Malia Moore

August 10^th 2024

It was a typical Saturday for me! I love the weekends it is family time and usually me and my parents do something fun together. I like to swim, read books, get massages, and be in my stander. Today was one of my good days, I was perky and attentive. My granny came over and read books with me and my mom. We went for an afternoon stroll with the dogs and are usual sunset stroll around the property. One of my favorite things I love to do. Saturday’s are pizza and movie night and my parents had invited over my grandparents to join in on the fun. We did our normal routine of teeth brushing, pajamas, then get my dinner going.

I was casually sitting in my chair when at 6:15pm my eyes rolled into the back of my head and my eyes started blinking, my arms and legs shaking. My parents knew that this was not one of my daily seizures and mom went straight to my bedroom to get the rescue med (Valium). My dad got me on the couch which is hard to do when your body is shaking and twitching. Mom prepared the injection and gave to me after 5 minutes had passed. Any seizure after 5 minutes of not stopping must be tried to stop by giving the rescue med. We call this type of seizure Blue River. Not sure if you remember but 1.5 years ago, we took my grandma’s to Blue River for their 80^th birthdays. It was our last night there and CInthya was working out with me on the deck of our hotel room. I went into one of these types of seizures and it lasted 2 hours. The hotel called us an ambulance which was 1.5 hours away when they arrived it had just stopped. So hence the name of this type of seizure now is Blue River.

After the first dose of Valium was administered and 20 minutes had passed by mom gave me half of another vial, another 20 minutes went by and she administered the rest. These are emergency instructions by neurologist. The seizure would not stop, nor would it slow down. When mom went to get the third bottle I knew that this was not a good sign for me. Why was this happening? Why didn’t my medicine work, the VNS magnet, the rescue med?? Why wont the seizure monster leave me alone!!!

My parents can give me up to 3.5 bottles of medication but after there is risk of heart failure and respiratory depression. I heard my mom and dad talking. My grandparents had come over to be with me and pray for me. There was a lot of praying going on! The next thing to happen was call the ambulance and start preparing for a departure to San Jose. Cinthya was out of town mom had called her to let her know it was a Blue River.

I could hear my parents talking to me and telling me you can do this Malia.. Come on Malia, kick the seizure monster to the curb. You got this Malia. Then softly hear my mom praying and praying for God to make it stop. I wanted to beat it but I was having such a hard time beating the monster.  He would not let me go… As much as I tried and tried it wouldn’t leave me alone. Mom and dad started packing and the ambulance arrived just when Mom was giving me the last injection, she was able to give.  They were talking about how we were getting to San Jose. It was a weekend and night time. The doctor was calling pilots and none were answering. The only option we would have would be to go by the ambulance speedboat. This would take us just under three hours to make it to my hospital CIMA. There was no other choice we had to go.

Mom had talked to Cinthya and she wanted to be with me so she jumped on the back of a motorcycle with her boyfriend and they headed to Paquera where the boat would be waiting. The paramedic and doctor loaded me onto the gurney and into the back of the ambulance. My mom ran back in to double check they had not forgotten anything. Dad was outside doing logistics in packing the last bag in the ambulance. At this time granny came out to tell me bye and that she loved me. She grabbed my shaking little foot. I heard the words Malia I love you, and then in one instant my entire body just stopped shaking. My grandma looked at the doctor and said I think it stopped. He said your right it did. My parents walked out and granny said it stopped it stopped. Exhausted and physically drained I had managed to kick the seizure monster out. It took me 2.5 hours for me to kick it to the curb. It had a very good hold on me but I beat it. I like to think it was my granny’s soft touch and sweet words that helped me to stop it. I hate seizures. They are debilitating to me and so hard on my body. I can only thank God , my family and the doctors for being there for me and helping me in every possible way they could.

The doctor asked should we continue on our journey and the answer was NO. It was time for me to rest so they took me back out of the ambulance into my home. My mom and dad transferred me to my bedroom where they got me cozy and comfy. The doctor stayed awhile to monitor my breathing. We were all so happy it stopped my parents and grandparents crying with joy and relief. After the ambulance left, my dad managed to finish rolling out a pizza for them and my grandparents even after all the madness. They say he is the best pizza maker ever.

Thank you God, for looking after me. For letting me stay home.. I just ask you God, please keep them away. I know it is not easy with my brain being smooth but if you could just keep those big mean ugly type of seizures away, I would be forever grateful. Onward and upward I am not ready to give up fighting!

Love Malia

When I was just a wee little girl a mere 3 months, I met a young boy close to my age at Clinica Red. Linda Mermelstein, my very first physical therapist ,was giving therapy to both me and my new friend to be Gabriele. We had flown in that day from the Nicoya Peninsula so that I could get therapy. We do not live in the city so we had to take a small commuter plane a 30 min ride from the Peninusla into San Jose. I would receive my therapy in the morning and come back home that same day.

When we were leaving, Linda introduced us to Gabriele and his mom Marcela. From then on we all became friends. Marcela and my mom kept up over the years. I remember my mom sending Gabriele his first waterwaybabies neck float and swimming pool. I had so much fun in mine, Marcela wanted to get one for Gabriele. He loved the water and they used the pool and float as much as I did. Over the years, even though we did not get to visit them much my Mom and Marcela always stayed in touch and talked about me and Gabriele. I remember when mom and Marcela were talking about how to get Gabriele Cannabis oil to help him with his seizures like mine. I remember when they talked about the two of us and how much they love us and how they would do anything for us. Recently in November, Gabriele had his Gtube placed. For those of you who do not know what this means its a gastrostomy tube inserted through the belly that gives nutrition directly to the stomach. Gabriele had been on a waiting list at the Children’s Hospital for years. When he turned thirteen, like me, we were transferred to the adult hospital of San Juan de Dios. Gabriele had his surgery but he and his mom ended up staying in the hospital for many days and it was quite traumatic.

Finally Gabriele got to go home. Marcela and Dilson were happy to have him home and be able to feed him better as us Liss kids always have trouble swallowing! Sadly, the hospital only gave them one syringe and one connector to his tummy. This was very frustrating for them as trust me one syringe and one connector is not enough!!! My mom went to Texas to see my grandpa at the end of May and she was able to bring back thankfully to THE PARKER LEE PROJECT a bunch of syringes and connectors for my friend Gabriele!

On July 5th my mom got a late call from Marcela. Gabriele had gone into Status Epilepticus. (Seizure that will not stop) … It was late at night, they were not in their home but visiting family in Nicoya. Mom was talking to Marcela and trying to give her strength. We began praying for them. The next morning Marcela left a message to my mom that Gabriele had passed away. The seizure monster had won and Gabriele lost his long fight of 16 years of battling him. It was devasting to me and our famlily. In an instant my friend was gone. In an instant Marcela and Dilson’s lives were changed forever.

No words can describe the sorrow we all have for Gabriel’s family. Recently, we were able to celebrate Gabriele’s at my favorite beach Los Cedros. We lighted a lantern and sent it up to Heaven. It was a beautiful cermony. The only thing that gives me peace, is to know that Gabriele is with Jesus, that he is free from his earthly bounds and that he is running and playing freely in heaven. We will miss you Gabriele. You were a Liss warrior just like me. We were and always be kindred spirits.

All my love,

Malia

Last week we were in San Jose checking on my progress of wearing my corset for 6 hours a day. I sleep with it at night time. It really doesnt bother me. If it helps me to not get worse than I am happy to wear it. It had been nine months since I last saw Dr. Vargas. The appointment went really well I had not worn the corset for almost a month since my VNS surgery. We were hoping that did not change things too much. We were very happy to find out that my curve went from 75% to 30% ! Dr. Vargas said it no longer is scoliosis but a flexible spine, and he wants to see me again in October. We were all very happy with the news! Cinthya uses the corset on me when I get in my stander and also when working out together. It makes such a difference in the way that I sit in my chair. Besides seeing Dr. Vargas we also went by to see Guiselle my orthopedic therapist and she adjusted my wheelchair for me. She says I am growing like a weed! Starberri got to everywhere with us, she is such a good dog and really is well behaved! We had a good trip with no hiccups! Love Malia

Easter time always means, painting eggs and having an Easter egg hunt. It is also is thanking God for giving us his Son, Jesus. I am so grateful to be here and for God to continue to guide me along the way.

This year we decided to make our hunt and egg painting more fun and we asked various special needs kids to come. Cinthya my therapist sees many of them after she works out with me. We had a great time and a good turn out… I had fun being pushed around and found a bunch of eggs. The best part was to meet new friends and have community get together at our nursery. It was a fun filled day enjoyed by all!
Happy Easter to all.. God bless.

Love Malia

The morning after my surgery, I woke up to a very high temperature. I was breathing very fast and heavy and my oxygen kept dropping. Mom wrote to Dr. Zuniga, at CIMA, as Dra Castro was out of town. We have known Zuniga since I was a baby. We went to the emergency room at the private hospital and took xrays of my lungs and ran blood work again. It seemed that I had caught a repsiratory infection while in the other hospital during my stay there. Dr. Zuniga put me on an general antibiotic for 7 days hopefully to kill anything else I caught in the hospital. He told us to stay in town for three more days to see and to keep a close eye if things got better we could go home! Thankfully I got better and we headed home.

One week after being home, I had a seizure called status epilepticus. This type of seizure are the kind that are very very hard to stop. Mom gave me one bottle of Valium, then another bottle. After the second bottle and no signs of stopping an hour later they called the ambulance. The ambulance arrived. It was time to give me the third bottle of valium which needs to be monitored by a doctor in case my heart stops or I respiration goes so low I stop breathing. The doctor and paramedics were very impressed with the small hospital we already had going on at my home. We gave the third bottle and I was on high flow oxygen. The seizure stopped 2 hours and 15 minutes later. It was exhausting for all. My parents were already packing their bags for the emergency plane ride in if my seizure did not stop. Thankfully it did.

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 as well as the hospital and doctors service. 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.

On January 2 we travelled to San Jose and got settled in at the hotel. Mom called Dr.Villegas and he said we needed to be at San Juan De Dios, a public hospital in San Jose at 1pm. I was packed for two nights. One night for blood work and tests and the following morning surgery and then another night to monitor me. We were all a bit anxious. It was the first time to be in the ADULT hospital. I no longer was allowed to be seen at the Children’s Hospital anymore when I turned 13. I feel like I am kid, not sure why I have to be in the hospital with the adults. But… it is what it is and we were grateful to have an replacement VNS and that my doctor pulled strings to make it happen for me.

When we arrived Mom had to go to admissions, dad had parked the van an adventure as always) and was getting our our luggage. They sent me and mom to the wadrobe line where we were to get my gown. The nice man handed us a gown the size to fit a small elephant. Mom said that will not fit my girl and asked for a smaller size but there were none. So we opted not to change my clothes and wait with the other patients to be admitted. Dad came and met us and we waited and waited. Meanwhile, I had had a seizure a strong one but not a long one and also had gone to the bathroom. Mom asked where I could be changed the only option was the bathroom floor so we opted out on that choice too. Mom asked the nice gown man if we could use the changing room as there was a tiny bench that mom and dad could fanagle changing me on. They did a great job changing me in that small little room on that tiny little bench. While still waiting…….I had another seizure, and my parents were getting ansy as it was day 5 for me which means I am more than likely going to have to be injected to get a seizure to stop. Mom goes back to admissions and asks what is taking so long. My doctor had told us that everything was ready paper work in order and my bed was number 17. Admissions told her soon. An hour has passed and I had another seizure, mom went back to admissions this time getting one of the workers attention that we needed to be taken up NOW. Ten minutes later the patient assistant came down to get us.

Just as we were rolling into the Neurology ward and was talking to the doctor at the Nurses desk I had another seizure. This one was a doozy. Mom looked at the doctor and said please take us to her bed we are going to have to inject. So we went quickly, while I am seizing, in the salon that I would be sleeping in for the night. My parents always have an emergency supply of Valium in my medical bag in case this happens when out of my home. Once in the salon there was no curtain or screen and my neighbor in the ward was a 75 year old man and there was another older patient visiting him when we came rushing in the door. Mom tells the patient assistant that she needs privacy for me and asked for a screen to be brought over. Thankfully there was one. Nurses came up, the doctor, and mom just calmly said we have it under control. Once I was given the injection of Valium my seizres slowed down but continued for 45 minutes. The doctor came by to check on me and said that if I had a seizure like that in the morning the would not be able to operate. We assured him that would not be the case, God willing.

Once we were settled in and my seizure stopped dad stayed around until dark then it was time for him to go to the hotel and check on my puppy Starberri. Only one parent was allowed to be with me overnight. It was hard for dad to say goodnight and for me to see him go, but he promised to be there first thing in the morning to hold my hand before surgery. I was glad he was going to check on Star, as she is new to our family and I was sure she was scared too, all alone in the hotel. Just as I was dozing off to sleep the lab tech came in to draw my blood. Mom expessed I was a tough one to draw blood from, the young woman assured it would be okay. Well…. the first poke didnt work nor the second but the third one did. The tech had hit the vein but the blood was coming out slowly, she asked my mom to hold the vial while she kept pushing the vein for more… Mom was on her knees holding the vial and praying it would be enough. The the blood stopped coming and the tech said she “thought” she had enough blood for the exams required before surgery. Turns out she did not have a sufficient amount, and just before 10pm three people came in from lab. No one really wanted the job of trying to draw my blood. Two of the nurses had said no,, so one young man that was in the group said he would do it. While everyone was holding their breath, the young tech slipped the needle into my arm and hit the jackpot! Within seconds the vail was full and a sigh of relief was heard by all. Now hopefully me and mom can get some sleep. They had a pretty decent recline chair for mom next to my bed. My neighbor was asleep and the man visiting him had gone back to his bed in the other salon. The floor I was on was for people who had strokes and other neurological problems. There must have 30 of us in the ward. It was mixed women and men. Thankfully there was just me and my neighbor in our salon, he seemed to be a very nice man.

At around 2am mom was checking on me and see if I needed to be changed. Normally I do in the middle of the night. At that time all the light were off in our room. At the moment mom was changing me she had the sensation that someone was staring, she turned around and there was this man across the hallway looking in our room through the glass window. Needless to say mom was a little freaked out and stopped what she was doing and went straight to the nurses startion to tell them what was going on. They came and told the man he had to go to his bed and to behave himself. He went away and mom went back to changing me but then not a minute later there he was again. This time mom got very irritated and went back to the nurses station to tell them that it was unacceptable that some old man was staring while my mom was changing me. They came back again and told us they would take care of it. The next thing we knew, mom looked into the other salon and they were tying him down to his bed. Mom was a bit freaked about that and hope he didnt get loose and want revenge for having him tied up. Needless to say my mom did not sleep a wink that night. Matter of fact I heard on the phone mom talking with George telling him about all the craziness we had experienced that day. There were a few more interruptions through the night one woman screamed over and over again for help at the top of her lungs, at dawn the movement of the hospital awakening had all kinds of noises. I was just glad the night was over and we could move on with my surgery.

Surgery was scheduled for 8am but I did not get to go into surgery until almost noon. Dad had arrived bright and early to be with me but we had to wait. We never knew why we had to wait so long but we did. When it was time for me to go into the operating room we had to say goodbye at the doors mom and dad kissed me and wished me good luck. It is quite different being at the public hospital than the private. First of all everyone knows me at CIMA. Here no one knew who I am, and my parents would have typically been able to be with me up until they rolled me away to the surgery table. The surgery was supposed to take 45 mintues. It went 1.5 hour and mom and dad were getting a little anxious. Finally I came out the doors and off recuperation mom and dad got to see me roll by but they were not allowed to go into the recovery room. So many rules here at the public hospital. Of course they were both dying to see me. Finally an hour later I got back to the salon. I had to stay one more night before they would let me go, this time dad stayed with me and amazingly we had a peaceful night.

Overall, the experience was not so bad, we actually got better treatment than some. My neurologist was very kind to me and so were the nurses and staff on the floor. We were so happy to get out! Now it is rest and recuperation !

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

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.