Malia Moore

November brought us some nice rains. It also brought me another cold and I am continuing to have seizures. I recently had one that is called a startle seizure. It is a new seizure to me. It look like at first that I am laughing and so you wouldn’t think it was a seizure but I can continue to do this for 15 or 20 minutes and it is not normal that I behave like this so we videoed it and sent it to our dear friend Kathy. Remember Kathy? She is the family friend that had a daughter like me who lived to be 31 years old! My mom will ask her first before calling a doctor! Experience goes along way and she agreed it looked like a startle seizure. It doesn’t help either when I am sick or constipated. It brings on more seizures.

We had a friend visit us from Canada, and after the third day that she was here she told us she didn’t feel well and that she had a cold. Sure enough the next week I had a cold. This time with fever and I was needing more 02. It was exhausting being sick again. Between seizures, colds and constipation I am not doing so well… I am not eating well either. I keep having attacks of nauseas and am not able to hold food down well. The decision had been made it was time to head to San Jose. This will be my first trip to San Jose in a long long time for me to see a doctor for being sick… I guess it happens to the best of us! Hoping all of this goes away soon!
Love Malia

October 26th 2015
Today Maria Jose, my PT for the last three years turned in her letter of resignation to my parents. This came as a surprise to our family. We did not know that Maria had plans on leaving us but then we all knew that at some point time it was bound to happen. Maria travelled every weekend to her home town of Cartago. This journey by bus took sometimes 7 to 8 hours. She made the trip every weekend as she saw other patients back in Cartago on the weekends, and of course her boyfriend of many years.

Maria Jose had been working with a patient giving water therapy at a clinic in the city for a few weeks. The administrator of the clinic was eye balling her and ended up stealing her from us. She took the job, and gave us a month notice. It was a hard blow to all. We understood we did, but how do you say goodbye? How do you let go? THREE YEARS of taking care of me, loving me, hugging me, bathing me, playing with me????? I was out of breath…. My MJ won’t be mine anymore. 🙁

Needless to say there were a lot of sad faces around the house. The month seemed to fly by. We interviewed four different girls for the position. We weren’t impressed. We kept looking. It was difficult too as I was still on oxygen and having to do respiratory therapy everyday so MJ was showing them how not only do you have to do PT work with me but respiratory as well. It really wasnt the greatest situation. I was tired too from being sick. Maria Jose was receiving all the resumes and many many people applied for the job. However once explained exactly what my physical therapist does with me on a daily basis the number of people interested began to dwindle. It takes a very special person you see to be able to work with me. You may ask what does my PT do? Well let me tell you……

MJ would come to work Mon thru Thursday from 10 to 6pm. She bathed me and got me ready for the day, then we would do therapy for a while or arts and crafts, and then it would be lunch time and she would feed me which takes almost 1.5 hours.. After that it was relax time or nap time. Once I woke up we were back at therapy again for another hour. Then it would be time for a sunset stroll or a ride on my horse! After that it is pajamas,and teeth brushing. That is what my PT is supposed to do with me everyday but on some occasions it is respiratory therapy, poop therapy, massage therapy and more. My therapist ends up learning much from me. Maria Jose, came here three years ago as a physical therapist, but she left as a equine therapist, swim therapist,Bobath therapist, respiratory therapist, and much more….. Will she be prepared for anything when she has her own child? Yes she will. She will know how to face trying and stressful circumstances with strength and patience. It makes me happy knowing that I gave her insight and knowledge while working with me.

I will always hold a special place in my heart for her and I wish her only the very very best. Thanks MJ for loving me the way you do, for believing in me and for always treating me like any other kid. You have no idea how much that meant to me.

Malia

My Grandpa and Gammy came to visit me. It has been almost three years since they have been to Costa Rica to see me! They have not seen my new house yet! It was so great to have them here! I did catch a cold for the first time in years while they were here but we are able to treat at home and did not have to make a move to San Jose thank goodness! I had to be on 02 for a few days, but with tylenol and lots of respiratory therapy I was able to shake the cold on my own and was feeling good again in about ten days!

We celebrated my grandpa’s birthday while he was here! He turned 78 years old! We had a special dinner for him and Gammy and had lots of fun listening to old music! He loves Ranchero and Marriachi music! He can still cut a rug too! He and mom danced together in the kitchen! It was fun to watch them shake a groove! Grandpa still got it in him! I wish they could have stayed longer but was so happy they came!
Love Malia

October finally brought us some rain. It has been a very dry winter with hardly no rains at all so the water was welcomed. October also brought many seizures. They have started up again and I don’t like them at all nor do my parents. 🙁 It turns out that Charlotte’s web the oil I have been using for two years to stop my seizures has changed. CW can be shipped in all 50 states in the USA. The Stanley Brother’s corporation Realm of Caring lowered the amount of THC to from 0.3% to 0.1% and due to this minor change I have begun to have seizures more frequently.. Many other friends of mine have experienced the same problem. 🙁
Seizures are terribly exhausting mentally and physically and I am having about four to five a day. I have started a new oil and am hoping it helps. Besides from the nasty seizures bugging me I have been pretty good except for at the end of the month I spiked a fever… Hoping it is nothing.
Love Malia

Thankfully our flight home is always in the evening that gives up plenty of time to pack up the many suitcases and medical equipment we bring with us each year. We are so thankful to everyone who helped us in our journey and all the love and support we received at the benefit.

Flight on time, and all is well. I needed a little 02 on the flight but not too much. We arrived San Jose at 8pm and are staying at our dear friend Krystal’s house. We are happy to see her Jazz and Valentino… They are our second family in Costa Rica! Good to be back in Costa Rica!
Love Malia

Monday morning we packed up the rental house and headed North to Dallas…. We dropped Aunty Kathy off at the airport back to Boston she goes… We were sad to see her go. My new friends Andrea and Joey came by to say bye to me and my parents.. It was so special having them there it really meant a lot to us that they travelled so far to come and meet me.

It was noon by the time we hit the road… We showed up at Uncle George’s around 4 pm and then we were out the door to George and Katie’s favorite Mexican restaurant Mi Cocina. It was fun we had a great evening!

The follow morning our dear friend Jennifer Mckeough drove all the way from Houston to Dallas to come see me and have lunch with my mom..She is such a great friend and near and dear to our hearts! Wednesday we fly back home.. I have had a great time in Texas I always do but sure am ready to get home to my comfy bed and to take a shower in my shower chair! I have missed both of them!

Love Malia

Every year a fabulous group of people get together to support me and help me raise awareness of Lissencephaly. None of us can believe that 7 years has gone by! The wonderful people of Opal’s Divine’s Michael and Susan Parker let us get together at their place to celebrate and raise money.

This year two new Lissecephaly Mom’s came Andrea Steppl and Joey Payton. Andrea has a son named Jack, my mom and Andrea have been talking for years now over messages on Facebook! Joey, lost her daughter Stella to Lissecnephaly this year. We still have her picture on our fridge. She was very pretty and sweet. She is flying high with the other Liss Angels now.

We had a great time at the benefit and we managed to raise $27,000. We will be donating $5000 to research of Lissencephaly… All my cousins came to my party! Everyone loves getting their faces painted. Just want to say thanks to so many of you who helped with the benefit and the wonderful silent auction items that were donated. I am so blessed to be loved by so many.

Until next year.
Love Malia

This is what I look forward to when in Texas. Spending time with my family.. Living in Costa Rica is great but we miss out on alot of family gatherings and fun.. If I could make the journey back to Canada I would. Am just grateful for these moments that we get to have when back in Texas!

I am very excited about seeing everyone! We took a leisurely drive down to Lockhart. Only had to make a few stops on the way!!! We are going to see granny,paw paw,uncle Jesse and Aunt Debbie first! Then on Thursday we head to Wimberly to see my Uncle Don, Aunt Shelley and my cousins! Then on Sunday we pick up MJ at the Austin airport and are off to see my other grandparents Gammy and Poppy down in Hope Texas! During all this we are going to go to Morgan’s Wonderland on Saturday! My favorite park to go in San Antonio Texas!! It’s a full schedule ahead but it will be fun!!!
Love Malia

Pit Stop!

October 12, 2015
Today is George and Katie’s wedding. We are so happy to be here and be a part of their special day. It is a beautiful day here in Dallas Texas. We have been so blessed to be able to stay at our dear friend Janet Mitchell’s house. She just finished having her home remodeled and was so kind to give us her home. She moved out and stayed at a friend’s house! How special and sweet is that?? We are so blessed to have so many special friends!

The wedding began at 6pm. It was held in a beautiful church. We saw George right when we walked in and got a quick hug before we were seated. The service was lovely. I sat in my mom’s lap during the ceremony. Granny and Paw Paw Brown rode with us and Janet met us there. Katie was a beautiful bride and George so handsome..And Grace!!! She looked gorgeous!! After the service the reception was being held at the country club. We had so much fun! Mom took me out on the dance floor and spun me around. The music was good but loud by the end of the night I was having a hard time catching a nap so dad took me to the front of the club where I could get a quick shut eye! We ended the night pretty early and were back at Janet’s by 11pm!
Love Malia