Archive for October, 2014

Tio Jesse’s Wedding!

Friday, October 31st, 2014

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

Excursions, walking and more!

Friday, October 31st, 2014

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

6th annual benefit!!

Friday, October 31st, 2014

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
The

Boarding Time!

Thursday, October 30th, 2014

Texas here we come!

The Journey to Texas!

Saturday, October 25th, 2014

Once mom and I arrived home from the hospital we both took the rest of the day to rest. My parents had changed our plane tickets from Monday to Wednesday. We all agreed it would be too much to take me straight from the hospital to Texas without having a chance to go home and at least recuperate a few days before my big journey. Saturday the unpacking began and Sunday the repacking started! Many of you know that I have quite a few items that I have to take along with me. Such as my 02 machine, aspirator, nebulizer, respiratory vibrator, hoses, syringes, medicines, and much more… My medical box that we take with us weighs almost 50lbs by itself! Needless to say when we travel we travel with alot!

Tuesday arrived here quickly. We were ready to begin the journey! We caught the 2pm ferry and headed to Krystal’s! We had a early flight Wednesday morning which had us leaving Krystal’s by 5:30am the following day. So far so good. I am feeling good and ready for this trip! We arrived to the airport with no problems and check in went smoothly!! American Airlines always lets us preboard first as we do take a little time! :) The fligt is just over 3.5 hours. I am getting excited about seeing George, Gracie, and Scout! We wont have long to stay with George as we have to head to Austin the next day! We will be staying with Uncle Andy for a night before we check into our rental home. My grandma Marg, Holly, Mark, Ella, and Kathy all fly in on Friday! We really were cutting it short this year coming in so late and the benefit being this Saturday September 27 2014!

We arrived at George’s house late afternoon. Mom and Maria Jose wanted to go shopping so dad stayed with me and we took a nice nap together! Mom had to go and buy all my food to make since I eat three different types of grain, Aramanth, Quinoa and brown rice! She had much cooking to do for me! I am doing so much better on my new diet! That evening my parents, George, Janet and Katie went out to dinner at Mi Cocina, mom’s favorite mexican food restaurant and MJ, Grace and I stayed at home watching TV. I was in for bed early! It has been a long day!

Thankfully my Aunt Theresa is loaning us her car like she does every year! The mini van was waiting for us at George’s house. She is so kind to us!!! It is a huge help and gigantic savings for my parents not to have to rent a car while we are in Texas. Thanks again Auntie T!!! We are truly blessed with all the loving family and friends we have in our lives!!
Malia :)

Passing time at CIMA

Saturday, October 25th, 2014