Archive for the ‘Uncategorized’ Category

Annual Christmas Tree Lighting!

Saturday, December 8th, 2018

Santa!

Saturday, December 8th, 2018

A trip to the city! (for fun)

Saturday, December 8th, 2018

Finally after all these years we are making a family trip into the city to have some fun! We left the house on Thursday morning and headed to San Jose. Today is the annual tree lighting at the Children’s Hospital. This makes our third year to go! The hospital always lets us go in through emergency and we get to go behind the scenes and sit right by the tree. Many many people come to see the tree lighting plus there is a huge show with music and dancers!

This year we cut it a little close, as I did have one last minute appointment at 5pm. We went to see neurologist Dr. Sittenfeld. He is the neurologist who knows how to calibrate the Vagnus Nerve Stimulator. Mom had spoken to the representative Gabrielle Cayama at Liva Nova and he had told us our first step in getting the device was to make an appointment with Dr. Sittenfeld. The doctor was very nice to me. Mainly mom was just filling him in on all the different types of seizures I have and asking if it would be possible to have the VNS surgery here. The doctor is going to help us and will be writing a letter for us so that maybe we can get the VNS device donated a mere $20,000 device! Dr. Sittenfeld said he would be happy to donate his services and time as well.. So fingers crossed!!!

We rushed to the children’s hospital and made it just in time to see the tree lighting! There are 25,000 lights on the tree, it is amazing to see when they turn it on! I was quite fascinated with it and of course getting to see Mr. and Mrs Claus.. They are always so sweet to me, Santa always whispers a secret in my ear! This year the local news came up to us and asked to interview us. They were impressed that we came all the way from Delicias just to see the tree!!

We had a great night! I was pretty pooped from the trip and all super stimulated from all the excitement but wouldn’t change a thing! It is our family tradition and a fun one!

The following day we went to the park that we always drive by and say we are going to go one day. Since I didnt have any doctors appointments we went and strolled around the lake and it was a gorgeous day and so nice to be out! Getting super excited as today my two best friends are coming into town to see me and we are going to the ballet!!

Love Malia

A Month of seizures

Tuesday, October 30th, 2018

NOVEMBER IS EPILEPSY AWARENESS MONTH! Proudly wearing purple the color for Epilepsy. What Malia has been through in the last two months has been almost unbearable to watch. Malia, our little bull, who has struggled with epilepsy since she was six months old has always battled the seizure monster. She’s has had decent control, but recently the seizure monster came back with a vengeance.
In six weeks she has been hospitalized for status epilepticus. ( seizure that will not stop after rescue meds and requires IV drip infusion of drugs). We have watched her suffer up to 200 seizures in one day. We have tried five different drugs. The CBD oil, seems to not be working for her anymore. What we thought was a routine 2 day visit in San Jose two weeks ago ended up being 12 days. We came home Friday, as Malia showed slight improvement with this latest new drug. We tackled the weekend fighting the seizures again and again. Thankfully Roxy was with us in San Jose and a big help during this time.
We are currently searching for the Vagnus Nerve Stimulator Device and hopefully will be able to buy it for her, a mere $15K. Her neurologist here is speaking with a Pediatric Neurosurgeon tomorrow to see if he is willing to do the surgery privately as she is not a candidate for it at the Publicly Funded Children’s Hospital due to the extent of her prognosis.
On a positive note, today she had one of her best days in months, the smile was there and the twinkle was back in her eyes. Little Bull, fights a very tough fight. She has our upmost admiration. She is a true warrior. She has an old soul and not only the tenacity of a bull but an OX.
Our family is stronger because of her. Our faith is strong, and our belief that good will overcome the evil seizure monster. Our will and drive to continue to fight for Malia will never falter. Please continue praying for Malia. She needs all the prayers she can get and to return to the control she had months ago.

Hanging Tough!

3 Little Birds for Malia

Sunday, October 14th, 2018

https://youtu.be/q8h9Ou8B6Tg

Coming Home!

Sunday, 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

Sunday, 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!

Sunday, September 30th, 2018

August is over!

Thursday, 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!

Tuesday, 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