at night and am able to wear it for six hours at a time. It really does not bother me, and I sleep very well in it.

We went to San Jose to get my official Costa Rica ID card and to renew my passport. That was a bit of a whirlwind. We got up early that morning and took the 9 am ferry across to Puntarenas that is where I was to get my ID. First place we went to they told us they had moved, then second place we went to they said was the wrong place, Waze sent un on a wild goose chase, 4th stop was the police station and they pointed us in the right direction and we finally found the place. Once we got there thankfully they allowed me to pass through the line and get started on id. After that we then had to go to the bank to get a stamp to make my birth certificate official it was a bit silly…. It was so hot that day, there was no parking, no handicap access. My mom went into the bank and it was packed with people! She asked to go to the handicap line as this was a transacation for me and the lady did not want to let her.. After mom took a picture of the van’s handicap picture, a pic of me in the car sleeping, and that we were out on the street waiting she finally let my mom go in the fast lane. Once she got up there paid less than a penny for the stamp, and was good to go! Seemed LOCO to go through all that for a silly stamp! Anyway we were off like a band of turtles and headed onto San Jose.

My Corset

July 30th, 2023

We made it back home with no problems!! I slept pretty much the entire way! The following day we tried on my corset and I stayed in it for 45 minutes. As a matter of fact, I even fell asleep with it on. It is not bothering me at all. The next days we put it on each time a little longer. My mom decided to try it on me at night in bed. I managed to sleep perfectly with it on for almost 2.5 hours. I am doing really good… Cinthya is very happy too, she actually worked out with me the other day with it on and I did really great!~ Hoping for the best!

Love Malia

San Jose Trip July 19th

July 28th, 2023

On Tuesday me and my mom and dad took out for San Jose.  We are on our own this trip as Cinthya is on vacation for a week! She definitely deserves a vacation, even though I know she misses me! We miss her too! 

Our mission for this trip was to retrieve my corset. Remember the video I put up? When the therapists came out to make the cast for the corset! Well it was ready to be picked up and tried on. The plan was to meet the therapist at CIMA Hospital on Wednesday morning to try the corset on and take a x-ray to see if my curve in my spine improves. 

The trip in itself was uneventful we pulled out from our house at 10:30 am for the noon ferry and we were at Price Smart in Santa Ana by 3pm. Mom and dad needed to do some shopping so we all went together. Typically, if Cinthya would have been with us, I would have stayed in the car with her. It was nice to go in and go up and down the aisles. I know my parents are always being careful and not wanting to expose me to a lot of people but being able to go inside the store and look at all the things and people really made me happy. I of course had my mask on! After that, we headed to the hotel in full on rush hour traffic…. It’s pretty crazy there and driving at that time is never fun! I went into a seizure just past the toll booth, thankful it didn’t last long. Nothing worse than driving down the freeway and having to pull over for an injection of Valium. We got to the hotel safe and sound, ordered some take out and were in bed early! 

That morning I had three seizures before we left for the hospital to get my xray. Unfortunately, it was day 5……. If you don’t know about day 5 that usually means I am going to have a seizure that needs intervention with Valium to get it to stop and a shot in my bum.. Not fun for any of us.  I was hoping that possibly today this would not happen. I sure did hear my mom praying for it not to happen. We left the hotel at 10:30 to meet Carles at the hospital. He was there with my new corset. After we paid for the exams, we were called back to the xray room. There were familiar faces that new me and were happy to see me. At one time, when I was much younger, I was constantly in the hospital and had made a bunch of friends. Glad that I was only there for a xray and nothing else! 

Once we went into the room about 30 seconds later I went into a seizure. A really really strong one that causes me to shout out, after about a minute it stopped. Then just when we were going to get me out of my chair to try on the corset it happened again. This happened another 4 more times. Finally it stopped after about 5 minutes. I still had a little jerking going on but it was now or never. Carles helped my mom put the corset on me. The lab tech gave my parents the robes they need to have on to prevent too much radiation and told my mom to hold my legs tight and for my dad to raise my hands over my head so they could get a good picture. Just then I made another hard seizure jerk. My mom looked at the tech and said hurry fast and get this picture taken. We got it done. Then by the time we got the corset off me I went into another seizure and both my parents knew that it was not to stop. My mom ended up injecting on me the xray table. It took another ten minutes before it finally halted. 

One could look at the situation that occurred in different ways. I know my parents were upset they hate seizures as so do I and I know it really bums them out when they have to inject me. On one hand, we could not have been in a better place than the hospital. This could have happened anywhere, such as on the freeway, in pricesmart, out in the parking lot. I know it is important to always look on the bright side of things and stay positive because if you do not you can become really sad. 

We went back to the hotel for a bit before I had to head out one more time to go and see the doctor. The same man, Carles, met us at the appointment. The doctor wanted to see me in my corset and if there were changes to be made that Carles could take it and make cuts at his office.  Our appointment was practically down town and at 4:30pm…. We made it on time and when the doctor saw my xray he was happy with the difference it made. My curve with corset on adjusted from 50%-35%. The goal is for me to wear it four to six hours a day! Carles did have to make adjustments and we were to get back from him the following morning before we left back for home. We headed back to the hotel and just as we were approaching the hotel room I went into ANOTHER seizure. This normally would never happen after having an injection of Valium only 7 hours before. It did happen and my parents did have to inject me another time as the seizure would not stop after 5 minutes.  My parents were super sad and frustrated that I had to go through this again. We don’t know the answers why, nor we will ever at least not here on earth. Just grateful that the seizure finally stopped and I was able to rest. 

The following morning Hannah came to the hotel with the corset we tried it on and it fit better. My parents were rushing around packing up the hotel room and getting ready for us to leave for the ferry.  Thankfully we had no traffic delays and we made the ferry on time. We arrived home around 6:30pm…. Mom took me straight to the shower… I don’t get the same kind of bath at the hotel like I do at home.. The water felt so great and mom gave me a little massage and stretched me out on the couch to relax, while my parents made my dinner. It was soooo good to be back home! 

Will be trying out the corset tomorrow! 

Love Malia xoxo

My Quinceanera

June 30th, 2023

Since about December my mom has been talking about my big 15 party! It has been four years since we have thrown a party for me and this year is a big one! The quinceanera signifes in Latin America, the entrance into womanhood and is celebrated as big as a wedding! My parents had talked about it and decided that we were going to have this party and celebrate my milestone of fifteen years. As you all know, the doctors said I would only live to be two. Celebrate we did! Of course you know with me, it is never a dull moment and and a few things did come up right on my big day. Let me tell you how it all began…….

Mom and Cinthya went shopping in December to find me the perfect outfit. I am really not a dress kind of girl so we were hoping to find something elegant and classy but in pants. They came back to tell me they had found it! It was holiday shopping so all the stores had their best outfits out for New Years and Christmas. It was beautiful, they found sparkly black pants with a gorgeous rose gold pink princess top, and mom found the perfect high top tennis shoes that were sparkly rose gold.It would be perfect for my day.  

After that the planning began…Since my birthday falls in June and sometimes it rains we decided a tent would be needed to keep the guests dry. Mom rented tables and chairs with table cloths and seat covers. We made cute tables out of pallets (thanks Pinterest) and bought some hail bays to put in front of the platform where the band would play. Since I love music, my parents thought it would be fun to have a live band. I also love lights so we hired a fire dancer to perform me! The guest list was long and friends and family were invited near and far. My parents wanted all of the people who have always been there for me and supported me. Our dear friends Holly, Ella, George, Janet, Karen, and Marco came from far and of course my granny and paw paw came with quite a few twists in their road but they made it ! We missed Grandma Marg, and my Pa Pa and Gammy, unfortunately they were unable to attend as well as many other family and friends but we knew they were there in spirit.

Ella and Holly arrived the week before. I was so happy to see them. Auntie Holly has always been so kind to me and has helped greatly with all my benefits. She and mom have been best friends for a very long time. You see Ella and I are kindred spirits. My mom and Holly were pregnant at the same time. Even though we live in two different countries we have always had a conncection. She truly is my best friend in the whole wide world. She is so kind and supportive of me. When we are together we connect. She listens to me through my eyes, she is always willing to help me. She and Cinthya have become really close too! She reads to me, feeds me, sings to me and says such nice things to me. She is what a true friend is all about. Just being there for you no matter what. Needless to say, I was thrilled to have her here with me for my party. It meant the world to me to have so many friends and family come to celebrate me. Genesis and Gabriella my Costa Rica BFF’s were there by my side. Uncle George came after 8 years of not being here and made the journey to celebrate me. Janet and Karen at the last minute booked and showed up for me! Thank you all!!!

As for the food for my party…. My mom literally 6 weeks before the party began cooking lasagnes… She made two kinds a vegetarian one and a classic meat lasagne. It was quite the process we had 75 people committed to coming! Besides the lasagne mom also said she was going to make the cake since there hasn’t been a birthday yet that she hasn’t made one! She made 7 lasagnes and 7 different layers of chocolate cake. All went into the freezer for the big day. Mercerdes was such a big help to my mom we could not have done it without her! And of course dad and Cinthya helped with all the planning too! Dad was in charge of logistics just like back in the day when he worked at Orca Bay! It was quite an event to put together! We asked the Twins, Laura and Lauren to cater the rest and make the appetizers, and Sangria. Mom found a lady in Cabuya who decorated my cake. Mom was happy to make them but she did not want the added pressure of decorating them! The cake decorator made a bunch of other yummy goodies to help make my cake table look and taste divine !

We had a decorating team with all my physical therapist who were coming to the party. Out of 11 physical therapists 9 showed up! Dr. Guitterrez my cardiologist and Dr. Mermelstein my dentist came from San Jose. Linda, Simon’s wife was my very first PT and started giving me therapy at one month old. What an honor to have all the wonderful people coming to celebrate me. Dra. Castro, my pediatrician, was unable to attend because she was out of town. We definitely missed her!

On the Wednesday before the party my mom got the sniffles. She had been sleeping with me with a mask on… She didn’t feel bad and was not coughing or real sick but………… in the dawn of my party at 2:30 am my mom hears me breathing very heavy and whimpering. She turned on the lights and touched me… I was on fire. She took my temperature it was 104.7!!!! This was cause for alarm. I have not had a temperature like that in many many years. The last time I did I was admitted to the hospital. My mom and dad immediately gave me something to reduce the fever then put cool cloths on me to help take away the heat.

We then called Cinthya and asked her to come over. It was the first time in almost three years since we have made a call to Cinthya in the the middle of the night. She came over right away and we began discussing the next steps. Our biggest concern was a seizure. If I went into a big one which would require an injection of Vailium things could go terribly wrong in seconds. Since a cold was brewing in me, I was beginning to have respiratory problems and buildup of phlegm. Giving me Valium could cause me to go into respiratory distress since I was sick. We discussed cancelling the party and we began to pack up the suitcases for San Jose. Cinthya stayed by my side while mom began to pack my suitcase and dad was in the kitchen packing up all my medical food, medicines, and syringes. I began to have a seizure but thankfully it stopped within a minute. In a normal child a fever over 104 can cause febrile seizures. Amazingly enough I had not had a single seizure in the five days that all my friends and family were here. That was a first in a long time and we were all just so grateful that the seizures had been at bay.

At 4:30am my fever broke. We all took about an hour nap.  At 5:45am Aunt Janet had texted my mom a double rainbow that was shining from my granny’s house. At 6:30 our friend Kristine had sent a picture of a rainbow just above the ocean. Something to say about the positivity of seeing rainbows on your birthday. It gave us all some hope that maybe things might turn around. We called the laboratory at 7am to see if they were open. My parents had decided the best thing to do was take my blood count and see what was going on. Mom had already talked to Dra. Castro, she was in Mexico, ready to read the results once we got them. The girl at the lab looked young and came to the car to draw my blood. I was asleep in my chair. When she went to make the first jab she did not hit a vein and I nearly jumped out of my chair. Mom was not so happy about that and let her try to find the vein but she had no luck. In the end, she pricked my finger and squeezed enough blood out for the exam. The results came back quickly. Dra Castro said it looked viral and not bacterial and the best thing to do was try to maintain the fever and keep me at home. 

The party was back on! It started at 3pm. We got home at 10:30 am, mom had left a message to the girls who were helping decorate on our way to the lab. When we got home there were people everywhere helping…. The twins were in the kitchen cooking, Mer was cleaning, Bismarck was setting up the floral back drop for my pictures and all the girls were dressing the tables and chairs and hanging decorations.  Jonathan, my new respiratory therapist came to the house to see me and gave me a 1.5 hour session of respiratory therapy. So grateful for him, I don’t think I would have left my room or been able to get off oxygen without him. He helped me cough up a bunch of phlegm. I was very tired and sleeping after that…. Cinthya started my lunch while I was sleeping in my bed and MJ showed up at 1pm to do my hair. It’s been a tradition over the years and she was very excited to do it. Mom continued to boss everyone around outside until 2:30pm….. Then it was time for us to get ready. Cinthya and MJ helped to make me look beautiful. Just like a princess…The guests began to arrive. 

At 3:45 even though I was asleep, they decided to take me outside so everyone could see me.  Mom put earplugs in my ear so it would not be too loud for me. Cinthya had picked out the song by Coldplay My Universe and my parents took me out to see everyone with that song playing. They always say to me that I am their Universe! It was a beautiful day everyone applauded me even though asleep I could hear the applause and most definitely feel the love. For some reason I just could not wake up… I was in a pretty deep sleep in my chair. Pictures were at 4:30 so even though I was sleeping my parents didn’t care and we were going to get our family photos in with friends and family. Tziru started snapping shots and all the therapists came and gathered around me as well as many others.

The party continued to grow and the band began to play. My mom tried to wake me up… Everyone was talking to me but I was not ready to open my eyes. But then at 5:30pm fifteen minutes before my dance with my daddy I opened my eyes big and bright. My mom started to cry. She was so happy I was awake. Me and Dad had practiced so long and hard for our big dance together. I had just been gearing up for my big moment. Rested and ready I looked at dad as if to say let’s do this! Cinthya went to get my stander and got me in position for me to be on my feet. Everyone gathered around and our song Just The Way You Are by Bruno Mars began to play. I was looking at my dad and he never stopped looking at me. Everyone was clapping and yelling my name… It was so special to me to have this dance with my dad, I didn’t want the song to end. Afterwards everyone was applauding us. My mom was beaming with pride. She came up and the three of us danced together. Of course, all my therapists wanted to twirl me around as well. 

From then on, I stayed awake for the rest of the party! Just before dinner Eli the fire dancer did an amazing show for me. He was so sweet and kind to me, and he is so very talented! Everyone gathered around after dinner to sing happy birthday to me and my beautiful cake was cut and shared with all. The party continued on a bit more and the band was in full swing, everyone was dancing and having fun. They played my song Three Little Birds. Such a great song to live by and everyone was singing it to me. Thankfully we did not worry that day. We left it up to God. He took care of me. He always does! There are days that are harder than some and that morning was most especially hard but we did it! As a family we can do anything together! We celebrated ME and all that I have accomplished and I have to say in the last 15 years I have accomplished alot! I am so grateful to all who came, for rainbows and birds, for all the sweet messages and gifts I received and for my parents for throwing me such an incredible party. 

Love Malia xoxo 

Daddy/Daughter Dance!

June 30th, 2023

It is tradition at a Quincienera party for the dad to have his dance with his daughter. My daddy and I had been practicing for over a month for our big day together! Dad picked out the song by Bruno Mar’s Just the way you are. The words could not be more fitting…. Since I have my new stander and am able to be on my feet we all agreed that the dance together would be in my stander. We practiced sometimes three times a week! Cinthya would get me ready and then we would play the song over and over until we both started feeling the groove! Dad had to practice spinning me around and holding my hand and of course practice not to let the wheels of the chair roll over his feet! Haha!

Each day we practiced the better we got! It made me feel so good to dance with dad. Something all girls love to do with their dads is dance with them. I felt so blessed to have the opportunity and love and admire my dad so much. He is amazing to me and I love him with all my heart. Cant wait for the big day to show everyone our moves! A little pic of me and dad on one of our practice days!

Love Malia xoxo