Archive for April, 2013

finished product!

Sunday, April 28th, 2013

These smell incredible baking!

little bun

Sunday, April 28th, 2013

this is fun!

Grandma and Me

Sunday, April 28th, 2013

awwww grandma


Sunday, April 28th, 2013

March 18th, 2013
It has been so great to have my grandma Marg here during my surgery. Since we live so far away from everyone it was really nice to have family here mainly for mom and dad as they were nervous about my surgery! I knew I was going to ace it!! 🙂 Grandma Marg is here for a month and we stayed a week at the hospital so we are getting ready to enjoy some fun time together. One of our traditions is to make buns together. She always lets me make my own little bun and I am a good little helper too! This year we will be spending Easter together. She has brought me an Easter egg kit too so that I can decorate eggs! Right now it is so hot here. We have not had any rain since December and everything is dry and hot! Grandma is a tough cookie though and hanging in there with the heat!

Before we left for home grandma went with my mom and dad to the mall and bought me a nice big bean bag chair! I have a friend named Annabelle who has her own bean bag chair and she always looks so comfortable in it! I wanted one too and now I can finally have one because I don’t have to stay sitting up all the time after eating. I like my stingray wheel chair but it gets old sitting in it all the time so THANK YOU GRANDMA for getting me this super comfy bean bag chair!! I absolutely love it! I like the name of the bean bag chair in Spanish they call it a POOF! Funny name, but I like the way it sounds!

Grandma I just want to say thanks for cooking with me, reading to me, tickling me, feeding me, and spoiling me rotten. Thanks for all the help you have given to me and my mom and dad. We love you.
Love Malia

Feeling better!

Sunday, April 28th, 2013

Getting closer to going home!

Bearing weigh on my hands!

Sunday, April 28th, 2013

They always have me working!

Me and dad

Sunday, April 28th, 2013

In hospital bed together!

Home sweet home!

Sunday, April 28th, 2013

March 12,2013

We stayed one more day at the hospital as Dra. Castro wanted the Pulmonologist to see me before I left. He showed up at my room at 6am. He looked at all my x-rays and told my mom that over all my lungs looked pretty good for all the times I had been aspirating my food into them. He said there were some scars and that my lung volume was low but that with time they would begin to recuperate slowly but surely. The lungs are the hardest to cure. They take time. He told my mom to use a special salt water to nebulize me with so that it would make me cough stronger and that to expect at least 15 to 22 days of me still having lots of phlegm and having to have respiratory therapy daily. We were all okay with that, we just wanted to go home.

We took the 5pm ferry and arrived home at 7:30pm. The dogs were of course so happy to see us, Bismark had been staying at the new house because my dad had moved all of our things in before he came to the hospital for my surgery. The outside door were just beginning to be put on, and as a matter of fact the next morning at 7am they guys were there to finish installing the doors. The back doors had yet to be installed and grandma was not so keen on the idea of sleeping in the house without doors on but Selva and Indio were there to protect us dad reassured her of that! The doors and fans were finished being installed over the course of two days and we are finally beginning to feel like we are living in our new home.

The doctors orders were light physical therapy stretching etc…. but I had to wait to go horse back riding and swimming for a month. 🙁 Amazingly I managed to kick the O2 in a 4 days and little by little we were doing less aspirating and nebulizing treatments. I already feel like I have put on a few pounds!! Ha! 🙂 I am getting bigger though because I can finally eat without it all coming back up. MariaJo is doing a great job with me. Mom and dad sent her to Horse therapy so that she could get certified and we could start riding together. They say it is a fantastic therapy for kids like me! I cant wait to try!

Things are really good right now, my seizures are still lurking around daily but all in all I really cant complain. I feel very blessed and am so happy to be healthy and home.
Love Malia

Post op!

Tuesday, April 23rd, 2013

March 7th, 2013
I was able to go up to my room after spending the night in ICU. Mom and I spent the night together and dad and grandma stayed at the hotel. Grandma had just flown in from Vancouver and arrived very late so I will have to wait to see her. I was so excited to see my grandma the following morning. She had brought me some books to read and my new all time favourite Skippy Jon Jones doll! We had to begin to give me food very slowly to see how my body adapted to the surgery. So far everything is going smoothly. I am in a bit of pain but nothing too bad. My throat is sore from the tube and the doctor said my esophagus is swollen from the surgery but that is normal and I should be feeling better soon. I am still on 1L of oxygen and still having respiratory problems and having to have breathing treatments and aspirations.

My parents are having a hard time grasping how what once took me 4 hours to eat 8 ounces of food is now only taking me an hour and eventually it will even be quicker than that. Each day we go a little faster and a little more food and I seem to be handling it well. The doctors are very pleased with me, and hopefully now that I am not aspirating my food my lungs will have a chance to clear up and get better and stronger!

On March 11th we headed home. We managed to get all three of us in the car. Maria Jo was taking the bus as with all my equipment and grandma there was no room for her. We are all so happy to be going home, and the most special of it all is that we will be going home to my new home. My first night in our house! We all can’t wait. If it was not for grandma we would not have had the opportunity to build the house so thanks GRANDMA!!! We love you!!!
Malia xoxo

Headed to OR

Monday, April 1st, 2013

I am ready!