Malia Moore

May 2 2017
We headed out the door at 9:30a, and took the 11am ferry to San Jose Tuesday morning. I was receiving oxygen, recently my portable 02 machine has been acting up. It keeps over heating and turning itself on and off. We headed out the door at 9:30am. It had been raining all night. One of the first big rains of the season. The road to Cobano was so slippery we got to this one part in the road where we started sliding sideways toward the ditch. Luckily my dad has lots of experience in driving in the snow and kept us on the road. By the time we got to the ferry my battery was dead and the AC adapter to charge it in the car decided to stop working that day! The ferry guys know us very well, and thankfully they lot us park up at the front of the ferry and brought us an extension cord and we plugged in for the 1.5 hour ride and recharged my battery. 🙂

We got to San Jose around 2:30pm and headed to Emergency. Mom had already been talking to Dra. Castro who would meet us later in the day once all my exams came in. First we drew blood, then Rebecca an old friend and great respiratory therapist came in and worked on me. The attending Dr. in ER had listened to my lungs and was concerned with how they sounded. I was full! Rebecca did exactly what I had expected she took the small hose and went through my nose straight into my lungs and pulled out a large amount of phlegm. She also put a bit in a vial so it could be tested. Even though having to be suctioned through my nose is not fun and very uncomfortable, I did feel better after it was done. After that we went straight to the X-ray room to take pictures of my lungs and stomach. The first X-ray was not done right. When the ER doc looked at it she said we would have to repeat it. Back we went to the X-ray room. The second one came out fine.

By 5:30 Dra Castro made it down to check me out. My blood work came back perfect. Nothing was wrong with me there, the test on the phlegm for bacterial infection in my lungs came back clean. The Rhino Virus did show up and Dra. Castro said that was the cold I had three weeks ago! My X-ray of my lungs showed lots of phlegm but not bronchitis nor pneumonia! The picture of my stomach however was not good. I was so full of gas! Dra Castro said the gas was pushing up on my thorax and that was causing major discomfort and one of the reasons for gagging. All in all, the culprit for all this massive pain and discomfort is SIBO! Agh!

Having to look at the glass half full and not empty, we were all very grateful for there was no pneumonia, and no other viral infection going on with me. Now it was just time to tackle SIBO and that is not an easy feat. We went to our hotel we always stay at and decided that we would stay put in town for the week. This way if anything went wrong we close to CIMA. You don’t make that journey to turn around the next day, it was better to stay put and see how did that week.

My main problem was the gas and pain that sibo was causing me. I know this maybe too much for you to read but the only way besides taking gas relief medicine to get the air out is by inserting a small hose up my bottom. Yes, you just read that. My mom would have to do this four to five times a day and it worked. Air would come out every time she put it in. This was not comfortable for me but at least it alleviated me from the gas and it helped ease the pain. Naty was doing tummy massages two times a day I was still not sleeping and eating very little. We are slowly raising the speed of food intake and I am able to receive a little more. I am now on day 6 of taking Flagyl and of course I started to do weird things such as seizures. Practically every antibiotic has the risk of causing seizures and I typically am going to have more when I am on antibiotics. They always are different. I started lip smacking, and leg shaking, one night I had a grand mal. My parents were more than ready for me to finish my round of Flagyl.

Besides from all of this that was happening it was time for me to change my g-tube. In the hotel room one morning my mom went to change it like she always does but this time she could not get the water out of the ballon anchored in my stomach. She tried and tried and had no luck. Mom wrote to my GI Dr. Jiminez and she said she could help and come to the Children’s Hospital the following day. We arrived at Children’s at 1pm the following day and Dr. Jiminez showed mom how to burst the g-tube when it is plugged like that a very important thing to know living in the jungle! Once we were able to pull the water out the balloon came right out. Dra. Jiminez asked my mom if she wanted to put the new one in and mom of course accepted and with seconds my new g-tube was in my tummy! 🙂

Saturday I was making tiny improvements still doing weird seizure things from the Flagyl but was calming down and crying so much. My parents were giving Chloral Hydrate to help me sleep and I was at least sleeping a little bit. MJ had called my mom earlier in the week and asked if she could come see me! She came over Saturday afternoon and babysat me for a few hours while my mom and dad had an early dinner out with friends Krystal and Enrico. It was great to see MJ and she brought me a very cool gift, a tummy warmer. It smells of lavender and rosemary too! We had a nice time together hanging out and listening to songs.

Sunday we decided it was time to go home, I could recuperate at home and today was the last day of me taking Flagyl. Thank goodness…. We decided to take the 2pm and ferry and try and leave the hotel by noon. I was still taking oxygen at 1 liter and I woke up around 10:30am with a seizure. After the seizure I then got the hiccups which usually causes my oxygen to go down and we were having to worry about the portable oxygen machine!! It was time to make a decision stay another night or go for it and head for the ferry! Mom told my dad, what’s the worse thing can happen? We don’t make the ferry spend the night in Puntarenas and plug my 02 machine in to recharge fully. We went for it! We bolted out the door as fast as you can with all things I have and headed to the van and for the ferry!

We made the ferry! We didn’t run out of air and we were home by 5pm. Whew. So good to be home. Now it is about getting better!!!
Love Malia

It all started when one of the workers showed up with a cold. My dad was working alongside the man who was not feeling well (not Tio Bismarck) another worker and unfortunately my dad caught his cold. It really wasn’t a big cold for my dad he was over it in a couple of days and really did not feel bad. My dad is always washing his hands, and will even wear a mask if he even slightly thinks he is sick. This time the cold snuck up on him mainly because he never felt bad. Anyway,this is the exact reason why my family is so adamant about people that come over to wash their hands, and that workers do not come to work sick.

The day after Easter, I began to cough more and required taking oxygen. By Tuesday it was for sure I had a cold. Thankfully we have a small hospital at home and I can be taken well care of. We started with nebulizing treatments, cut back my food intake by half and respiratory therapy four times a day. A few days were pretty scary with me on 3L of oxygen, my heart at 145 and breathing was rapid and hard but everyone including me kept it together. It’s scary sometimes living where I do, my portable oxygen machine had been acting up and cutting on and off thankfully the last time we had a problem with the portable machine we bought a home concentrator. A very very good idea on my parents part! By Sunday exactly a week later I was better and actually off oxygen and my parents took me for a stroll that afternoon. I was smiling and things were looking up! I never had to take antibiotics and I was very proud of myself for shaking this cold on my own, and of course with the help of Mom, Naty and Dad.

On Monday, I started feeling sick again. I could not understand why I was feeling this way because I was finally feeling better Sunday! My mom could not understand why I was retching so much. She called Dra. Castro and she said it was probably because I had swallowed so much phlegm from being sick all week. She said that my stomach lining was probably irritated and this was why I was retching. ( I can not vomit since my Nissen surgery) Mom googles it and sure enough it can happen coughing and gagging all last week with all the phlegm has probably caused this new problem. By Wednesday, things had become worse. I could barely eat, the smallest amount of food made me feel sick. I had stopped sleeping as well. The week that I had my cold I slept for hours each day. All of a sudden my mom yells from the shower “I know what it is”!!! She jumps out of the shower and tells my dad and Naty, SIBO is back.

Do you remember when I had SIBO last year? It took over three months for the doctors to figure out I had it. SIBO is very hard to detect, especially in little people and also the main test is a breath test and #1 I can’t blow and #2 Costa Rica does not have this testing equipment anyway! My mom started piecing it all together. First the retching, then not being able to eat, no sleeping, excessive drooling (I am not a drooler), teeth grinding, constipation, lots of air in my tummy.. No it was not the phlegm causing this it was SIBO.

It turns out that over 50% of the people who contact SIBO have a chance of it coming back. It has been over a year since I have been sick, throw a little cold at me, let my defenses go down and bam, this hideous bacteria that likes to creep into my small intestine is back. It is a nightmare. My stomach is my kryptonite. You all know very well that I have conquered pneumonias,kidney infection, UTI’s back to back, two major surgeries, but mess with my stomach well it takes me down. Mom calls my GI, writes the GI we spoke to last year in CA, and sent Dra. Castro a video of me. Everyone is agreement, I am behaving exactly like I did last year with SIBO. Executive decision was made to start me on Metronidazole (Flagyl) for the next 14 days.

Antibiotics come with a double edged sword. They as well have a serious way of helping me and causing me all kinds of problems but at this point in time I will take anything to get rid of this pain. After five days of taking the ABX, I started feeling a little better. I was able to begin to eat a little more but I was still not sleeping at all! So you can understand how serious this was I eat by a feeding tube which I am fed by a machine that typically gives me my food at 210ML per hour. I was only able to receive food/water intake at 30ml to 40Ml per hour. Mom was stressing about me getting dehydrated because I had gone down to less than half of what I normally receive in one day. (I never became dehydrated) Besides from me still not sleeping the constant retching was causing me to aspirate saliva in my lungs. I was so tired from not sleeping that I was too tired to cough and my lungs were filling up with phlegm again. It is very hard to heal when you can not sleep. Dra Castro suggested that we try Chloral Hydrate again to help me sleep. At around 2am mom decided to give me a tiny bit, in ten minutes my 02 dropped from 92 on 1.5L of oxygen to 72! Not good! I was having trouble breathing and mom turned up the 02 to 4Liters! I stablized after 30 minutes and was able to turn back down the oxygen but it was very scary there for a moment.

By Monday evening the decision is made it is time for us to make the road trip into San Jose. My family is now worried I may have pneumonia, and since I am not coughing on my own I will probably need to have a deep lung cleaning by a professional respiratory therapist. What does that mean? It means after the beat on my chest and back for 20 minutes they will then follow by sticking a long slender hose down my nose and into my lung to pull out the phlegm. We will be leaving our house at 9:30am Tuesday morning to catch the 11 am ferry and head to emergencies to see Dr. Castro. I just hope I do not have to be admitted!

Love Malia

Easter Sunday I slept pretty much all day. We had Bismarck, Mari, Javi, Ire and my two buddies Genesis and Gabrielle over. I wasn’t much company to everybody as I was very tired and sleepy that day. I also was beginning to sneeze a bit. My parents cooked a ton of food and we had a nice time together. Genesis made me the sweetest Easter card ever. Am so blessed to have so many friends and family that care and love for me and most especially Jesus. HE went through so much for us all.
Love Malia

Easter Egg Painting Tradition! Every year me and my friends get together to paint Eggs! This year we included an Easter Egg Hunt and it was much fun! It doesn’t matter how old you are;everyone loves to paint some Easter eggs! It was very hot but we started close to 4pm so we would not be looking for eggs in the extreme heat we have been having. I had fun with my friends and I especially loved running around the property with Natalia searching for the eggs!
Thanks everyone for coming.
Love Malia

March 26th was Epilepsy Awareness Day. I had some tough seizures Saturday night, but I managed to smile and have a good day on Sunday. I went swimming with my parents in the afternoon and had such a good time! It was great to be floating again. Seizures are terrible, debilitating, mean, and flat out wear me out but they can not rob me of my smile or my will to live. Cannabis has had a huge part in helping me kick those seizures to the curb and has kept me smiling. Life is unpredicatable and so are seizures. I just received some new oil (a different type) that we will add to my existing oil of Haleigh’s Hope. We are praying this new oil will help minimize the seizures I have been having at night. To all my friends out there who suffer with epilepsy I am with you. I understand. Here’s to finding a cure.
Love Malia

Last night I was having trouble sleeping. Slowly but surely I begin to drift off to sleep when this volt of electricity comes rushing through my body. It lasts only for a few seconds but it does not promote good sleep. Finally my body drifts away into sleep land. At 1;15am I awake again, frozen. I could have been in the movie. Frozen are my arms, legs, eyes, for 25 seconds when the seizure monster lets me go. I take a big breath in look at my mom and then the spasms begin. One after another after another. Arms and legs twist to one side. Within 5 minutes my body has had a total of 85 spasms. They are happening every second. The oil helped bring the spasms down but they continue on…. So the next step is use valium rectally. This usually will stop them in about 5 minutes. The seizure lasted a total of 25minutes. I drifted back off to sleep. At 3am I am at again, frozen. Mom gives me oil, and this one is not as strong as the last one. The spasms are not as intense but annoying either way. The seizure monster will not leave me alone. Again the oil helps but does not stop them so again a small dose of valium is given. Finally back to sleep again, the seizure monster has left me wiped out. I didn’t fully wake up today until 1pm.

Natalia came to work early today. She has the patience of a saint. She stayed by my side all morning while mom was out working. The rest of the day I was exhausted, the heat here right now is killer. The middle of the day it gets up to 95 degrees, I am the only one in the house who has air conditioning but we don’t stay in my room all day! It sure is nice to sleep in it though! Natalia got some action out of me late this afternoon once the sun started to go down. I am still weak though for the seizures that are attacking me. I pray I have some peace at night. Please let the increase in oil start working better.

Love Malia

The time spent with my grandma’s was incredible. Since neither of them live here full time the time we do share is so special. I was sad to see them go but do know that time flies by quickly and we will see each other again soon. My seizures coming off the Sabril has been awful. At times, I think my body is adjusting to the change but then a Gran Mal seizure will come out of no where and knock me to my knees. You may think all seizures are the same but they are not. The Gran Mal is the worse. They typically happen when I wake up. What starts with my arms frozen in the air stiff as a board turns into a gran mal where my body begins to violently shake, my breath is taken from me and I begin to breathe with severe difficulty, my eyes roll back into my head and I am gone for about 15 to 20 seconds. Thankfully they don’t last longer than that but those few seconds that my body it contorting and twisting I will be pretty much knocked out for the rest of the day. That means no fun for me. No physical therapy , no strolls, just sleeping and being exhausted all day.

So what are we doing to try and combat these awful, horrible, debilitating seizures? We have increased my oil. I am currently on only one pharma drug, which is an amazing feat in itself. The increase in my oil is showing slight improvement. The fact of the matter is that the Sabril and no longer having it in my body anymore has caused this increase in seizure activity. I am only ten days off the medication and we are hoping after one month things will normal out. Until then I am just going to keep praying that the seizures stay at bay and I ask if you are reading this to say a little prayer for me too! Without seizures I am doing great! Hoping to return to my active happy self really soon.
Love Malia

I am so blessed to have both my grandmother’s! Granny that’s my mom’s mother was the first in line to come down to visit me! She stayed here a month and we had much fun together. She likes to read me books and help Natalia with my therapies. We had so fun adventures and we went to the beach a few times, swam together, and went to Miguel’s one afternoon. A few days after Granny came Grandma Marg flew down from Canada and she is here with us now!

Grandma Marg is the known baker of the family! The first thing we did was make Valentine cookies with Genesis for Valentine’s day and today we are making her most famous cinnamon buns! I always like to help be a part of making these yummy treats! Even though I don’t actually eat them it is fun to make them with grandma! We have had fun with grandma too! She as well reads to me all the time, and almost every night she feeds me my supper!

So blessed to have so wonderful strong women in my life.
Love
Malia xoxo

Yesterday was a fun day! We went to the beach to celebrate one of my best buddies Genesis. Genesis, is Bismarck and Maritza’s daughter. Bismarck has worked for our family for 16 years. Genesis was born 5 months before me. She is tall like me but she is much darker than me! Everyone jokes about us being rice and bean, me being the rice! Ha ha! Genesis has a very sweet manner around me. She cares for me and that makes me feel really good inside. The party was very nice lots of friends and down at our very beach spot Los Cedros. Natalia of course went out of her way and made the most spectacular piñata ever! It was a palm tree and I helped supervise her making it! I took a cat nap while at the party, I could not help it! The sound of the ocean and salt water air made me sleepy.

I can’t help but think sometimes if I had the capability to run and walk like Genesis we would be running all over our property together. Instead we hang out at my house and do projects together. She is a good friend and I am lucky to have her in my life. Happy Birthday Genesis, wishing you many many more.

After the birthday, we went to Dona Karen’s house for a dinner party! Mom put my feet in the pool and we chilled for a bit talking to our friends and catching up with everyone. It was a fun filled day, we stayed and had dinner and then headed home! Of course you would think I would have wanted to have gone to sleep after such a long day of sun and fun, but no I was wide awake until midnight! Finally decided to close eyes…. I had a pretty good night, minus a couple of seizures.
Love
Malia