A Month of seizures

October 30th, 2018

3 Little Birds for Malia

October 14th, 2018

https://youtu.be/q8h9Ou8B6Tg

Coming Home!

September 30th, 2018

September 26th,2018

Thankfully after taking the antibiotic that mom brought for my SIBO flare up I began to feel better. I was able to relax and sleep a bit. I have not been sleeping much at all due to being uncomfortable with my tummy. My gran mal seizures were on the rise and the night before we flew home to Costa Rica I had three of them again. We were all a little anxious about the travel day. We have so many things that we travel with and more than anything mom and dad were just praying for no seizures, nor me getting upset over my tummy.

Besides the flight being delayed for an hour, due to weather, everything went great. I was such a trooper on the plane. I did not have any seizures, I didnt sleep either but at least I was comfortable in my seat. We had no problems at the airport and loaded up ALL our stuff in a taxi van and off to Krystal’s we went. We arrived late that evening. The following day was a rest day, and we were scheduled to go home Friday. That night I began to have a seizure and it would stop then start again and this went on for a few hours until mom wrote the Dr and decided it was time to go to the hospital as I really could not get the seizures to stop on my own.

Off we went to ER, I was administered Dilantin via an IV and Diazapam. I drifted off to sleep, and we stayed in ER for 7 hours, Dra. Castro came down to check on Malia, and we all decided that it was best for me to stay the night and be monitored. I slept most of the night. The following day we stayed until 5pm I was having spasms but not like before and since the IV popped out and there was no other way to administer drugs except orally we decided to leave. We went to a hotel across the street and stayed the night. The plan was to go home Sunday. I did pretty good that Saturday night and we headed for home Sunday morning.

Not sure what has caused the regression of this type of seizure. Could it be the antibiotic I was taking?? Hoping that is goes away and never comes back! We caught the morning ferry and we were home by 1:30pm.Boy was I so happy to be home… Finally my own bed!
Love Malia

A Decade of Love! 10th Annual Benefit

September 30th, 2018

We were told she would only live to be 2. We decided to have a fundraiser for her care. In reality when told as a parent your child will only live to be two you make a decision right there and then to defeat those odds and prognosis. So began the Malia Moore Benefit.

We made it through the first year onto the 5th and decided why not continue to celebrate each and every year our sweet Malia lives? Once a year we make our journey to Texas. Only a 4 hours flight across the Gulf of Mexico, it may seem easy to those of you who travel with your kids all the time but with Malia it truly is a JOURNEY. We left Costa Rica on September 8th with 8 suitcases in hand and 6 of them empty. We must take advantage and return with medical supplies! On September 22nd we celebrated a DECADE OF LOVE. A true accomplishment for our sweet girl.

This year Malia’s newest nurse/therapist Roxana was denied her visa and unable to come to the party. Thankfully Maria Jose, and Natalia came to the rescue and were able to split the time away between the three weeks we were gone. Malia is so blessed and so are we to have such amazing strong women in her life that love, care and support her. We were sad Roxy couldn’t come but so relieved that MJ and Naty could. Making a journey that far with so many things ( mini hospital) would be no easy feat by ourselves.

Behind the scenes of organizing the benefit is no small deal. We begin the planning in April, and the hard work and dedication provided each year from our amazing friends and family is unreal. From designing the flyer and T-shirt to the distribution of the flyers no small thing is left behind. It’s like planning a wedding each year but it is much more than that, its a reminder to all how lucky we are to wake up and take a step out of bed, to be able to feed, bathe, and dress ourselves. A reminder that we don’t have to live in fear of a horrible seizure sneaking up only to take you down so hard that you are not yourself until hours later. A reminder that Liseencephaly/Miller Dieker Syndrome is real and that there are unfortunately many children throughout the world that suffer through it.
The silent auction is a beast in itself. The items donated from friends across the world, (three very special women help with the majority of that),the organizing of the items, the actual auction day and auctioneers, the setting up of the event place, our fabulous MC’s and THE BANDS! The amazing bands that play for free each and every year because they love of our girl. We are so blessed that there are not enough words to describe how much it means to us all the friends and strangers that come to celebrate Malia.

During the show I saw an older man watching the bands sitting alone and enjoying the music. He was there from the start. I thought to myself I wonder why is here? Is he a patron at the restaurant just enjoying the free live show? So curiosity got the best of me and I asked him what brings you here today? He says ” I love Threadgills, (the venue we were at) and I saw on their website the benefit they were having for this little girl.I went to her website and I read her story. I thought this girl and her parents are fighters, I want to meet them.” He drove two hours from San Antonio to come meet Malia and hear the great music. His sincerity and kindness brought me to tears. We had a great time at the benefit together. He was so kind and so real.

Unfortunately this year Malia had a flare up of her SIBO, Small Intestinal Bacterial Over Growth… She has not had to battle this for close to two years. On Friday, the night before the benefit and at our annual social hour she became fussy and was crying a lot. If you know Malia, you know she never cries. It takes a mountain of pain for this girl to cry. When she started fussing our radar went up . It subsided that evening but on Saturday the day of the benefit she was fussy again and then literally minutes before we were ready to walk out the door to her party she was hit with three Gran Mal seizures right in a row. We had to sedate her to get the seizures to stop. Natalia was there with her and we talked about it for a while and decided after almost an hour later that Breck and I needed to go to the benefit without our little girl. We left Malia and Naty behind and we went with our heads held high. The show must go on and Malia will pull through this with some time! We never doubted she would not pull through and come to her party.

Many of you may know that people that come to the benefit don’t come to see us but to see our Malia. Every question asked was where was she???? It was hard to speak the truth, that the seizure monster had stolen her gran entry but that we had faith she would come out in the end. We were in constant communication with Naty and at around 8pm she told us she thought Malia was ready to make her entrance. What perfect timing… as I had planned to sing to Malia with the last band Twilight Trio, Malia’s song, Three Little Birds. Breck went to go pick up the girls and Malia came rolling in minutes before I went on stage to sing her the song we’ve been singing to her since birth…. Don’t Worry About a Thing cuz Every Little Thing is Gonna be Alright.

Thanks to Threadgills for supporting us these last two years. Working with you has been a complete joy. Danny you and your entire staff were awesome to us. We are sad to see you go and the reason behind why your doors are closing. We hope you know your legacy will live with us forever. Thank you from the bottom of our hearts for giving us your incredible place. It was truly a ROCKING GOOD TIME!

Malia you are amazing. You light up a room where ever you go. Your smile speaks a thousand words and your eyes even more so. Your courage to live and fight through each day amazes us all and that is why so many come to see you, work for you, play for you, and admire you from afar. Thanks to all of you who come each year… who donate , work, love, play music, and for just being there to support us and Malia’s cause. It’s not just about raising money its about raising awareness and each and every year you come we are able to raise the bar just a little more.
We could go on forever thanking each of you by name, but you all know who you are and how very much we love and adore you. We did an amazing job this year and are proud to announce we raised $25K and a portion of our proceeds will be donated to Research of Lissencephaly and The Parker Lee Project. Thanks to The Parker Lee Project for the legacy you’ve made for your beautiful daughter Parker and how many children’s lives with special needs you help on a daily basis. TPLP has helped our Malia more ways than any of you could ever know. ❤️
We love you all, Rachel Breck and Malia

My Annual trip to Texas!

September 30th, 2018

August is over!

August 30th, 2018

August was a pretty good month for me. Things really haven’t changed a whole bunch in regards to the seizures and phlegm but I had a great time with Granny while she was here visiting me. She came over everyday to read me books, my paw paw Brown was here too and we had fun together… Later came my crazy uncle Jack.He makes me laugh and you should hear him trying his best spanish accent reading Skippy Jon Jones! :) We are building a deck off the back of our house and it is finally finished. It looks really nice and I love sitting outside on the deck for lunch. Roxy and I created many arts and crafts out there! I love painting! Roxy had a great idea and together we painted three little birds on a canvas print. We used my hands and feet to make the birds. It turned out awesome! Then MJ had the idea that we should use if for this years flyer! It looks so good. You can see it on my homepage!

Am getting excited as we fly out next Friday for my tenth annual benefit in Austin Texas. I am looking forward to seeing all my family and friends! Praying that I don’t have too much phlegm or seizures on the plane. Prayers appreciated for safe and non eventful flight!
Love Malia

July Flew By in a Blink!

July 31st, 2018

July flew by. I had many issues with phlegm and seizures. Some days all I would do is have respiratory therapy, and constant suctioning with the machine. It is very stressful to have to deal with so much phlegm and as well to have something stuck down my throat the majority of the time. I know it doesn’t sound pretty but it is the truth and reality about my life right now. Mom doesn’t understand how this happened… Why now do I have to battle the phlegm so many other kids like me since birth have had this problem but I didn’t until now.

We still continue to look for a drying agent one of the medicines that can help dry up secretions. We haven’t really had any luck with that! We have had friends look in Panama, Mexico, Brazil. One weekend when my cousin Tressa and her family were visiting I had a terrible experience with the phlegm and seizure combo. My mom was brushing my teeth.. She always brushes the roof of my mouth it helps me to cough and I was in dire need of a good cough! Just at that time that I coughed and mom began to suction me I went into a gran mal seizure. This time though this horrible, complete body convulsing seizure would not stop… My parents gave one 5mg bottle of Dormicum which should do the trick and get it to stop and nothing. Then she gave me another bottle and still it would not stop! Mom was on the phone with the neurologist to find out exactly how much more could I receive. It was going on over 30 minutes. I heard mom call Life Guard and ask for an ambulance and for a plane to come to Tambor to pick me up. The main problem with giving too much of this sedative is that I can go into respiratory distress and stop breathing.

My dad was kneeled down on the floor next to me telling me it was going to be okay. He kept telling me over and over again how strong I am and that I can kick this seizure butt! Mom called Roxy she was out with friends in Montezuma so she called Maritza to come help us pack up it looks like we will be taking a emergency flight to San Jose again. Mom was so nervous to give me the third bottle, but the neurologist said that I could handle one more bottle. We have NEVER had to give so much drug to get my seizures stop. I was currently in what is called Status Epilepticus. Meaning not being conscience while having a seizure and unable to stop. Prayers went up for it to please work and stop. The third bottle was given and after 15 minutes later it finally stopped. Thankfully mom called and cancelled the flight and the ambulance. I was exhausted and drugged and slept for a good while.

My parents keep thinking that the added seizures are fault of having so much phlegm. It is so stressful for me. So last week we decided to try cutting out a new formula I have been using it mixed with another formula that I take since January. We thought maybe it could be allergies. We cut it out and to be honest I am better! I actually was able to enjoy the weekend with having to have hours upon hours of respiratory therapy! My parents were super happy too as we could go strolling and I was not having to be on oxygen at all times. I still have the phlegm but it is not as bad as before! Hoping that this new change helps! I have to get better as I have a trip to Texas to take in September! Keep me in your prayers!
Love Malia

10 YEARS OLD

June 30th, 2018

I made it to ten years old. TEN YEARS!! Woohoo! I am now in the double digits! Unbelivable after all I have just gone through and I am still managing to show up and have fun at my party! Whew, what a week…. I did not stop seizing until Tuesday. 4 days of on and off stop seizures that would not let me sleep or rest peacefully. BUT…… I STOPPED! I was good to go by Wednesday! And mom and dad decided how could we cancel the best party of the year celebrating my TEN YEARS!!!

All my friends came! My Uncle Jesse and Aunt Debbie were present as my family and of course Aunt Kathy! She never misses my birthday! We had a great time. Lots of preparations and planning for my big event. The theme this year was FLOWER POWER! Super easy as my home is surrounded by flowers… and POWER IS WHAT I HAVE!

It was a peace and love kinda day… Lots of food, good times, laughing and great costumes! I was of course the cutest of all! We had pin the tail on the hippie girl, water balloons which I was able with help to throw a few!! Cake, music, song and fun… The best part was I enjoyed it all… Smiles were flowing from me and I know that is the best thing I can give to anyone is my smiles….

Another year down, praying to the Lord above and all his Angels that surround me that I will have another great year…. Thanks for all who came and for all the good wishes I received on line! Until my next big birthday bash..
Mucho Amor
Malia

Uncle Jesse

June 30th, 2018

There is a special kind of love between me and my Uncle Jesse. Not sure how to describe it but the best way would be to say we just connect. He has always been pushing me since when I was a baby! His favorite thing that he likes to do is give me 4 not 3, not 2 nor 6 but 4 kisses on my forehead. He started that a long time ago and I love it. It was so great having him and Debbie here. He is a great book reader! He read to me many times one of my all time favorites Skippy Jon Jones… You know that crazy Siamese cat who thinks he is a Chihuahua! You have to read it with a spanish accent! He did a great job singing and using his best spanish accent! :) I love him so much. He believes in me 100%. I was sad to him go but we will get to see them soon in September for my party.

Love
Malia

Emergency Flight SAN JOSE

June 30th, 2018

June 8th 2018

Thursday night at around midnight I began to have spasms. ( seizures) My arms and legs would stiffen. My mom who was sleeping next to me got up and got my CBD oil to put under my tongue to get the seizure to stop. This time it didnt work. The seizures weren’t as intense as the ones I have been having but any seizure is a bad seizure and must stop. By 2:30am mom had tried giving the rescue drug Diazepam (valium) rectally. Still nothing I kept having these spasms. She wrote both Dra. Castro my pediatrician and Dr. Luna. We have another type of drug Midazolam, to use for stopping seizures and mom was nervous about trying it, but she and my dad felt like we had to give it a shot. The problem with these drugs is that they can make you go into respiratory distress and that is a very scary thing. Mom tried the second drug and my seizure finally stopped. It had been going on for 6 hours and I slept four hours without waking up. But by 8:30 am I was at it again. Once again we tried the drug Midozalam as that helped last night. Nothing. It did not work. Next thing you know mom is packing. She has spoken to both doctors and everyone is concerned for me and that we need to get this seizure to stop. The next step was a phone call to the airlines. My mom organized a private 4 seater single engine Cessna plane to come pick us up in Tambor. (a thirty minute drive away) Mom called Roxy and said get your bag together we are making a quick trip to San Jose. We quickly packed up the house, and dad drove us to Tambor to catch the plane.

A Cessna is pretty tiny.Dad was outside of the plane trying to break down my wheelchair so that it could fit inside. At that given time I went from spasms into a gran mal were my eyes roll back into my head and all you can see is white and my body starts jerking. Mom told dad to forget the wheelchair and yelled at the pilot to get moving.. Thankfully my gran mal did not last too long a matter of 20 seconds which can seem like a lifetime for someone having to watch me go through it.
Dad told us bye, the pilot cranked up the plane and off we went to San Jose. Mom had told the pilot to have an ambulance waiting for me at airport. I continued with the spasms. Once arriving the airport the ambulance was there waiting for me. Mom had to negotiate a deal as the driver wanted to charge us $400 and mom was like no way the hospital is 20 minutes away. Mom is good at negotiating she got him down to $200! We flew to the hospital; the driver was driving a bit fast! Once we got to CIMA, I was taken into the emergency room right away. Since I was technically not in status meaning I was able to regain consciousness between each one, I was able to stay in the outpatient emergency room and not admitted to ICU. Thank goodness…

Dr. Zuniga came in (he is a favorite of ours) and mom explained what was going on. I was administered 2mg of Dormicum via an IV. Since I had not really slept at all in the last 24 hours the IV worked fast and I was able to stop seizing and go to sleep. During the time I was asleep they took my blood, and I was catheterized for a urine test to make sure I did not have any urinary infection and to make sure nothing else was going on with me! Sometimes any kind of infection can trigger seizures but mom knew deep down that it was probably more than likely the Atropine. It was the only different thing we had done.

About 45 minutes later I woke up and we went and took a X-ray of my lungs to make sure they were clear. Everything kept coming up clear and me in good health. Sure enough not soon after I woke up the spasms started again. They gave me another dose of the dormicum but this time I did not fall asleep or stop with the seizure. Sometimes I would go 5 minutes without having one then other moments they would be less than a minute apart. Every time a nurse, doctor, cleaning person, lab tech that walked by and saw me they all stopped and said LOOK ITS MALIA!! It has been years since I have had to go emergency. Some were shocked to see me everyone was so happy that I had been doing well.

My daddy showed up at 7:30pm, he took the ferry and brought in my wheel chair and our van for me to get around. It was so good to see him. Roxy was finally able to go to her friends house and get some rest. We stayed at CIMA emergency until 12:30am. The doctors said since I was not in Status nor had any other kind of infection or illness that I could go home. Dra. Castro said it was much better than staying overnight in the hospital and possibly picking up something bad from there. Even though I had not stop seizing with these spasms at least I was not being admitted. My parents weren’t happy that the seizing had not stopped but what else was there to do?

We went to a hotel close by the hospital so in case we need to move quickly we would at least not have to go far. We were all exhausted. Dr. Zuniga had told my mom how often she could give me the sedative to try and see if it would stop and when we got to hotel mom gave me another dose and I fell asleep from 1am to 6am. Mom and dad were so relieved that I was able to sleep!!! We pretty much thought we had nipped it in the bud, but unfortunately about an hour after me being up the seizure started again.

It was now Saturday and my Uncle Jesse and Aunt Debbie were flying in Sunday afternoon… I hadn’t stopped but then what else was there to do? I spent Saturday with Roxy for a bit as my mom and dad had shopping to do for my birthday party… My parents just believed that surely it was going to stop… Don’t think they did not try everything. Even tried cannabis oil rectally but nothing really was working. They seemed to be getting farther apart and then again not. It was never ending. After speaking with the doctor again we made the decision we would go home. The only thing we could do was wait until the Atropine was totally out of my system and see if they stopped. I was happy to be going to get my uncle jess and aunt debbie.

The following day we packed up thankfully for the van we can fit us all. We headed to the airport, my Tio and Tia were on time and outside waiting for us. Was great to see them both. We headed out for the ferry and although I continued to spasm I was calm and enjoying the ride home.

It was not until Tuesday when the seizures finally stopped. Thank you Lord.. I know You had a hand in this and I heard mom and dad praying every night. It was most definitely the Atropine. Sadly enough it really did help me with my excessive phlegm I am so sensitive to medications. In the side effects it did not even say that seizures were a possibility but the neurologist said with kids like me anything is possible!

I am grateful I am home and doing better and can celebrate my birthday with my family and friends.
Love Malia