Archive for April, 2018

Malia’s Mazzeratti!

Monday, April 30th, 2018


Monday, April 30th, 2018

My new wheels!

Monday, April 30th, 2018

Since December my mom has been trying to organize getting me a new set of wheels. The chair I have used for 8 years I have outgrown. We ordered my chair through a orthopedic company in San Jose. The name of my chair is a quickie zipie and as my mom said it should have a cd player and keys for the price! 😉 We made the decision to buy locally simply for the support if needing replacement parts and adjusting fitting me!

We left for San Jose for a slew of Dr. Appts,on Sunday and my wheel chair fitting was scheduled for Wednesday. We had planned to leave on Monday but there was a strike going on in the port town where our ferry lands and most all the major roads were going to be closed due to the strike! It turned out better going in on Sunday as we stayed with our dear friend Krystal and she made a yummy meal and welcomed us into her home as she always does. Monday I had my bi annual neuro appointment with Dr. Luna. It was a good appointment. My increase in seizures has much to do with my brain changing and growing and in all honestly I have tried every seizure med out there so we are sticking with our faith that my new oil is going to help and reduce my seizures!

Tuesday was a chill day for me and Roxy at the hotel while mom and dad ran around town and did errands. Roxy and I were sitting by the pool having lunch when up walked the sweetest ten year old ever. She was so curious about me. She must have asked Roxana 20 questions. Since we were having lunch she asked about my g-tube and about how I was fed, she also saw Roxy aspirate me to help me get my phlegm out and just kept asking… Her questions were innocent. Her smile was huge. The next thing you know she asked Roxy if I like movies and Roxy said yes. Sofia, (that was her name) went off to get her iPad out of the hotel home and held it for so that I could watch Peppa the pig! Her curiosity about me was what was so charming about her. She asked because she wanted to know and then with each question answered she would smile and ask if she could help Roxy in any way.. She got permission to help push me around the pool area with Roxy’s care and we had a most splendid afternoon together. She later came by the hotel room with her sister as she wanted her to meet me. For the next few days at the hotel Sofia was always stopping by and checking in on me. I am glad we made friends. I wish all kids would be more like Sofia. It made my heart happy inside.

Wednesday we left to get my new wheels… It was quite the adventure and I was very sleepy that day.. What we thought would take an hour turned into three house… They had to sit me in the chair this was and that, adjust and readjust… It was exhausting for us all… but I have a new chair. You would think I would be happy to sitting in this new chair but it was all too new for me. In my other chair I had much more freedom. I could throw my legs out, and could scoot down in my seat. This chair demands that I sit better… I do sit much better but it is not necessarily the most comfortable thing! It will take me a while to get accustomed to it.

We had one more stop…. I had to renew my passport. We had to go and get my passport picture taken and I also had a 4pm DR. Appt with Dra. Castro.. We went to the mall and found a place to get my pictures done… While on the way inside the mall a seizure decided to sneak up and attack me. It was hard and fast and lasted about 20 long hard seconds.. By the time we got to the passport photo place I was wiped out and totally asleep. We went in and now were on a time constraint as I had my 4pm appt. We went into the back room and mom asked the photographer to give us a second.. There was no waking me. Clapping, singing, moving, me nada would wake me up. Mom picked me up out of the chair and set me on her lap while the photographer came back and tried and tried to help get me to open my eyes.. Finally…. I opened them which was short of a miracle and the photographer got the one shot he needed for my passport! Whew,… we did it…. We left straight from there to see Dr. Castro.

Dra. Castro was pleased to see me so big and strong and doing well. I slept throughout the appt but I could hear her bragging on me! I have been battling respiratory issues these last few months due to allergies and all the dust from not having any rain out where we live.. Dra. Castro did not seem to be too worried as she listened to my lungs. We had our check up and off we went back to the hotel in rush hour traffic!

Thursday morning was our last appointment of the week. I had my US embassy appt at 9 am… Mom and dad got me out of bed in my pajamas and out the door and outside of the embassy by 8:45… I was very sleepy…. We managed to get in through security with all my bags! I was taking oxygen at the time, had my aspirate machine, diaper bag, and mom’s purse. Security at the door looked at us like we were crazy to be thinking about coming in with all those bags but once explained they let us in. We were able to go before the other people waiting in the big line and although it was relatively fast it seemed like it took an eternity to get out there.. Mom was talking to Conular officer and dad was sucking phlegm out of me every five seconds as I was coughing up a ton. One little girl would not stop staring and staring at me and dad finally told her to stop staring or ask a question! I mean geez! It is rude to stare! Finally we got out of there headed back to the van and were back at the hotel by 11AM… Whew,, what an incredibly long day…. Tomorrow we get to go home…. Hopefully it will be smooth sailing. Our journeys into San Jose are never dull….
Love Malia


Monday, April 30th, 2018

I was invited to Coco’s birthday party down at the beach. I only see Coco every once in a while as she does not live here full time. We have hung out on a few occasions such as my easter egg parties. Mom, Roxy and I headed down to the party and I fell asleep in the car it was 4:30 pm and I hadn’t napped all day.. Mom and Roxy had to wake me up and I really was not in the party mood once awake but off we went anyway…

It was great to see Karen, she adores me always has and she is always the nicest hostess! All the kids were splashing in the pool when arrived so we said hi to the few faces we knew and those we did not know too! We sat around the big table and caught up with Hilary and Ryan. Shortly later it was time for presents, I had bought Coco a rain stick and made her one of my famous homemade birthday cards! We went up to give her my gifts as everyone had got out of the pool and were signing happy birthday to Coco. It was at that time the other little girls “saw” me too. It was a tad awkward for a moment as staring always makes one feel uncomfortable. One girl asked me why I didnt move my eyes and the next girl asked why I was sitting in this chair and not up and walking. I heard my mom say that I was special, and she also explained that I had just woke up from my nap and was not in the mood to be social! She asked the little girl if she ever had days like that and she said yes. Coco liked her rain stick and she remembered me from the times before. Even though questions were asked and looks were made I did not mind. The word special means so many things, some parents and kids don’t understand but I hope my presence makes them more aware.
Love Malia