Malia Moore

December 3rd 2014
Today Maria Jose and I celebrated two years of being together. Maria has been with me through thick and thin. Thankfully in these last two years I have not really been sick! Only three times to the hospital in two years is pretty good! It takes strength, tenacity, patience, and tons of love to be my therapist. Maria has all these qualities and more. She is originally from Cartago. Cartago is a city 25km east of San Jose and it is 1435 meters above sea level. It is quite a different climate than here. In Cartago people wear sweaters!!! Maria takes the bus to get out here, it is a long journey and takes about 6 hours after taking the ferry, taxi’s and bus. We live in the jungle where there are definitely more critters around than in the city, and Maria is used to living in the city where there are malls, movies, shopping and more. She has adapted very well and even though she prefers the cold she has become used to the hot of Delicas and she definitely likes the beach! 🙂

Maria Jose is more than just my physical therapist. She is my best friend. She not only pushes me to be the best I can possibly be she loves me dearly. She bathes me, does my hair in a million different ways, she feeds me my lunch, we read books together, make cards together, walk together, and sometimes take naps together. Even though I do not communicate verbally I do communicate with my eyes, with the sounds I make when happy, sad, or mad! We know each other very well. I am grateful to have her in my life I am doing better than ever physically and you should see my thighs right now!! They are muscular and strong. I have been doing more and more different exercises lifting from my trunk to a sitting position. I know that maybe just maybe someday I might sit on my own. One thing we have is faith in each other. She believes in me and I believe in her.

Maria Jose has a silly side too, she likes to push the back of my chair really fast and stand on the back of it as we sail through the living room. She likes to push me down in my stroller on all the bumpy parts of the road while I kick my feet and legs and laugh. One thing for sure even though I am special I am involved and try to do all the things that other kids do too! I never get left out, Maria and my parents make sure of that. I hope you know how much I love you Maria. Thanks for being so kind to me, for being my friend. I look forward to this year together.

A quote for Maria Jose,
“A best friend is someone who won’t judge you, who loves you for you, and most of all makes you feel like you are worth something!”

Love Malia xoxoxo

November 27th, 2014
So many things I am thankful for today. I am thankful for my health and for my family and friends who love me so much. I am thankful for all the love my parents shower on me and all things I am so fortunate to have. I am very thankful for Maria Jose who is my best friend and my phsyical therapist. She and I have an incredible bond and we are the very close to each other. Even though I dont speak with my lips I can speak with my eyes.

November has been a pretty good month. I have had a few nights where I could not sleep but over all I am sleeping better. My seizures have come back to bother me. Thankfully I am not having as many seizures as before but I am definitley having them on a daily basis. Since the antibioitcs I took when I had the that terrible UTI infection I began having the seizures again. It was a main side effect of the antibiotic… Is such a bummer as we had three good months without any seizures. We are striving to get back there and to get rid of those seizures over all. It is a hefty goal but one we will take on with full force. 🙂

My Great Uncle Carl came to visit for a week with his good friends Marci and Steve.. They were so sweet to me. We had much fun hanging out with them and visiting them at Kalapiti’s. It was a great time.

Today we are having our friends over to celebrate with Thanksgiving with us. I am looking forward to seeing everyone especially Naia she is a buddy of mine! I hope all of you had a great day today and that this holiday season is a blessed one.
Love Malia

October 27th

We found out from the lab that I indeed had a bacteria growing. Klebsillia Pnuemoniae, have had this before and it went into my kidneys! However I am feeling good and have no fever. My Infectious Disease Doctor told me that I had to come into San Jose for an ultrasound to rule out any suspicious activity of the bacteria identified. We really did not want to go to San Jose again after just getting home but she insisted and said we had to do it, even though I was feeling well. Better safe than sorry! One good thing is that she agreed to me not take antibiotics only if I had a fever.

We took the Monday ferry at 11am and went straight to CIMA for my ultra sound. I slept most of the way! The doctor who did my ultrasound said everything was functioning properly and looked great. There you go! I got a clean bill of health on my kidneys which means that the urine sample must have been contaminated. It happens sometimes. We took advantage of being in the city and scheduled a 6pm nuerologist appointment. It was time for my six month check up. Dra. Hernandez was very happy with me and how well I am doing! She was very impressed!! We headed back to the hotel by 7pm, had some dinner and went to bed! The next morning we were out the door by 9:15 am to catch the 11am ferry. We had a whirlwind trip! In and out and back home within 36 hours is pretty darn good!! I did great on the trip and we were all very glad to be back home again!!
Love Malia

October 12th, 2014

We flew out two days after the wedding. On Monday the day before we left I was not feeling so great and spiked a fever of 102. My parents were concerned it might be another urinary tract infection. We were all just hoping I would be okay and ready for the trip home. The temperature dropped drastically the day of the wedding and the ragweed and pollen in the air was very high! Who knows maybe it is allergies. The day of our departure I woke up without fever so that was a good sign. Since we waited around for the wedding to happen we would not be driving back to Dallas to catch our flight but instead fly to Austin then Dallas and on to Costa Rica. My parents try not and expose me too many people and prefer to drive to Dallas rather than take the short flight from Austin to Dallas. However we were brave and decided to do it this time! We as well come with much luggage, car seat and a wheelchair so it can be complicated. The good thing is my dad is an expert on juggling and carrying all our luggage. He’s the best!

On a side note we got to fly first class! A dear friend of ours upgraded our tickets for us so that we could fly first class back home! How awesome is that?? Once we got situated on the plane and we were ready for takeoff I had a small accident! You know how I am constantly complaining about not being able to poop? Well this time I did not have that problem!!! Huge poop explosion, wet clothes, complete change of clothes and all in thatin a teeny tiny bathroom. Talk about embarrassing! Just imagine me and mom in the tiny bathroom and at one time my dad was in their with us with the door closed! We were like sardines in a tin can! We made it to Dallas on time and were ready to board our main flight to Costa Rica… My parents thinking that I had gotten everything out of my system from Austin to Dallas but boy were they wrong! During our main flight and actually right during everyones dinner I decided to do it again and then again. Whew, my parents were up and down and up and down with me!!! Just when they thought they were enjoying first class…… whamo Malia strikes!! Sorry mom and dad but I couldn’t hold it!

About three quarters during the flight I began to breathe a little heavy. Mom checked my 02 and I was down in the low 90’s and high 80’s… Time for some oxygen to help me breathe better. It is so nice to be able to connect right away to my portable oxygen concentrator. I stayed on 02 for the remainder of the flight and until we got back to Krystal’s. At this point in time I was exhausted, and getting cranky. Mom took my temperature and it was back up to 102. While dad unloaded the luggage from the cabbie my mom changed me and put me in my jammies. In order to change my shirt mom had to disconnect me from the 02 to get the hose through my jammies. She put on my jammies while talking to Krystal and got me ready for bed. Dad came in later and I could not go to sleep. Mom kept checking my 02 and it was showing me at 85 on 3L of Oxygen. They started immediately respiratory therapy, and nebulization treatments to see if I would cough to clear my lungs. This went one for a good hour and mom texted the pediatrican and respiratory therapist telling them it looks like we would taking an emergency run to CIMA if I could not get my oxygen up. Thing is my portable oxygen machine maxes out at 3L so there was no possibility of raising it up! Just when they were thinking to leave to the hosp as I was not getting any better dad notices the hose was never reconnected to the 02 machine!! Uh oh….. momma did not hook me back up!! I got reconnected to the 02 and on only 1L of oxygen I was at 95.. Mistakes do happen, and it had been a long day.. Mom messed up but we love her and forgave her and I was breathing fine. I slept pretty good that night!

The following day my parents had made up their minds to have blood work and a urine culture done on me. Nobody wanted to get home to find out that there was something wrong with me and have to turn back to San Jose. It was the smartest thing to do but not the most favorable. We all wanted to get home. We went to one of my first phlebotomist (blood sucker) as she worked close by to Krystal’s. She did an outstanding job on drawing my blood. She got it on the first try and I did not even flinch. So that was good. The next step was getting my urine and my good friend Carmen came to Krystal’s house to cathetherize me. My blood work came back with a semi-high C- Reactive Protein. For those of you who don’t know what means your C- Reactive proteIt appears in higher amounts when there’s inflammation somewhere in your body. So.. the next thing we had to do was wait 24 hours to see if anything was growing in my urine. Turns out something was growing however my fever went away and had not come back in over a day. I was in good spirits as well.

The doctor decided to give us the green light to go home. It is always a possibility that the Urine culture is a false positive. It would take another 24 hours to identify what type of bacteria. We jumped on the permission to go home and that afternoon we loaded up the car and off we went to Delicias. On our way to the ferry we began to smell something like rotten eggs.. We had just arrived to Puntarenas the port town where the ferry leaves from. We could not figure out what could be that smell. We had just had our car at the mechanics getting tuned up while we were gone. Once we arrived on the ferry dad lifted the hood and there the smell was overwhelming. Our battery was burned to a crisp….Melted. After a few phone calls were made we had someone meeting us on the other side of the ferry with a new battery. We had to be pushed off the ferry once we arrived in Paquera. We took out the burned battery put in the new and off we went. A small inconveience but then it could have been much worse!

We were sooooooo happy to be home at last!! The puppies were crying and the cat purring! It is good to be home…. It seems like forever since we have been gone.
Love Malia xoxo

Photos to follow……..

Click here to see my photos on Facebook!

My Uncle Jesse married on October 11! He and Debbie asked me to be in their wedding. I was the ring bearer! My cousin Tory was one of the bridesmaids and she pushed me down the aisle! I was excited as it was my first wedding to attend and participate! I had a very pretty dress and black boots to go along with it. During the ceremony I was very excited and kept kicking my feet! I kicked them so much that I kicked my boots right off and onto the floor! I was definitely drawing some attention.
After the wedding we had much fun and were able to see many family and friends. I was a bit overexcited from all the music, people, and lights! We ended up leaving around 10pm my parents knew it was going to take me awhile to get to sleep. I felt very honored to be in their wedding and was very happy they asked me!
Love Malia

After the benefit my parents, grandma, and my Aunt Kathy all went to another rental house in Austin. We downsized to something smaller since it was just the 5 of us! It was a cute little house in South Austin. It was nice not to have to rush off anywhere. One night a big group of us got together and went to Shady Grove. It was a lovely night out with a fresh cool breeze in the air. We all sat outside and had a great evening together. We also ventured out and went to Barton Springs. It is a lovely place with big beautiful oak trees lots of grass to sit and a fabulous all natural spring fed pool. The water stays at 60 degrees all year long. Many people really like it that cold like my dad and Andy but it was way too cold for me! Us girls hung under the Oak’s. By Wednesday it was time to say goodbye to Kathy and Grandma. They were headed back to Boston and Canada. I was so happy they came and we were able to share some quality time together! 🙂

After we packed up the house and said our goodbyes my parents and I headed South to my grandparents. We are going to stay with me Papa and Gammy. I love going out to their ranch. It is beautiful filled with gorgeous oaks, a lake, cows, and plenty peacefulness. We always stay in the bunk house which I love. It is super cozy and quiet. I have been doing really well since the benefit and feeling good! 🙂 My parents bought me the Upsee Walker. You may not know what that is as it is quite new. A mom in Ireland invented it as her son had Cerebral Palsy and could not walk. So she invented a special walker. We tried it out for the first time at my grandparents. It was simply amazing. I was up and walking. There is a harness and a special type of shoe that connects to my mom’s shoe or whoever is walking with me like dad or Maria. It was the coolest thing ever! It is so different up here! I was holding my head up hihg and looking around at everything. I really liked it. It gave me such a feeling of empowerment and freedom. The dogs came right up to me! Am so grateful to this woman. How could I ever repay her for allowing me to feel like this, I am happy kid today and I cant wait to keep on walking!!!! I was pretty proud of myself for not being afraid and not once crying!!!

On Saturday, we went for a day trip and headed to San Antonio to go to Morgan’s Wonderland. We met Maria Jose and my other grandparents at my great great grandma’s place. MJ had been visiting family in South Carolina and had just arrived back to Texas the night before. She stayed with Granny and Paw Paw Brown and they took her to my grandma’s. It was great to see grandma as well! We make a special effort every to go and visit her. She is 96 years old and loves me to pieces. 🙂

We finally got on the road by 11. We were meeting Daphni and my friend Connor at the park at 1pm. We would have made it on time minus my poop explosion that made us pull over and get changed in the back of the car! I like to keep everyone on their toes! ha ha! You may recall I went to Morgan’s park last year. This year I am stronger, more aware and ready for the rides! The first ride we went on was the merry go around! This year I was able to sit on the zebra all by myself. Well I did have a little bit of help!! What a great feeling! I had the wind in my hair, the music in my ears, and the sensation of going up and down and round and round all by myself!! I am really doing this and you know what I am smiling! I am a kid just like any other. I have no boundaries today. Our next ride was the Off Road adventure 4×4 jeep trip!! MJ let me sit in her lap and drive the car!! I had my hands on the wheel and we were off on our adventure!! It was much fun!

The fun did not stop there! Oh no, MJ was determined to go down the slide with me! My mom was a wee bit nervous about this but she trusts Maria Jose. My dad pushed me up to the top of the slide while MJ got settled then she put me on her lap and held on tight to me and down we slid. Mom was videoing you can hear her squeal when we came down!! After that the swings, first time ever I was swinging by myself. I so much enjoyed swinging… My parents are talking about getting one for my backyard in Costa Rica! It would be awesome! Nothing like swinging through the air! We then took a break and went for a train ride. Connor is doing really well. We had fun together in the sensory room. We were sitting next to each other watching the butterflies and he reacehd out for me! He is really sweet. We then went to the fishing pond and just hung out there for awhile. It was really nice, a beautiful day and fun was had by all!!! The afternoon was ending and so it was time to head back to my grandparents. I love the man who built Morgan’s. He had a special daughter too..His park allows me to be a kid just like all the other boys and girls and I am grateful to him for that.

We headed back to my grandparents and had a lovely dinner with them and the enjoyed the weekend riding around in the cart and checking out the scenery at the ranch…. It was super windy but it was fun.

On Monday we went to my other set of grandparents, Granny and Paw Paw and hung out with them for the week. I went walking again this time with my dad and Maria. I am really liking this walking around!!! It was a great week. Only a few more days till the big wedding. I am getting excited. What a great trip this has been so far.
Love to all
malia

September 27th 2014
Today is my benefit!! I can not believe that we have already celebrated 6 benefits!!!! The day started off cloudy and it actually rained during the afternoon, many had doubts it would continue but I knew it would not rain on my day! At 5pm the sun came out and the most beautiful sunset was showing its colors at Opal Divine’s. This years benefit came together quickly. We do a pretty good job of setting up the silent auction room and getting everything ready flows well!

Maria Jose did a great job of getting me and her ready for the day as mom was at Opal’s helping set up! Dad stayed behind with Uncle Andy and Grandma Marg to chauffeur us to the benefit! The first band playing was Son y No Son, a latin band that makes everybody want to move.. The same muscians play for me each year. Am so blessed that they want to play and play for free. The bands, Two Hoots and a Holler, Redd Volkaert, and Twilight Trio are very popular bands in Austin! Everyone enjoys listening and dancing to them. Maria Jose had be dancing away in front of them. We had so much fun together. My mom and dad were off visiting with everyone and friends would swing by to vist me and MJ. It was very busy and many friends and family turned out for my party!

In regards to raising money, it was the best ever!! We will donate $4000 to research and the rest is going to buy me a wheelchair accessible car!! 🙂
Thank you all who came and contributed. It helps so much.
Love Malia
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