Archive for August, 2017

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