March 26 Epilepsy Awareness Day!

March 26th, 2018

As you know, my seizures have increasingly become worse. They are called partial complex seizures. My arms shoot out in front of my body my eyes roll up and I begin to shake. Thankfully they don’t last too long, 10-15 seconds. I have a nasal spray that I use that helps to make them stop. Sometimes I can have up to three of those in one day.

We have all been wondering why have they become so strong and more frequent? Is it that I am getting older, my brain is growing? The seizure monster used to only come when I was sleeping or right when I was waking up. Now he is coming whenever he feels like it.

We recently went to San Jose where mom had scheduled an appointment with my neurologist to see if he had any suggestions. In all reality I have tried everything out there when it comes to seizure drugs. My parents are against me taking Barbituates as they are highly addictive, and my parents nor myself want me to become a drooling zombie. When I started CW out of Colorado and went six months seizure free it was before it became legal in all 50 states. When it became legal it was because the had to lower the amount of THC so now it is sold a hemp oil and readily available to all. But…. that change maybe the change that messed things up for me. My seizures came back not to the amount as before but they came back. They were manageable but now they are just annoying and very taxing on me. So we began to look at other alternatives which is trying a different strain of Cannabis and using the total plant. Dr. Luna supports medicinal cannabis and agreed with my parents that this would be my best option as we are at my maximum and can not raise my current AED (anti-epileptic drug).

On Epilepsy Awareness Day we are going to be making a change and trying a stronger strain of Cannabis. I’ll take a three day break of oil (reboot to the Endocannabinoid system) and then start my new oil on Wednesday. Praying that it works and takes the seizure monster or at least mimnimzes them! Every child should have the right to try cannabis. Legalize it! Cannabis is Medicine!

Love Malia

February

February 28th, 2018

February 28th World Rare Disease Day!

A day to bring awareness about rare diseases… Did you know that there are more than 7000 rare disease types and that 80% are caused by faulty genes? My Lissencephaly/Miller Dieker Syndrome was caused by a de novo mutation not by faulty genes from my parents. My chance to have another brother or sister with Liss/MDS would have been one in a million. My parents tried to give me another brother or sister but they were unsuccessful the second time around! They told me I was conceived in three months once they started trying but they’ve been trying for years now with no luck. They get to spend all their time and attention on me! :)

It is important to keep reminding and bringing awareness about Rare Disease Day! Educate and Investigate. Thanks for all my supporters out there rooting for me.
Love Malia

My friend, Maddie Bermingham

February 25th, 2018

Maddie Bermingham was my kindred spirit… Born into the world of Lissencephaly/Miller Dieker Syndrome we were connected from the start. We never had the opportunity to meet in person but my mom would show me pictures of her, we actually favored one another! Maddie was a tough girl like me! You can’t be a Miller Dieker kid without being tough. One battle after another we have to conquer…. whether it be hospitalizations from being ill, surgeries, seizure fighting, oh the list goes on and on…Maddie fought very hard for 6.5 years. It broke my heart when I heard the news of Maddie losing her battle to a seizure. It is just so unfair. I am sorry I never got to meet you. I know your mom and dad and brothers are missing you so much. Even though you are in a much better place than we are down here you are missed and thought of daily. I see you running,jumping,singing and dancing… I am sure the angels are amazingly beautiful in person. Fly high Maddie loo….. We sure do miss you.
Love Malia

New Years!

January 22nd, 2018

The year flew by me! So much has happened in one year. I thankfully have managed to stay away from doctors minus my normal check ups.. I did have another bout of SIBO but it seems like we have managed to get it under control. I gave up my real food for a type of formula that is easy on my stomach but packed with loads of nutrients and minerals and no sugars. I can’t do sugars such as fruits nor carbohydrates as they convert into sugars… The naturopath in Colarado suggested that I stay away from it all. I am okay with it. I am maintaining my weight and even putting a few pounds on.. My mom was sad to stop giving me my regular foods as she has always loved to cook for me. I had to convince it was going to be okay and the best thing for me is for never to have SIBO return as it is one of my biggest enemies.

New Years Eve we hung low and had my grandparents and neighbors over for dinner. We even managed to hula hoop a bit! Dad was having fun putting the hoop over my chair and spinning it around. :) Granny even tried to hula hoop! But Susan our neighbor was the best! Boy could she move that hoop!

I was asleep before midnight so didnt make it to the new year…. I am hoping 2018 is full of health for me and seizure free. Big wish there but a girl can sure dream. So grateful for another year.. Time sure does move fast. Wishing all my family and friends out there the best 2018 has to offer.
Love to all
Malia

Holiday Fun!

December 31st, 2017

Such a good time had by all during the holidays! Was so awesome to have both sets of grandmas here and Paw Paw Brown too! We had much fun together and made cookies, mom and dad read me the night before Christmas as they always do..It was really nice being together! On Christmas day we had friends over for Christmas dinner and dad smoked a turkey all day long which was delicious.. I did not have the best Christmas morning as I woke up with a bad seizure that wiped me completely out.. I did however rejunevate by the night time and we opened a few of my gifts as there were plenty of them under the tree for me! I kept opening up gifts daily with mom and dad… So blessed to spend another Christmas and even more so with more family. Love Malia!

A new tradition!

December 18th, 2017

December 4 2017

We are headed to San Jose today! We are excited as my Grandma Marg is coming to spend Christmas with us! We are so happy to have her here during Christmas!!

We have decided to start a new tradition! Last year when we donated the couch and chairs to the ICU department of The Children’s Hospital in San Jose, it was at the same time of their annual Christmas tree lighting. I had such a nice time at the tree lighting as was treated like VIP so we decided we would come to San Jose each year to see the lighting of the Christmas Tree. It is a huge tree a big Cypress that proudly stand at the front entrance of the hospital. They have many activities going on! There was music, dancing, a parade, and of course Mr & Mrs Claus! I loved every second of it especially when Santa came up to me and leaned down to talk to me! He was so sweet. I love Santa.

After the lighting we headed to one of the oldest theaters in town, the Melico Salazar Theater in downtown San Jose. My parents had bought box seats for us to go and see the Nutcracker!!! Talk about a busy day! Roxanna came with us as well! It was great having grandma be a part of all this!! Once we arrived to the theater and got settled in our seats I decided to take a quick cat nap! Mom kept tapping my shoulder trying to keep me awake but geez, it had already been a long day and it was nice and cozy inside the theater! I only napped for thirty minutes and when I awoke the ballet dancers were jumping and twirling across the stage! The lights, design, and costumes were amazing. I no longer wanted to sit in my chair but to sit on my mom’s lap! So for the rest of the play mom held me on her legs and I watched until the end of the Nutcracker!! Everyone was very nice to me and made special care that I had plenty of room to pass by! The producer of the play came up to me at the end and thanked me for coming. It was a very special night, and something we will definitely do again.. It was fun dressing up and going out on the town.

To me, the experience of going to the ballet, participating in the tree lighting, and picking up my grandma there could not be a better gift. The spirit of Christmas is not the gifts you receive but the love you give, the sharing with family and friends and the art of giving. Merry Christmas to all.
Love Malia,

November

December 2nd, 2017

November came and went so fast that I can’t believe we are already into the second day of December! I have been busy getting to know Roxy and adjusting to the new changes. Roxy and I are getting along great. She is very attentive to my needs and is such a big help. She is very sweet to me too which is always nice!

My seizures have been okay, not great but not as bad as before. Some fun things I did in November was to go to the beach with mom and dad and hang out with dear friends of ours. About a week ago I somehow caught a cold not sure how that happened as I had not been out of the house much at all except for strolls on the property and some beach time! I had a high fever for a couple of days but thankfully it went away! I have had to be on oxygen and getting lots of respiratory therapy and nebulization treatments but I am doing much better and coughing a lot. Very very grateful that we did not have to go to San Jose and that I did not have to take an antibiotic!

I am getting excited as both my grandmas are coming to see me, and my paw paw brown too…..We will all be having Christmas together this year which is the first time in a very long time! We didnt do a big Thanksgiving this year just had a few friends over… So grateful for so many things. Most especially my health and a decrease in seizure. I am also grateful for all those who love me so…..
Love Malia

scary!

December 2nd, 2017

Naty and Halloween!

October 31st, 2017

Halloween is always fun in my house! What a nice surprise for me as Natalia came to see me Monday. She is here for the next three days to help Roxanna with my exercises and of course just to spend time and hang out with me! My mom asked her where she wanted to sleep? She replied with Malia! So Naty and I got to cuddle together and sleep in my bed while she was here visiting! We had lots of fun, and Roxy did a great job and picked up very quickly on all the new exercises that Naty showed her.

On the day of Halloween, I was a sweet butterfly! Genesis came over and we had such a good time with Roxy and Naty making crafts! We did face painting, decorated cupcakes, carved out pineapples and made halloween lanterns! It was fun and later in the day our neighbors Chris and Susan came over dressed up in costume and we all had dinner together! We put on some fun spooky Halloween music and did the Monster Mash in the kitchen! What a great time!

The time spent with Naty was cherished. We will always be great friends. I am so blessed and loved.
Love Malia

Seizure Monster Go Away!

October 31st, 2017

For some reason my seizures have decided to get out of control. Having three grand mals in one day is unheard of with me and won’t be tolerated! I have put on my boxing gloves and am fighting back. It’s so cruel how they suck the life and air out of me. My day is ruined after having one of those. What went wrong? Where did we lose control? Why is this happening? I have been so good in so many other ways! We started seeing more seizures when I was in Texas. The gran mals started popping up one every other day. At the end of our trip in Texas, when we were driving to Houston I had one in my car seat. We had to exit and pull off the side of the road. When this happens it literally consumes me and it is very frightening to watch. Once we got back to Costa Rica, mom started investigating and asking more questions to our Pediatric Cannabis group.

It was suggested that I try to reboot my endocannabinoid system. You might wonder what that may mean! It seems through research and experience from others that the CB receptors can fill up and become used to receiving the cannabis oil daily. The system needs a reset. So that is what we did. My mom and dad took me off my cannabis oil for five days straight. The seizures began to get better. I started back up on my oil but mom cut it back drastically. It is called micro dosing and you know what? It seems to be working. I have had a great week with Roxanna, I am not sleeping in until noon. I am active, more alert and waking up at 10! It worked I have seen a 75% improvement in my seizures since rebooting my system. Now lets just hope and pray that it stays that way! Seizures are very hard to battle. They can start up over the smallest thing! I am just happy that I have had a good week and that I am feeling good again.

So seizure monster go away, leave me alone, and don’t come back please!
Love Malia