Sunday Funday!

May 30th, 2021

Me and Dad!

May 30th, 2021


May 30th, 2021


May 30th, 2021

Emergency Trip

February 21st, 2021

Last week I began to cough more than normal. You see having Lissencephaly/Miller Dieker I fight against my own secretions but I have to say though I am a good cougher! On Thursday I had a slight fever. It is not abnormal for me to run fevers occasionally. Kids with Liss sometimes get a lung plug. A plug is when your lungs get a build up of phlegm that needs to be coughed out and if it is not coughed out it can cause pneumonia. Since I get respiratory therapy three times a day my lungs normally work like a well oiled machine. It was not uncommon for me to have this slight fever my parents just considered it be another plug and I would cough it out.

As much as my parents try to take good care of me and keep me Covid/Cold free sometimes things just happen. Thursday night I coughed all night long. Mom every five seconds was suctioning me and I had a horrible night as the coughing did not allow me to sleep. The following day I had fever and continued to cough. My mom called Dra. Castro and she suggested an OTC cough suppressant. It helped immediately and my coughing slowed down. The fever went down as well. That night on the couch I had a seizure a big one that would not stop. It took two bottles of Dormicum (Midazolam) and the seizure lasted an entire 40 minutes long. I was pretty much knocked out for the rest of the night.

I slept with oxygen that night and Saturday morning at 4am I was very uncomfortable and thrashing around in bed. Mom gave me a nebulizer treatment to help me breathe but then I began to tremble and shake; my temperature had raised almost 4 points in a matter of an hour. I was at 103.3. My mom and dad covered me in wet clothes. Mom was anxious as I never get a fever that high, and we all know with high fever comes seizures and that is exactly what happened. My eyes rolled into the back of my head and my entire body went with stiff into a gran Mal seizure. Petrified of giving me dormicum, mom went to prepare the injection and dad stayed by my side coaching me on and telling me it would stop when we all knew it wouldn’t. I was on the maximum amount of oxygen that my machine allows and Dormicum is a respiratory depressant. Things could go south very quick but thank God they didn’t. There was a lot of praying going on. Mom injected, I stopped 7 minutes after, and the packing intensified so that we could get me to CIMA emergency room, catch a ferry on time, and all a mere 5 hours away. We considered a plane, but in reality my oxygen was already low and flying in one of the commuter planes that are not pressurized it really was not an option. I have to say I did incredible on the trip; I didn’t cry, complain, just made the road trip to CIMA knowing I would be received by some of the best.

We arrived ER at 1pm after taking the 10am ferry. Dr. Zuniga, ER Pediatric doctor of CIMA, who has known me for the last 12 years received me. When you know Dr. Zuniga is taking you in at the doors you know you are in good hands. Mom had already called Dra. Castro and she let him know we were on the way. Once inside we went straight for blood work.. First was get an IV set up in case I needed antibiotics, second lung X-ray, third nasal suctioning for a complete panel test of viruses including the dreaded COVID, fourth respiratory therapy and another deep nasal suction into my lungs to pull out any phlegm that may have been sitting down there too long.

Amazing all results were back in two hours. Diagnosis: Rhino Virus, Pneumonia left lung, possible sepsis for high PCR and Procalcitonina (levels of bacteria in blood) overall not a good report but then not a bad one either. Even though my parents are super cautious and take extremely good care of me, there was the underlying fear of Covid 19 and it was negative. THANK YOU GOD! After my respiratory therapist saw me, I received a good dose of Rocephin through my IV. Dr. Zuniga said I would need to be on it for three days.

After over 5 hours at ER in CIMA we were allowed to leave with my IV tightly wrapped on my arm and we headed to our Aparthotel in La Sabana Sur. We like staying there as the staff are always so kind to us and it is a perfect spot with a kitchen and living room. Anything is better than being admitted into the hospital! 😉 Thankfully Dra. Castro and Dr. Zuniga discussed whether to admit me or let me go. End result….. was simple my parents have a small traveling hospital, and are always on top of me so we were allowed to leave the hospital.

Over the next few days I was to receive two more doses of Rocephin. One of my nurses that has known me for years agreed to come to the hotel and administer my antibiotic intravenously. She is an angel that is for sure and has helped us out on so many occassions. Carmen has a such a kind heart and has always helped us no matter what the time or situation.

On Monday night, my dad went out for some takeout. There is a really great Chinese restaurant right down the street from our hotel. My dad went to pick up a menu, on the way out he watched the owners nephew run right into the back of my Special Needs Mini Van… Yep…. that happened. Tail light, bumper, dent, etc…. Thankfully the owners of the hotel were super nice… Bought us dinner, paid for the damages and our mechanic for over 15 years got my van up and running in less than 26 hours. Simply amazing… This does not happen just anywhere and especially here. God Is GOOD !

Our last night in town, my favorite Dra. Castro came to visit me after a long day of work to listen to my lungs and check me out. She is amazing, sweet, kind, human being… Not all doctors are like her! She was more concerned at seeing me in her office and exposing me to germs so she took the time out of her busy buys schedule to come and see me at my hotel at 7pm. My blood work had come back earlier that day with better results than before… Dra. Castro gave me the green light to go home and I was to continue oral antibiotics for the next four days… We made the ferry, picked up my repaired van, and headed home…

So blessed… so grateful. So loved.

Love Malia

Where has the time gone?

January 31st, 2021

Exciting News!

October 13th, 2020

My therapist Laura, who has been working with me for almost a year told us last week that she is expecting a baby! Her and her partner Erick, are very excited about the news and so we are we! I will be sad to see Laura go (we all will) but we are very very happy for her and her new exciting adventure! I told Laura the other day, at least she has had a great experience now in changing diapers and when her baby comes along she will be a pro! Laura and I have a great time together and we have made great strides in my therapy.

During the time that Laura was on vacation in September, a former girl that we had hired Cynthia got in touch with my mom. Cynthia was going to be my therapist after Roxanne. She had accepted the job but then her father became ill and she could not come work for us. Almost a year and half later she reached out to mom and offered to help out during holidays and vacations when Laura would not be here. It turned out that when she texted my mother it was the same time Laura was getting ready to leave for two weeks. Mom had Cynthia take a Covid test and then she came on out to work with me. She wore a mask and face shield as well during Covid we have to be extra safe and careful with me! Cynthia worked ten days with me and we got along well. She said she was still interested in being my therapist. After Laura’s news, we asked Cynthia if she would like to come to work for us and she said yes. It all worked out for a reason and God played a big hand in having Cynthia come back in our lives. I feel very very blessed. One for getting to spend time to know and love Laura and also to have the opportunity to get to know and love Cynthia. God is good. Our family is blessed and I am just so grateful for all the love and support for all of you. Our family wants to wish the very best to Laura, and we can’t wait to meet her new baby someday! Laura will stay with us another month and then head back to San Jose.
Love Malia

Me and my Dad

October 13th, 2020

My daddy pushed me the entire 5K! Whew we were both tired!

My first 5K!

September 30th, 2020

Lissencephaly Awareness Day September 6th 2020! We walked/jogged our first 5K as a family! We went down to the beach to start our walk we did half on the beach and the other on the road towards Cabuya. It was a beautiful day, full of sunshine and breezes. The first 3K I slept thru but woke up towards the end and had fun. My buddy Genesis came with me and Laura and Maritza! We had a great group in support of Lissencephaly.

Lissencephaly can be passed genetically or randomly occurr. I was randomly picked by God to be my parent’s special angel! 🙂 Lissencephaly causes many problems but I do not let it get me down! I fight against seizures a daily battle. I am a tough kid known as Little Bull! I as well am a teacher, as my mom has said I’ve been her best teacher of life!

We had a great day. Look forward to next year’s 5K!

Love Malia

Lissencephaly Awareness Day Our Mini Story!

September 8th, 2020

It was a life choice to move to the Nicoya Peninsula, Costa Rica. In 2000 my husband Breck and I loaded up all our belongings, packed up an old Ford, and drove down to Costa Rica from Lockhart, Texas. The road less traveled is the road that you take to get where we live. The capital of Costa Rica, San Jose, is where all the doctors, hospitals and modern-day conveniences are located. In order to get there, we have to drive rugged mountainous terrain, cross the Pacific on a ferry and be in the car for 5 hours. It’s an adventure alright, but well worth it! Once you arrive here the beaches, nature, flora, and fauna are amazing! The culture, and Costa Ricans are even better! This Texan/Canadian team met on an airplane to Costa Rica in 1996 and decided to join together and pursue our dreams to live a different kind of life. In the year 2008, we opened a landscaping home and garden center and on June 17th we had our sweet girl Malia Claudia Moore.

The end of my pregnancy was rocky. I somehow contracted the CMV virus without even knowing it. I had felt great the entire time I was pregnant! Malia’s birth was by caesarean; she stopped growing in the last trimester. She was tested immediately for the antibodies of CMV. We had been told if I had passed CMV to her she could be blind, deaf, and mentally disabled. The tests came back negative! We were thrilled! We had rented a home up in the mountains of San Rafael Escazu, and we took Malia home the following day. During my pregnancy, the doctor heard an irregular heartbeat and saw dilated lateral ventricles, he suggested following up on the findings. Six days later we had scheduled appointments to see a cardiologist and have an ultrasound on her brain. The first appointment was the ultrasound. The doctor spent what seemed like hours to us passing the wand over and over Malia’s small head. The look of concern on her face made me squirm with worry. She finally finished the ultrasound to tell us that Malia had a rare brain disease called Lissencephaly. LISSENCEPHALY ?? What in the world is that? “Your daughter will never walk, talk, or function on her own.” Bam…. Take that. The following cardiologist appointment was difficult as I couldn’t stop crying and the doctor looked at me and said, “Don’t worry it’s just a murmur we can fix it and Malia is going to be okay”. He didn’t understand that our lives had just been completely turned upside down from the news of the previous doctor. We harrowingly escaped the CMV virus to be diagnosed with LISS. Friends and family told us we would need to come home. How can you take care of a special need’s child in a third world country and especially out where you live? Two months later through genetic testing, we discovered that Malia as well had Miller- Dieker Syndrome, meaning that she not only has a smooth brain she is missing the 17p 13.3 chromosomes. Breck and I were not carriers it was De Novo. It just happened, we were destined to have this angel! Fast forward 12 years and we are still here on the Nicoya Peninsula, thanks to Malia’s incredible team of medical doctors, our family, friends, and all those who support Malia near and far through our benefit held each year!

In order to arrive quickly to a hospital in San Jose, the only option is to fly in a small single-engine plane. We once were kicked off the local commuter airplane when Malia was sick and was taking oxygen from a tank. The pilot said we couldn’t have the tank onboard and told us to get off and yes just like that we had to leave the plane. We had to wait an hour for a private plane to come – a Cessna 4-seater. Trust me, flying over the mountains being tossed around like a boat during a storm with your sick child in arms was definitely exciting and nauseating at the same time! Malia gained the nickname Little Bull by the nurses in ICU on that trip. We have never had a dull moment since Malia arrived! The stories are many! Malia has survived pneumonia three times, a major kidney infection, 2 hospitalizations for status epilepticus, was intubated in ICU for six weeks with a UTI that caused sepsis, and then pneumonia, and it took us three months to get out of the hospital and back home. She is a fighter with incredible strength like all our lissencephaly kids are.

Malia’s seizures are now our biggest battle. For the most part, Malia is a healthy, happy kid. It’s the seizure monster that takes its toll on her. We have tried every drug out there (minus barbituates) to get the seizures under control. CBD oil did wonders when we first started it, and she went six months seizure-free. We became pioneers in discovering Charlotte’s Web thanks to beautiful Charlotte Figi and her story we watched on CNN many years ago. We persisted in getting CW and later became advocates in the legalization of CBD oil here in Costa Rica. Malia’s insurance doesn’t cover much. We heard from other Liss parents about the VNS, one mom, in particular, a good friend Daphni Hamilton. Her son Connor, also a good friend to Malia, had great success with the surgery! We discovered Costa Rica did have the VNS implant at the children’s hospital. It is a social health care system and 12 kids are picked yearly for the surgery. We asked Malia’s neurologist if she was a candidate and sadly enough she was denied. The hospital picked kids that had more progress than Malia. No parent ever wants to be told that your kid is not good enough for something. So we began to research and found out that sometimes if your insurance will not pay for the surgery the company will donate the device if and only if everyone else donates. Amazingly after much advocating her doctors and the private hospital, everyone came on board and donated the device, surgery, operating room, and a night at the hospital. It has been a year since the operation and we have seen a 40-50% improvement in the reduction of seizures and intensity. We are so blessed and grateful for everyone who helped us achieve this great feat. Malia loves her home, she lights up when the parrots fly by, she likes to hear the monkeys roar, she loves to swim, adores her strolls, goes to the beach, loves to read books and make paintings with her hands and feet. The pros of living here outweigh the cons of not being close to a city.

In short, it is an unplanned journey being Malia’s parents. The life that was given to us depended on how we perceived it. Malia’s profound medical disabilities and complex medical challenges have molded who our family is today. A family that takes the challenges presented to us in full force yet receives the strength, determination, light, hope, education, and love from our girl we call Little Bull.