Archive for the ‘Uncategorized’ Category

Naty! <3

Wednesday, August 23rd, 2017

I have news to share! My beloved Natalia is leaving us. She has been with our family almost two years and let us know in February that is was time to let her wings fly and go pursue her dreams with her family. This was not a surprise to me as Naty told us when she started to work for us what her plans were! She actually only committed to a year, but I am so sweet and convincing she stayed almost another! We are so happy for her and know she will go on to achieve excellence as she has done with me, and continue to be the great therapist, woman, and friend to our family as always.

Naty came into the picture with big shoes to fill after having Maria Jose work for us for nearly three years. Naty came in like a rock star. She had no real training from MJ on how to work with me. I was sick when she started and MJ had already started her new job. With time and lots of patience she gained my trust and more especially my heart. She has taken extremely great care of me and has helped me to grow and acheive new heights that again the doctors told me I would never achieve. Her creativity has never failed! I now can give high fives before starting my work out, I am a master card maker, I continue to be the best I can possibly be and I thank you Naty for pushing me to my limits. You make me smile, and you help me get over being cranky when I feel down. Most especially you believe in me. Thank you for being you and for being such a huge part of my life. I know we will be best friends forever.

It is never easy finding a replacement, especially after having some of the best women I could possibly ask for in my life. After much discussion, we decided to open up the field to new people such as nurses and patient assistants as well as physical therapists. We began the search in March. We have been through many resumes and a few interviews. The majority of people that applied were nurses. Their field is saturated and many are looking for jobs. The person we have been looking for is one that can wear many hats. Naty has not only been my PT, my caretaker, nurse but she is my friend. She spoils me rotten, reads to me, sings to me, and plays with me. You have to have many qualities to work with me. You must also like the jungle and living far away from home. It is not a job for many but God has always sent us the right one.

We recently interviewed a girl named Roxanne that completed nursing school a year ago. She has been here this week in training as she passed the first test which was a day with me. The very first thing I liked about her is that she talked directly to me. Although I may not talk, I do hear and understand. It means everything to me when you ask me if you can do something to me, and when you talk to me with interest. We like her, she has a nice smile and more than anything she has the will to learn. She knows that she will use her nursing skills with me but she also realizes that she will be learning new skill sets. I like to think that I am a great teacher to many. I will show you many things, I will open your eyes to many circumstances but mainly I will show you the meaning of love and compassion. Roxanne is currently learning from Naty all my exercises, stretching, and activities we do in a day. With many prayers and the right feelings inside we have decided to take the plunge and hire her.

Naty will come with us to Texas for my benefit! Yeah! 🙂 After we get back Roxanne will begin working with us on a trial basis. We all feel she will work out for our family. We can only hope and pray she likes working with us and living here and that she and I can connect on a very special level. For now, we feel she is a good fit. Naty has done a great job this week with training Roxanne. Naty’s patience, dedication, intelligence, and passion for her job shows in every way and Roxanne has been open and willing to learn. She has done great this week.

I have been quite phlegmy for the last two weeks but with lots of therapy and working on my lungs I am confident that I will be in tip top shape for my trip. There has not been a day that has gone by that we have not stopped continuous respiratory therapy! They enjoy beating on me! Ha ha! Seriously though, the consistent respiratory therapy helps to make sure nothing sticks to my lungs and gets me sick….

It’s a big deal for us this journey, but one we are happy to make. The love and support from family and friends that come and support me and help with my benefit is always overwhelming. We continue to raise awareness and support my cause. We fly out in two weeks. Prayers appreciated for me being healthy and ready to make my trip. God willing everything will “be alright”. As Bob Marley has always sang to me and many others…. “Don’t Worry About A Thing, because every little Thing is gonna be alright. 🙂
Love Malia

The seizure monster creeps back

Wednesday, August 23rd, 2017

Since this beautiful month of August has started much has happened. Seizures have been under decent control since we put Sabril back into the mix. However recently they have come creeping back. Some have been grand mals,others have been less intense but the nonetheless they have snuck back into the daily routine. They usually are bugging me when I wake in the morning or randomly out of nowhere my body will jolt. None of us understand how we can go for a few months with such great control then out of nowhere without changing anything different I am back to having them! Anyway, we are dealing with it as we always do and praying they go back away. We appreciate any extra prayers that they go away! I have a trip coming up soon to my big party in Texas and need to be in tip top shape!
Mucho Amor,
Malia

Family and Friends!

Wednesday, August 23rd, 2017

July

Monday, July 31st, 2017

July has come and gone. Amazing to me how fast time really does fly. In all reality, I can’t believe I am nine years old. Where did 9 years go? I can tell you that in the last nine years I have been through many challenges, setbacks,sicknesses, and triumphs. When you are born into this world and a doctor tells you that you may not make it to two years old you realize how valuable time is to your life. Here I am fighting along the way to be the best I can possibly be and try and prove to the doctors they were wrong about me. Since time here on earth is so precious I try to send a message to my parents not to worry about me, not to fret about the future that each and every one of us have a certain amount of time here and the best thing we can do is to just enjoy each other and each day that comes our way.

I feel so blessed as I have been surrounded by family and friends. July is always a great month for visitors! Aunty Kathy, Grace, granny Claudia, then Paw Paw Brown, Holly, Mark , Ella. We have had a wonderful time and have had some fun excursions to the beach and out to dinner. I love getting out it does my spirit good. There is nothing like time spent with those you love. Ella and I had fun together, she is so very sweet to me. Mark was always playing with me and singing me little songs. Holly gave me much loving and Paw Paw too. So blessed to have such great friends who love me.

Countdown is on for Texas, we will be leaving here in six weeks. Time will really begin to fly now.
Love Malia

Super ME

Monday, July 31st, 2017

Birthday fun!

Monday, July 31st, 2017

Birthday pics!

Monday, July 31st, 2017

9 YEARS OLD!

Friday, June 30th, 2017

June 17th 2017

Today I turned 9 years old! We are having a super hero themed birthday party for me and my dad! We decided it would be pretty easy for me to dress for my party! I did not have to pick a super hero to pretend to be since I already am one! So we decided the letter M would be theme for the day and I wore my super hero shirt with my M on it and a cape! We had so much fun that day! I was in good spirits although when MJ was getting me dressed for the day I had a small grand mal. I haven’t had one in such a long time and probably was just letting out some much needed energy before my big party!

The best surprise I had for my party was seeing the costumes of Natalia, Maria Jose, and Irene! You know how batman needs a robin well I had three of them! As a matter of fact the girls had t-shirts made that said Malia’s three little birds! I was pampered all day by three of them! A girl could not get enough attention that day!! Many people came in costumes! The fact that so many people came to celebrate me and my dad made me so happy! We actually had nice weather that day as it had been raining for weeks! It only a rained a little bit and then the sun actually came out and shined for a bit!!!

Natalia had a bunch of fun games planned! One was sack races, and Natalia and MJ actually put me in one of the sacks and hopped me along! They are crazy and never wanting to leave me out of the fun! I did have a crazy look on my face that said what are you doing to me???? ha ha!

The cake my mom made was awesome! A big letter M, and Naty made me a huge piñata made into the letter M. My dad helped me hit the piñata and we did really good together as a team! The candy was on the floor in no time! Everyone gathered around and sang us happy birthday and there were so many gifts to open that we waited until the following day to open them all so I could enjoy every moment! So grateful to have so many that love me! Cant believe next year I will be 10! Just taking it one day at a time though and I am very happy to have this birthday and to celebrate my life and my dad!
Love Malia

June 1-15

Saturday, June 24th, 2017

June 1 2017
Overall I am recovering nicely from the SIBO. My seizures are less, I am sleeping again and gaining weight and energy. I am not sure if I told you that I had to put back in Sabril, the seizure medication I weaned off of back in January. It turns out that in conjunction with Keppra and my two oils the Sabirl really does help with my seizure control. Since putting it back in to daily routine my seizures are back under control and I am not having them as intensely as before. We tried. My mom and dad wanted to give it a shot to see if we could get rid of the Sabril, but my body told them for me that it is better to keep it in! In reality only having to take two pharmaceutical seizure medications is pretty good for a kid like me!

Aunty Kathy came to see me on the 7th! I am always so happy to see her! She always reads books to me and talks to me and brings me all kinds of cool gadgets to help me think more! It is very special to spend this time with her!

Natalia went to San Jose for a week on the 12th for a course that she is taking in San Jose. Tziru and Maria Jose came to take care of me while Naty was away. Tziru came that Monday and it was so great to see her. She has such a sweet spirit! She is my yoga instructor. She is always talking to me and reading me books when we are not stretching and doing yoga! On Wednesday, MJ arrived. We had the best time together we are definitely two peas in a pod. We did lots of cuddling and working out! My birthday is June 17th and my dad’s is on the 15th! I am so excited. It is going to be a great weeo my birthday party! I will be nine years old! Dad and I are having our annual duo birthday party! Cant wait!
Love Malia

Recuperation time!

Wednesday, May 31st, 2017

May 8th
It was great to be home and back in my bed. I was not having too many problems with sleeping. I was definitely not myself though. It takes a while to get my tummy back on track. My mom was desperately trying to find out more information on SIBO and how we can avoid from this happening again. Mom joined two different SIBO groups on Facebook. There are over 8,000 members. Mom was looking to others for advice and we were also hoping that we could find a Naturopathic Doctor who could help us. Naturopathic doctors are not cheap! One doctor we found charged $7,000 for a three month program. We found someone that was recommended out of Colorado, and mom scheduled a video chat with her. She suggested some supplements and a prokinetic called Iberogast. This is a herbal remedy out of Germany and helps with the symptoms of SIBO. I am going to stay on my formula for a while and not eat my chicken and potatoes until after six weeks of the antibiotic I was taking. It is a long road to getting myself back a 100% but I know I can do it!

After being home for 10days my mom left for Texas to go to my cousin Casey’s wedding. It was something she had planned for a while! Dad gave her the thumbs up to go and she left for 5 days while Dad and Naty took excellent care of me! I was getting better each day and hoping it stays that way.
Love Malia