Malia Moore

On Wednesday morning mom scooped me out of bed and we took off for San Jose. Our group Dad, Aunty Kathy, and Naty. We were off to see Senator Alfaro, he is the VP of Congress and he wanted to meet me. Costa Rica is very close to legalizing medicinal cannabis. The Senator wanted to hear my story and how much Cannabis has helped me. It has reduced my seizures drastically up until one point we went four months seizure free. I now don’t have to use Diazepam to stop my seizures I simply put a drop of oil under my tongue. I had tried countless of other seizure drugs with terrible side effects none of them helped me like my oil does. Thankfully I was able to get off one of the drugs I was taking it did horrible things to my pancreas and kidneys. Aunty Kathy was even able to speak to the Senator. She told him she only wished she had had the opportunity to use the oil, that maybe if she had Lindsay would still be with us. The bottom line is Seizures Kill and less seizures means longer life. So why in the world would you not approve a plant that God put on this earth to heal us????

So I am hoping to make history here in Costa Rica. I hope I can convince those that don’t believe. As my mom told the senator, what parent would not want there child better? Cannabis has made me more alert, I smile now all the time, it has given me better quality of life. We will be going back in two weeks to speak with more Senators. Keeping my fingers crossed we convince them. Besides, how could you not want to help me?
Love Malia

Today my friends came over and we finally made headbands together! I have had this project in my closet for over a year! It was much fun we each made our own design. I was in good spirits that day and Aunty Kathy was here visiting me and she had just as much fun as I did! The girls went swimming in the pool after we finished our project it was getting late in the day so I did not get in the water. It really made me happy to have all my friends here!
Love Malia

Why Does G-d Create Severely Handicapped Babies? By Aron Moss

Question:

A friend gave birth to a baby with a rare condition that has rendered her severely handicapped. She is not expected to live much past her tenth birthday. I just can’t understand why G‑d does that. If life has a purpose, what is the purpose of such a short and sad life?

Answer:

Every birth is a gamble. A soul enters the world innocent and pure. But it may not stay that way. This world is a maze of diverging pathways, both good and evil, and the choice is ours which way we go. Once a soul enters a body, it is free and therefore vulnerable to corruption. While acts of good elevate the soul, every act of evil makes a blemish on the soul.

Some souls are so lofty, it simply isn’t worth the gamble. These souls are too precious to risk being compromised by life in a body. They are too high to come down to this world. But the other option, not to be sent down at all, to never reach this world, would mean that we would miss out on meeting these holy and lofty souls and hearing their message.

So these souls do come down. But in order to be protected from the potential evils of an earthly existence, they are sent down into a body that will not compromise their holiness. They enter this world in a form that is above sin, above evil. From a purely physical perspective we call them “disabled” or “handicapped”; from the perspective of the soul they are protected. They will never sin. Their sojourn in this world is often brief, and in terms of this world may seem sad. But they have retained their purity. And they have fulfilled their mission.

These special souls remind us that true love doesn’t need a reason. We often love others for what they give us — we love our children because they are cute, smart, and high achievers; we love our spouse for the pleasure and contentment they give us; we love our parents because they care for us. This is love, but it is not pure.

When a child is born that will never achieve worldly success, cannot provide the usual source of pride for her parents, all extraneous reasons to love her fall away and what’s left is the purest love that there can be. These children are lovable not because of what they do for you, and not because of what they will one day become, but simply because they are.

These pure souls remind us what love should be. Only such a pure and holy soul can elicit such a pure and holy emotion. We can only stand in awe of them, and the parents and friends who care for them. And we can only thank them all, for giving us a glimpse of what true love really means.

Easter time.. Always a time to reflect for what God has in store for us. Hope, Heaven, Jesus, renewal of faith. There are many times I know my parents struggle with the why, what for, not fair, unjust things that happen to me. I hear them talking, I know they are scared at times and angry at times for all that I go through. BUT, I also know they BELIEVE for without belief and faith what would there be? There have been so many times that I have been so close to moving on from this world, but God has a plan for me, and my parents. There really is no need to question why? I am a pure soul, an angel from heaven and hoping to show you all just a little glimpse of what it means to truly love. In the time that I have here on earth I hope I open your eyes and your heart to see how we are all one and the same. How even though I may not talk I understand what you say. I speak with my eyes, I hear you, I love life. I am happy and what means more to me is when you talk to me, look at me, and try to understand me.

A few weeks ago another sweet angel was lost to the heavens. Cyndimae had Dravet Syndrome and struggled with seizures all her life. Her mother Susan, fought tooth and nail for her daughter to receive medicinal cannabis. She passed on March 13th in her daddy’s arms a seizure took her life. It is times like this that we can all question as to why but only God has that answer. She was a beautiful soul and although I did not know her personally I know we are kindred spirits. You sweet smile will be missed down here.

Happy Easter, it truly as a day to appreciate the sacrifice God made when he let HIS only son die for us.
Love Malia

The first two weeks of the New Year went okay. Thankfully I have the great light up spin lights that grab my attention and distract me sometimes from crying. We have gone through a few of them recently.. Unfortunately I am still not comfortable. I have a hard time sleeping. I am crying a lot. My mom and dad I know feel so helpless. I can’t tell them what is bothering me. I feel helpless sometimes too because I want to tell them but I can’t. So my parents have to play the guessing game with me and the doctors to try and figure out what is wrong. It is so hard sometimes.

On Saturday the 15th of January, me granny, Natalia, and mom headed into San Jose again. It was time to do another round of testing. Because I was crying so hard and screaming out in pain we did an ultrasound on me and looked for pancreatitis, kidney stones, infection of kidney, and general swelling of abdomen. We ran every blood test there is and we took stool samples. The ultra sound went great. Nothing wrong there. The blood work came back perfect no signs of infection.

We found a great weekend deal at the Residence Inn, it was very convenient as it is across the parking lot from my hospital CIMA. Mom finally asked Dr. Castro if she could recommend a sedative to give me so that I could sleep and my mom and granny too. Being at the hotel and screaming is a bit different than being at home. When I go into these moments of crying which at sometimes last for hours I sometimes actually stop breathing from crying so hard. Nothing can deter me from crying when I am in this hysterical moment. Why can’t they figure something out? So that night mom gave me Chloral Hydrate,it worked I slept for three hours. When I woke up crying mom took me outside at 4am and strolled the Boulevard with me until the sun came up. Interestingly enough, When we walked out the front doors of the hotel there was this strange man sitting on a bench. We couldn’t make him out very well as he was further down from the hotel We decided to avoid him completely and only walked up and down the right side of the shops. The street was lit up and we were in a shopping area so we were the only ones out on the boulevard window shopping. There was a guard at the top of the street by the hotel so we felt safe. We both cried that night,Mom from frustration of not being able to help me and me from being tired of being in pain. The weird man on the bench never moved and he always kept staring one way…. Mom and I a couple of times peered around the corner to spy on him but he never budged. When the sun started to rise above the mountains at 5:15am we then gained courage and decided to go check this weirdo out! We crossed the road and went to the other side, and there on the bench he sat still staring in that same direction! Well….. guess who it was?? It was a man with a chicken on his head made out of LEGOS!!! Yes a LEGO man! Mom started to laugh so hard and I was crying and so there we were laughing and crying together with the crazy Lego man! Out of all this sadness and misery at the moment there had to be some humor! We strolled back into the hotel, and the front desk person was nice enough to put some cartoons on for me at 6:00 am so we hung out in the lobby until 6:30 until Granny was calling the cell phone in a panic wanting to know where in the world we were!!

The following day we took an X-ray on my tummy again. The X-ray showed extreme amounts of gas and distention of my colon. A very good reason for me to be crying out in pain. The gastroenterologist had upped my Miralax and I was taking it three times a day. It was looking like the Miralax was the culprit of my pain and for causing me to have so much gas. Dra. Castro told me to stop the miralax and start taking Lactulosa another form of laxative. Since I stopped the miralax I began to calm down and started sleeping again. We took that as a positive sign and that Miralax was the culprit to my problems. We decided to head back home on Tuesday.

By Thursday, I began crying, grinding my teeth, and gagging again. 🙁 Dra. Castro suggested we come back and do a gastric emptying study. This is an exam that uses nuclear medicine to determine how fast food leaves the stomach. It will take 5 hours to do the exam. I have to have an empty tummy and thankfully the Ultrasound doc, Dr. Ramirez made room for me and squeezed me in for the study on Tuesday. We were home for less than a week when we loaded back up and went to San Jose again. Me, Granny, Naty and mom loaded up me and ALL MY THINGS and off to San Jose we went. My mom promised me we would not be going home without better answers.

The Gastric study showed that I digested my food very well and that everything was normal until the end when the food reached the end of colon the Dr suspected I may have Hisrshsprung Disease. Hirschsprung’s disease is a condition that affects the large intestine (colon) and causes problems with passing stool. It is caused by chronic constipation. Looking at the symptoms we thought for sure this could be it, but in the end it was determined by three different doctors that I did not have it. At one point we were relieved because we thought we finally had an answer to my agony but no…. we must continue to keep on looking.

Next study was an Endoscopy. An Endoscopy is a nonsurgical procedure used to examine a person’s digestive tract. Using an endoscope, a flexible tube with a light and camera attached to it, a doctor can view pictures of my digestive tract. This was scheduled for Saturday at 10am. I would have to be sedated pretty heavily and so mom and me and Naty headed to the hospital. My mom was able to be in the surgery room with me and she watched the entire exam. I did great. The doctor and nurse in the room were very impressed with me and how well I behaved. I am such a good little patient! 🙂 The Endoscopy showed slight gastritis,inflammation and irritation of the stomach lining. My tummy showed it was very red. We then decided we may have found the answer to my problems with this gastritis which can cause a lot of pain and discomfort. We got back to the hotel and MJ came to see me and brought me new books to read. It was great to see her, my first therapist Linda came by to see us as well. That night I was very uncomfortable and cried a lot but it was expected as I had just had a tube rammed down my throat and into my tummy. The doctor told us to double up on Nexium and we also have me eating only a premade formula for children who can not tolerate any foods. This is a bummer as my mommy always cooked me the most delicious and yummy meals for me everyday.I have lost 10 pounds during all this drama. Since we found out that I had gastritis we decided to head home on Sunday and see how the week went at home. Staying in hotels is definitely not any fun and mom promised me Naty and Granny that she would take us girls down to the beach when we got home. My mom kept her promise we did go to the beach, dad came down at lunch and cooked up some hot dogs and we had a nice day.

It is the oddest I thing, I always seem to get better in San Jose we begin to feel comfortable that we have found the answer to my pain and suffering but then when I get home usually 36 hours later it all starts up again. My mom has reached out to two doctors in the USA hoping for help to see if there is something they are missing here. My problems are stemming from my stomach. There are only 3 pediatric gastroenterologist here in CR and I have been to all three and to be honest we really aren’t impressed with any of them. So mom sent all my information to a pediatric GI in California. My crying is getting worse. I am now having to sleep every night with a sedative as without it I would only cry and we have to get some sleep. I feel like I have ants in my pants. I kick and scream and cry out. Nothing calms me. Strolling around does a little bit… if I am not moving I am not happy. My mom is calling the GI in Costa Rica and she says it is not my stomach. She says it is my brain. I could possibly have central irritability. My mom, keeps insisting to her that yes it is my stomach. My lissecephaly is not causing me to behave like this no way.

February 6th my mom dropped my granny off at the airport. We were sad to see her go. She has been such a big help. I was grateful to have the time with her. Granny has lots of patience and she tried and tried to soothe me. Love my granny..It has now been ten days since I have been home and it is time to go back to the city because the crying and pain is uncontrollable. I am grinding my teeth my number one sign of something bothering me and I have begun to have nauseas again. While packing up mom took our passports and warm clothes with us as my parents were thinking that if we did not get an answer on this trip to San Jose we would be flying to the USA for further testing. We loaded up the car and off we went for the 2pm ferry.

Mom decided to go ahead and see my neurologist. We went straight from the ferry to her office. Natalia had to take me outside and push me up and down the hallway while mom talked to Dr. Hernandez as I was crying so hard they could not hear each other talk. Dr. Hernandez was surprised to see me this way as I have never been to her office like this I am always a very mellow kid. I don’t scream like this for no reason! The GI works at Children’s Hospital and she has spoken to my neuro. She as well told the neurologist that she thought is was my brain causing this behavior. Mom kept insisting to both it was not. We planned to do an EEG since I had not had one in a long time. The appt with the neuro was uneventful. We did not get any new answers. Just speculation that it might be my brain. The GI at this point is trying to convince my mom that I should be admitted to the Children’s Hospital so they can “study” me further. Mom didnt like this idea one bit. Admit me in a hospital full of sick kids to study what?? We have done every exam out there and I have a greater chance of catching a bacteria inside that hospital then by staying out.

Mom called my dentist the next day. We had not checked my mouth. Maybe I had an abscess that we could not see? Dr. Mermelstein checked me over and congratulated me on my great dental hygiene. Nothing there, my mouth checks out fine. Off for the EEG. I did really well for the tech who ran the EEG. My test came back unbelievable. My EEG which is normally a complete mess with big black spikes going up and down the page was now small beautiful little brain waves. Amazing. Thank you CANNABIS. It is this plant that GOD put on this planet to help cure illnesses and stop seizures that has helped me to have a EEG look like this! I have had 5 EEG’s in my short 7 years and not one has one ever looked so good. My neuro was shocked she couldn’t believe it either. In all this time of crying and being in pain, my seizures have actually calmed down and I haven’t had any in over three weeks. 🙂

Next appointment is the allergist. We must rule out allergies. We tested every single thing I have eaten….. I had to get the patches put on my back and wait 48 hours before the Allergist could take them off and check out if I had any sensitivities. The only thing I showed allergic to was sweet potato and I did used to eat that every day, but the doctor did not suspect that the sweet potato was causing my grief.

Mom has been conversing with the GI in California via email. She suggested we study my poop for procalcetina. They don’t test for that here so if you can imagine the lab packed up my poop in dry ice and off to a California lab it went. It would take 2 weeks to get the result back. The GI in Costa Rica, had suggested that I test my poop for sugars. Low and behold, after all this time the test comes back very very high in sugar. The GI here says I could be lactose intolerant. Mom tells her I don’t drink milk and never have so……… the only other thing it could possibly be is SMALL INTESTINAL BACTERIAL OVERGROWTH(SIBO), defined as excessive bacteria in the small intestine, remains a poorly understood disease and hard to detect. Symptoms for SIBO: abdominal pain, gas, reflux, nauseas, constipation, diarrhea, bloating, abdominal distention….. Everything single symptom I have. In Costa Rica, there is no way to test for it and even in the states it only done by a breath test so many times false negatives occur.

How did this happen? Well, remember when I had the bronchitis, and then the UTI? I took antibiotics for almost two months. Those antibiotics which were to help cure me also killed all the good bacteria in my stomach which than lead to an overgrowth of bacteria in my colon which then creeps up into the small intestine. These bacteria cause havoc in my tummy and caused me to have so much pain. The only way we could know whether or not I had SIBO was to take a gut antibiotic, and so it is ironic as antibiotics are what put me in this position and now I must take them again to kill the bad bacteria in my tummy.

After 36 hours mom and Naty began to see improvement. I am sleeping! I am not howling in pain we are seeing IMPROVEMENT!!! I took Metronidazole for 21 days. I don’t like taking antibiotics at all, and they do cause pain and discomfort to my stomach but I had to take them. Mom made a Skype appointment with the GI in California, they were to speak for 30 minutes about me and my upcoming plan. The GI only wanted to charge us $800 for a 30 minute call! My mom was like are you kidding me???? Seriously? You are not going to even look at or touch my daughter but yet you want to charge $800 for a phone call??? Geez…. You must be kidding me. We paid $350 the squeaky wheel gets the grease. The Skype call went well and we did learn of a new probiotic that I would be taking that is only available in the States but is supposed to be the best ever on helping reconstruct the good bacteria in my tummy. VSL #3 is the probiotic, and thankfully we were able to organize getting it down here to me. After 10 days at the hotel we are finally now going home. MJ came to see me on my last night and we had a pajama party and she and I slept together and cuddled and hugged all night. It was very special and great to see her. The following morning we began to pack up and head back home.
It seems that the antibiotic is working. I have stopped having nauseas and not grinding my teeth as much. The trip home went smoothly, sure am glad I have my new van to ride home in style!

I dont understand why sometimes I have to go through so much. I do know that I am stronger person because of it. I am a super hero to my parents because not many adults could withstand all that I have been through and I am only 7 years old. Is it fair that I have to go through these challenges? No not really but then who am I to judge? Other children are worse off than me and I can only thank GOD for giving me two loving parents who would do anything in this world for me and won’t stop until they get the answers they need to help me. My mom always says what does not kill us makes us stronger…. And can I just say we are one tough family.
Love Malia

After Thanksgiving we headed home Saturday. We were going home with my new therapist Natalia. I feel very blessed to have her in my life. She has been amazing so far. She is kind and caring and her family is the same! We are so very blessed to have such wonderful people come into our lives. My mom was not feeling so hot. She thinks she might have picked up my cold this time. She never gets sick but we have been under a lot of stress and that alone can wear a body down!

We were not home for even a week when we were turning around back in the car and headed to San Jose! I began to cough again, fever came back, I can’t hold down my food, have severe nauseas, I can’t throw up because of the Nissen surgery, I keep trying and it is awful because I can’t. I am crying and I am not sleeping. Me mom and Naty (Natalia’s nickname) left for the 2pm as mom had called ahead to ER to let our favorite ER doc know we were on our way! My pediatrician was out of town so we had to go to ER to see Dr. Zuniga and get me checked out again! Our trip into San Jose was a major journey! The toll road was closed due to an accident so we had to take the old road climbing mountains, switchback turns, and 18 wheelers that drive 5mph. Mom had not taken that road in years, and Naty is our new copilot who has yet to download GPS so we had some excitement getting to CIMA. She did get it downloaded on the way up to San Jose and made it! A trip that normally takes us 4.5 hours took us 6!

Dr. Zuniga checked me from head to toe. My blood work came back normal, my lungs were better than the last xray but I am unable to eat, and continue to drool which I never ever do, I am uncomfortable and I can’t sleep. It has been six days straight since I have had a good night’s sleep. My mom and Natalia are giving me respiratory therapy at all times during the night! We decided to take another xray of my stomach and it turns out I am impacted again. Impacted?? Yes impacted. I have been impacted before. It was awful and it had to be surgically removed and one week of my life was totally ruined by this procedure. This all stems from being constipated… Even though my mom doesn’t let me go a day without pooping it still can get backed up. Mom and Dad promised me they would never let that happen to me again the surgery that is! So we called the gastroenterologist that has seen me in the past and she suggested flushing me out with a huge overdose of Miralax, and that is what we did, it was successful! The reason I was drooling, vomiting, gagging, was from all the pressure of poop backed up in my system. 🙁

Finally Dra. Castro came back! We were so happy she returned. She is the best doc ever. She loves me so much and is truly concerned for my well being. I am not saying that other doctor’s do not care but Dr. Castro and I have a special bond. We did another urine exam when I had arrived to see how things were and it turned out that nasty bacteria Klebsiella had never gone away. Dra. Castro checked me all over and we took another xray on my tummy. It turns out my colon is terribly distended and full of a ton of gas. The miralax helped me clean things out but it also can cause terrible amounts of gas. So no more miralax for a few days to give my tummy a break. Since I have the same UTI that never went away I had to start another round of antibiotics. This time they gave me CIPROFLAXCIN. This drug typically is not given to kids under the age of 18 except on special occasions such as mine. Cipro is no fun. It is a hard core antibiotic. It KILLS EVERYTHING! Not only does it kill everything good in your system it and after day 5 of taking I began to have seizures that would not stop. Unbelievably during all this time I have been sick I have not had a seizure since the 7th of December, not it is 2 weeks later and I began to seize where I can not stop. It has been three years since my parents have had to give me Diazepam (VALIUM) the cannabis oil always works on me but this time, with this drug, it did not work. My mom had to administer three different times valium to get me to stop seizing. We called Castro and we stopped CIPRO. No more. We started back on Denvar for another ten days to make sure and try and kill the Klebsiella. May I mention that our dear friend Krystal let us stay at her house so we could take a break from paying for a hotel. She is another angel in our lives!

On a positive note, we are finally going to be able to get my new wheelchair accessible van! Thanks to my family and friends that help me raise money each year at my benefit in Austin I was able to purchase a van! This was not an easy feat. In Costa Rica people who are disabled are able to purchase cars without taxes, (a $10,000 savings) However the process to get the car exonerated from these taxes took us eight long months to get! After much bureaucratic red tape and many trip to the government offices we will be given my new van! I can’t wait. It has been long overdue for me to ride in comfort and not in a baby car seat anymore. My feet were touching the floor of the car! It was long overdue but worth the wait and hassle. My parents went to pick up the car and then we had to drop it off at a place that specializes in converting the back of the van with my wheelchair accessible ramp! We had to grease some wheels in order to get the car out days before Christmas but we did it! Can I say again how blessed and grateful I am for all the good things that can and do happen in my life.

We drove the van home on the 19th of December. I am sill affected by the CIPRO, my seizures have come back off and on ever since taking that drug. Some days worse than others….My stomach and constipation problems have not gone away but I can only hope that after arriving home I can stay there for a few weeks without having to return around and go back to San Jose. Christmas came and passed and I was thrilled to see my other set of grandparents and my cousin Casey and his fiance Leslie. They all arrived on the 31st of December and we celebrated bringing in the new year together! It was a lovely time together and I am thrilled to be a able to be home.

Love Malia

It turned out days before Thanksgiving mom and Maria Jose decided to make the journey with me to San Jose. I wasn’t looking good my color was pale, I was on 02 constantly, and my fever was not going away. So we headed into San Jose and got a hotel for the week. After running a bunch of exams it turns out my C reactive protein test came back super high! 191 when it should be less than 10.. This test looks for inflammation in my body. My white blood cells were super high and my xray of my lungs did not look so hot! Thank goodness I did not have Pneumonia but Bronchitis and my doctor thought it would be okay for me to stay at the hotel and not be admitted to the hospital! I was catheterized as well and we found out not only did I have bronchitis but a UTI as well. That nasty bacteria Klebsiella Pneumoniae was back again. For the bronchitis we started with three days of Rocephin injections.I immediately started to feel better after the first injection and began to smile a bit more! Once we found out what the UTI bacteria was sensitive to in regards to antibiotics we switched it up to Denvar for ten days.

Our Thanksgiving was not dull. First of all it was Maria Jose’s last day with me. 🙁 So it was sad to say our goodbyes. Our dear friend had invited us over to her house for dinner for turkey and all the fixings. We were happy to get out of the hotel and my parents stoked to have a home cooked meal. My dad had come up the night before to spend Thanksgiving with us. My parents were enjoying the company and laughing and talking with friends when my mom noticed that the battery light was on my 02 machine. My dad went to plug it in and when he did the battery would not charge. We tried every electrical outlet in the house but with no luck. It was looking like the cable to charge my battery had decided to stop working on us Thanksgiving night! The next thing you know my parents are scooping me up and we are saying goodbye and thankfully dinner was almost ready and Krystal through together some plates of food for my parents. Out the door we went I did have a car battery charger that at least would maintain my battery and give me 02. So……what do now?? My parents are discussing how we definitely did not want to admit me in the hospital just so that I could have air… So we called Irene, remember her? She was my therapist before MJ. Her grandma used to have a oxygen concentrator that they had loaned me before. We called and it turns out they had given it away. Irene was so helpful and gave us a number to call Hospital Express! At this point in time, me and dad were in the garage at the hotel in the car with it running while mom was calling around trying to find me oxygen. CRAZY!! Mom had her doubts about someone answering at 9pm a cell phone and bringing us an oxygen machine. Guess what that someone did answer. A very nice couple was working that night and unbelievable they had a 02 concentrator in the back of their car! They delivered it to the hotel with in an hour and they also had the number to a nice man who fixed the cable to my portable oxygen concentrator the following day! What luck we have! We ended up buying the concentrator that the people brought to the hotel just to have for a back up in case of emergencies like the one we had Thanksgiving day!

Thanksgiving, it is about GRATEFULNESS…. What am I grateful for? That I did not have to go the hospital that night for just oxygen, that the lovely couple answered, for my parents, grandparents, Maria Jose, Krystal,finding a nice new therapist Natalia, my friends, and my dogs and cat Chupa. This Thanksgiving we won’t forget!
Love Malia