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

Roxy!

October 31st, 2017

Roxana Vargas comes from Perez Zeledon, she recently graduated from nursing school. Due to the nursing industry in San Jose and surrounding areas it is difficult to find a full time job in nursing and thank goodness for us! :)
Roxy was one of the last girls to be interviewed before my big trip to Texas. She is 24 years old smart, funny, and Vegan. We hired Roxy a few weeks before we left for Texas. She has been with us now for a month! Roxy is very sweet and a fast learner. Although she is not a physical therapist she has learned many of my exercises from Natalia and in this last month we have been working very well together. The most important thing is that we get along great and she shows me much attention and love.

Change is never easy, but it sure makes things better when someone kind and caring like Roxy comes in to fill the shoes of my dear and great friend Natalia Mora. Each therapist has been awesome and amazing in their own way, they give their time, energy, and love to me and that really is all that I ask for. I am so blessed to have such amazing women come into my life. I am looking forward to this new year with Roxy and the many adventures we will have together.

Since it takes Roxy almost 12 hours to get back to her family she is only leaving the finka once a month. Roxy likes to garden so she has plenty of plants here to garden with! Welcome to our family Roxanna! We are happy to have you on board our team! I am looking forward to getting to know you more and more each day!
Love Malia <3

Lara Price singing to me!

October 12th, 2017

Benefit fun!

October 12th, 2017