Archive for September, 2013

Hope Texas Day 10

Thursday, September 19th, 2013

Hope Texas,
I love going to Gammy and Pa Pa Shroyer’s house. They live on a big ranch and it is so open and spacious. My grandpa surprised my mom and asked her to come with him to the barn. There he called for Pina! Pina is Pa Pa Shroyer’s work horse that he has had for 16 years and Pina is 25 years old! I am going to get to ride a different horse! The next morning, I was pretty sleepy. As a matter of fact I slept in till noon. Then we had lunch, another nap and before you kow it was 4:30pm and time to go for a ride. Seizures have been bothering, seem to be happening again every time I wake up…This does affect my energy level but I was ready to give old Pina a try!

Pina seemed to be more alert than Conejo. She was not sure about the applauses everyone was giving me as I was doing such a fine job with her and Maria. She is bigger than Conejo and wider. Pina did very well her first day with me. It was so great riding her. MJ did a great job too! We even trotted a little. My grandparents were watching me and were very proud. They were so happy to be able to see me ride on their property. After we rode for over half an hour Pa Pa brought out a bridle and reins for MJ to go on her first bareback horse ride! She did great and is a natural cowgirl! She even galloped with Pina!! We all had such a great time! I perked up after the ride and was feeling good! I really enjoyed it!! We had another great evening together.

The next day I again slept late. Everyone was waiting on me to wake up so we could go for a drive in the golf cart around the ranch. In the end, mom got tired of waiting and scooped me up in my pajamas still sleeping! It was already 11:30 am. We drove all over the property and went to feed the catfish in my grandpa’s tank. I still kept sleeping. Matter of fact I never woke up for the tour and when came back to the house I still had my eyes closed. I know I am worrying my parents, it is my job to make them worry! Finally I woke up and then it was time to feed me! I am not getting much of a workout simply because I have been sleeping through my morning workouts! Later that afternoon, after my nap I had a pretty big seizure… The first 15 minutes were strong and hard and then I continued to have small ones for another 30 minutes.  After that we waited a bit and out I went to ride Pina again. Today I did not do so good. The seizure wore me out and I was really not in the mood to be riding. MJ sat me on one side and we just rode around like that for a while.. I had no desire to work my head, neck, and back muscles so we just rode around muy tranquilo. After my ride, my grandpa brought out a saddle for MJ so that she could take Pina for a ride around the ranch. My grandpa wanted her to have the memory of her first real horse ride at their place! MJ did a great job on Pina! I was just happy that I got in one good ride!

Today we are leaving Hope and headed to Lockhart. We are staying another couple of nights with my other set of grandparents Granny and Paw Paw Brown before we head to Austin for my benefit. On our way out of town we stopped by to see my great grandma Izola. She was so happy to see me! She even held me for a little while. She liked giving me kisses and said she loved how big I was getting and said that I was solid!! I am!! It was great to see her, I even took a wee nap on her bed. We try every year to stop by and say hi!
So far, even with daily seizures. We are all having a great time!
Love Malia


Tuesday, September 17th, 2013

Morgan’s Wonderland Day 9

Tuesday, September 17th, 2013

September 15th 2013

Today is an exciting day for me! I am going to Morgan’s Wonderland, a special needs amusement park! I am so excited! We managed to leave the house by 10:45 am! We are meeting my friend Connor at the entrance. Connor has Lissencephaly like me.. This is his second time at Morgan’s. Connor’s mom Daphni, is a friend of my mom’s. We are excited to see them both. Connor’s sister Tali is coming to the park too! Morgan’s Wonderland was inspired by her dad. He wanted a place that his daughter could fit in and enjoy rides like all the other kids. Everyone can play at Morgan’s! The park is a 25 acres accessible amusement park in San Antonio, Texas, for children and adults with special cognitive and physical needs. It is so beautiful…. Butterflies everywhere!!

The first thing we did was ride the Carousel! My parents and I went into the dragon one! Super cool! Granny was on a horse in the front and Maria Jose on one in the back. Connor can sit so his mommy was with him on his own horse helping him to hold on tight for the ride! After we went around and around and we went for one more ride! This time MJ asked my parents to put me on a horse with her! I rode a horsey with MJ and held on to the pole! It was so much fun!! We are all so happy to be here!! The next ride was called the off road adventure! We went around the park in a cool 4×4 ride…. I sat in the back and my mom and dad were up front! It was fun! After that I went to swing!! Yes swing!! It was soooo much fun!! Buddy, a volunteer at the park, loaded my stroller on to the swing locked me in and my dad pushed me back and forth! It was exhilarating!! I was swinging!! I loved it!!!!!

We then went to the Sensory Room… It Was super neat, but very cold in there!! It was this great big room that was dark and when I was still a butterfly would land on my arm, and there was another wall that rain would come down…. It was so neat!! We then rode a make believe horse in one of the rooms with MJ and my parents.. We were having so much fun fooling around… Granny is loving it too!! It was the neatest place ever!! So many cool things to do!!! After that we went for a ride on a train around the park! The park is so beautiful we rode around the lake. So fun!!! Then we were off to the fishing pond, and for me to hold on to a water gun and shoot water into the lake!! By now, I am getting very sleepy…. It is hot and sunny out and we have been non stop!! I finally crashed and fell asleep. We went to a covered park area and everyone had lunch including me while I was sleeping!! 🙂

What an incredible day we had at the park. Words can’t describe how happy it made me to ride those rides. Now we are headed down to my other grandparent’s house in Hope Texas. I for sure will be sleeping on the ride down!
Love Malia…… xoxo

Lockhart Tx Day 7&8

Tuesday, September 17th, 2013

We made it to Lockhart from Dallas in 3.5 hours. The ride down went great. We had zero traffic and made it to Granny’s house in great time! I am worn out from the trip and slept a lot on Saturday! My family is coming over to see me! We are having a bbq today and I am so looking forward to seeing everyone… I am kind of groggy today and not my normal spunky little self! All this travel wears me out after a while. I am sure I will get my second wind after my afternoon nap! Maria Jose is flying in today from Savannah Georgia. She was visiting her family that she had not seen for many many years!! I can’t wait to see her!!

After I woke up from my nap everyone was there! I went outside with them and we hung around outside and had a nice time catching up! So good to be around family and friends! Uncle Andy showed up too!! He is a sweetie!
Love Malia

La Familia!!

Monday, September 16th, 2013

Dallas Day 4, 5, and 6th

Monday, September 16th, 2013

Uncle George, Grace and Scout were very excited to see me! On my first night there we hung out at George’s house and caught up and laughed a bunch. We were all pretty exhausted from the trip, and an early night to bed was the plan for me! Of course my mom and George stayed up late, as Janet came by later that evening and they had some catching up to do! Dad took me to bed and I fell fast asleep.

The following day, George and Grace went to work and school and my parents and I went shopping. George had rented us a car for the day so that we had time to run around and go shopping! I had a new outfit to buy for my benefit, and mom and dad too! We met George out at Cedar’s for lunch. I had my lunch too and everything went well.. It is nice because now I can actually eat out at places where as before it would take me 5 hours to eat lunch and now it is just one hour! 🙂 My tummy is a little off from all the traveling but all in all I am doing really good. Seizures have been so so. They have been less frequent than before. Everything was on sale at all the stores and we made out like bandits! After shopping we picked up Grace Ann from school! Gotta love end of summer sales!!! Later that evening Katie came over and we had a great time together.

The next day my dad got up early and Janet took him to greyhound bus station so that he could go to Waco. There Auntie T would be waiting for him with the Armarda. She is so sweet!! Each year she loans us her big car so we don’t have to rent one!! Dad was back by 2pm! It was a pretty qtrip for him! Later that day,Nana came to see me, George’s mom. SHe is so sweet and it was so nice to see her again. After our visit we went back to Old Navy to find me a dress. We found two! Still not sure which one I will be wearing. We have time though. We all headed to Mi Cocina, George’s favorite Mexican food place. Janet and Katie came out as well and it was a lot of fun sitting outside for dinner! It was not too hot either! That evening Janet came back to the house with us and her and my mom knocked out a ton of work for my benefit!! They definitely made some head way!!

Tomorrow we head to Lockhart!
Cant wait to see all my family there!
Love Malia oxox

Friday, September 13th, 2013

Dentist trip!

Friday, September 13th, 2013

holding mom’s hand!

Travel Day 3

Friday, September 13th, 2013

September 10th
At 4am the alarm went off. I was in bed with Maria Jose. Mom got up to give me my morning meds and water as feeding me at my normal time is not going to happen today. I began to lip smack early in the morning. This is a type of seizure. It is exactly as it is called lip smacking. I did that in my sleep off and on for a hour. Everyone was hustling and bustling in the room getting everything ready for the mini van coming to pick us up. We left the hotel on schedule at 5:15 am and arrived to airport by 6am. The airport was busy and mom and MJ got my mask out to help keep those nasty germs off of me.

Everyone at the airport was very nice to us. We were checked thru all security and sitting at gate by 6:45 am. We had enough time for me to begin breakfast and mom and MJ started feeding before we boarded the plane. Once on the plane I went straight to sleep. After I woke up I had a small seizure. So far I am doing well with my O2 and am not requiring additional oxygen… Let’s hope it stays this way. It is a beautiful day today. There is plenty of blue sky and pretty clouds out my airplane window. When I woke up mom passed me over to MJ for a visit, and of course she ends up stretching me and working me out!! Got in a 5 minute workout before landing! We are headed to see George and Grace! Can’t wait!
Love Malia

Day 2

Friday, September 13th, 2013

September 9th
Day 2 Journey to Texas
We woke up at the hotel with the sun shining. We always take a day to rest from our journey from home to San Jose. Mom, unfortunately has all three of us lined up to see the dentist, Dr. Simon Mermelstein. You might remember the name, his wife Linda, was my first therapist when I was only 1 month old. Me and Dad were not to keen on the idea of having to go to the dentist on our relax day but then as they say Mom knows best!

I was first in the dentist chair, Simon said that I had really good hygiene and my teeth were looking good. When he stuck the sharp pointy object in my mouth to scrape off the plaque I was not the happiest of campers but I did rather well and only complained a little bit. I have no cavities! After my teeth were cleaned and sparkly white it was my mom’s turn. Dad was in the other room. My mom really does not care too much for the dentist and is always apprehensive. Thankfully I was there to hold her hand! 
After we finished up we headed back to the hotel to finish packing. Maria Jose showed up later that evening. After dinner it was off to bed early as our day will start tomorrow at 4am. I am so excited about our journey.
Love Malia