Archive for November, 2013

October

Monday, November 25th, 2013

Halloween!

Monday, November 25th, 2013

October 31st 2013
On Halloween we were in San Jose.Tio had left that morning very early! I had an eye doctor’s appointment at Cima at 5pm. We also had brought a new gtube to change in my tummy. My parents always like to do change it in San Jose in case of a hiccup! It is a good thing we did as for some reason the water would not come out of my release valve and mom and dad could not pull the old gtube out and put the new in. Thankfully two doctors answered my mom’s text messages and said they would help us out but we would have to wait to do the gtube switch!

Maria came to the hotel to hang out with me while mom and dad did some running around. Maria Jose, had decided that I needed to have a Halloween outfit! She came to the hotel with a red dress. The same red dress she wore when she was three years old! Mom said I looked like a drum major so that is what I was on Halloween. The dress she brought was so well kept that it still looked brand new! We had fun playing dress up together!! :)

On our way to the eye Dr’s appointment their office called ten minutes before we pulled into the hospital parking lot for our appointment only to tell us that the doctor had not yet arrived.. This was our 4th attempt to see her and we were not happy that we were not going to be seen today. We turned around and headed back to the hotel only to find ourselves sitting in traffic for an hour due to a three car pile up! :( The secretary offered to change our appointment to the next day.. Thankfully we were still going to be in town, but none of us were happy about having to sit in rush hour traffic.. We were not sure if we were ever going to see the doctor!

We got back to the hotel 1.5 hour later, it should have taken us 10 minutes! Oh well!! Patience is a virtue right? ;) I was exhausted and went to bed after dinner.. Tomorrow we head to see Dr. Navarro at 9am to change out my gtube and hopefully to finally see the Eye doctor in the afternoon. It has only taken me taken me over a year to see her! Tomorrow is a busy day but I know it will be a success!
Love Malia xo

Tio Carlitos!

Thursday, November 21st, 2013

October 26th 2013
My Tio Carl came to visit us! He won a three night stay at our dear friend’s Piti and Miguel’s place. Kalapiti is a luxurious jungle villa just 5 mintues down the road from us! I even got to spend the night there in one of the suites above Tio Carl. It was awesome. Miguel and Piti were so sweet to let us stay there too! We had much fun hanging by the pool! Carl always gets great vacation trips at my silent auction. One year he won a trip to Portugal and stayed with our good friend Johnny Rocha’s house! My benefit gives him a good excuse to explore around the world! :)

One day we all went down to Playa Los Cedros and brought the dogs and grilled hot dogs and we would had such a wonderful day. The weather could not have been more perfect. We all had a lovely time! Carl’s visit went quick and before you knew it we were all headed to San Jose together. I had an eye’s doctor appointment and another neurology appointment. So we took Tio in with us so he could catch his plane out the next day. He accompanied me to my neuro’s appointment! He got to experience a small slice of my life! After the appointment we went to the hotel to unload all of my things. We were all pretty tired! Tio had an early plane to catch the next morning so we said our goodbye’s and went to bed early. Thanks for coming to see me Tio…. Hope you come back soon!
Love Malia

Flying high………

Sunday, November 17th, 2013

Remembering Parker

Remembering Parker

Sunday, November 17th, 2013

October 20th,2013

After mom’s and I road trip we had a very nice weekend at home and on Sunday we loaded up the dogs and went to the beach to relax a little. It was a gorgeous day without a cloud in the sky. We wanted to test out my new beach stroller and we wanted to let loose yellow ballons up in the sky for my angel friend Parker. You see Parker passed away a year ago today. She had Lissencephaly, Microcephaly and Cortical Vision Impairment. She was only 2.5 year’s old when she passed.

I never met Parker personally but Parker has already helped me. Her mom Megan, gave me the Kangaroo joey pump that fits my new back pack that Annabelle’s mom gave me. You see before we could never come down to the beach and have lunch as I was always attached to a big tall feeding pole. Thanks Parker I am enjoying my lunch at the beach today thanks to you!!Parker’s mom was brave enough to send me Parker’s machine and now I can go anywhere to have lunch or dinner. I have a whole new freedom! Parker’s mom came to my benefit this year. She was really sweet and I was so happy she came to meet me.

Megan has a really cool non profit organization called The Parker Lee Project. She helps all kinds of families with special needs by getting them medical supplies. She has already helped me out more than once. Check out her website http://www.theparkerleeproject.org/ It is a wonderful thing she is doing for so many!!

Parker we know you are watching over us down here, keep flying high. We will always remember you.
Love Malia

Road trip with mom!

Sunday, November 17th, 2013

on the ferry headed home!

San Jose trip

Sunday, November 17th, 2013

October 16th, 2013
After getting over my cold, it was time for me to go in to see Dr. Luna my neurologist and to get some blood work done to make sure everything was in order! I am having terrible seizures.. They some times last up to 45 minutes I hate the way they make me feel. I am taking the maximum dosis on them. It is so frustrating because they really wear me down and make me very sleepy. Sometimes I don’t work out with Maria Jose so great after having one. I have been having 4 to 5 a day. So hopefully Dr. Luna will tell us something new, but it is pretty doubtful.

My mom has been very busy trying to find me Charlotte’s web. It is a strain of Cannabis that has helped many kids like me. They named the plant Charlotte’s web because it helped Charlotte to stop having seizures. I should not complain about my four or five a day, Charlotte was having 300 a week. I know mom won’t give up until she finds me some. We are hoping that this might be what helps control those nasty seizures.

Dad stayed behind as he had work to do so mom, MJ and me went in solo. We had a very good trip and everything went smoothly. I was able to get my blood drawn from Jonathan. We pulled up to Cima right before he left his shift and we ran in drew my blood and then off we were to the hotel to unload the luggage and then to see Dr. Luna. Meanwhile MJ was feeding me lunch in the backseat! It was a very packed day but everything went great which as you all know sometimes this never happens! We were very happy! :)

The appointment with Dr. Luna went ok. We are not going to change any of my drugs. We are hoping that the seizures subside. It is the full moon and everyone has been talking about how strong the moon is and how much they feel the energy from it. We are all thinking the moon maybe causing my increase in seizures.. We will let you know if something changes after the full moon starts going down.

The next day MJ came to the hotel and mom left to go do some shopping. We decided that since we were able to get all my appointments over with in one day that mom and I were going to go ahead and head home. MJ is staying behind in San Jose as the weekend starts for her tomorrow. When mom came back from shopping MJ was giving me respiratory therapy. After that I fell asleep and Maria began to feed me. Mom got the car all packed up and we headed out the door to catch the 4pm ferry. I never coughed during RT so when I woke up all of that phlegm was just moving around and making me want to cough. This was Mom and I’s first road trip ever alone. Mom was a bit anxious about making the ferry and since I started to cough once we got in the car we decided it was better that I go on oxygen.

Not five minutes after being in the car I began to cough so much that mom was using the bulb syringe (the pear) to pull out phlegm while we were at red lights. I was at the time only on 1L of 02. Then we are now out of San Jose when I began to cough harder but I also had so much in me that it was hard to keep up with coughing. Now my mom is getting really nervous, and decides to check my O2 levels. She slips the monitor on my finger and it is reading 82 she bumped up the 02 to 3L and I still was only going up to 85. Now my mom is really panicking inside and wondering what in the world to do? Should we go back to SJO? Well mom decided it was time to pull over. We had to find a safe spot to pull over because it is very dangerous to pull over off the freeway in San Jose. We took an exit we knew really well and mom pulled over and began to do compressions on my chest to try and get me to cough. Each time she did a little phlegm would come out and she would take it out with the bulb syringe. For 25 minutes we did this and finally I got most of the phelgms out and we were able to start back on our journey.

We made it to the ferry with 5 minutes to spare! Whew,, that was a close one. Meantime on the way to the ferry I had cough several strong coughs. By the time we got on the ferry mom was able to take me off of O2 and I was doing fine on my own. Poor mom, she was a bit worried about me during our road trip. I was just testing her to see how she would handle some pressure on the road. You know what??? She did a great job. We made it back home safe and sound…. Mom did tell me she sure did miss having dad around… You know they say absence makes the heart grow founder! I am ready for the next trip! :)
Love Malia

Feeling better!

Saturday, November 16th, 2013

getting my groove back!

under the weather!

Saturday, November 16th, 2013

The boys!

Saturday, November 16th, 2013

Curtis, Grego,Nate and dad!