Archive for June, 2018

10 YEARS OLD

Saturday, June 30th, 2018

I made it to ten years old. TEN YEARS!! Woohoo! I am now in the double digits! Unbelivable after all I have just gone through and I am still managing to show up and have fun at my party! Whew, what a week…. I did not stop seizing until Tuesday. 4 days of on and off stop seizures that would not let me sleep or rest peacefully. BUT…… I STOPPED! I was good to go by Wednesday! And mom and dad decided how could we cancel the best party of the year celebrating my TEN YEARS!!!

All my friends came! My Uncle Jesse and Aunt Debbie were present as my family and of course Aunt Kathy! She never misses my birthday! We had a great time. Lots of preparations and planning for my big event. The theme this year was FLOWER POWER! Super easy as my home is surrounded by flowers… and POWER IS WHAT I HAVE!

It was a peace and love kinda day… Lots of food, good times, laughing and great costumes! I was of course the cutest of all! We had pin the tail on the hippie girl, water balloons which I was able with help to throw a few!! Cake, music, song and fun… The best part was I enjoyed it all… Smiles were flowing from me and I know that is the best thing I can give to anyone is my smiles….

Another year down, praying to the Lord above and all his Angels that surround me that I will have another great year…. Thanks for all who came and for all the good wishes I received on line! Until my next big birthday bash..
Mucho Amor
Malia

Uncle Jesse

Saturday, June 30th, 2018

There is a special kind of love between me and my Uncle Jesse. Not sure how to describe it but the best way would be to say we just connect. He has always been pushing me since when I was a baby! His favorite thing that he likes to do is give me 4 not 3, not 2 nor 6 but 4 kisses on my forehead. He started that a long time ago and I love it. It was so great having him and Debbie here. He is a great book reader! He read to me many times one of my all time favorites Skippy Jon Jones… You know that crazy Siamese cat who thinks he is a Chihuahua! You have to read it with a spanish accent! He did a great job singing and using his best spanish accent! :) I love him so much. He believes in me 100%. I was sad to him go but we will get to see them soon in September for my party.

Love
Malia

Emergency Flight SAN JOSE

Saturday, June 30th, 2018

June 8th 2018

Thursday night at around midnight I began to have spasms. ( seizures) My arms and legs would stiffen. My mom who was sleeping next to me got up and got my CBD oil to put under my tongue to get the seizure to stop. This time it didnt work. The seizures weren’t as intense as the ones I have been having but any seizure is a bad seizure and must stop. By 2:30am mom had tried giving the rescue drug Diazepam (valium) rectally. Still nothing I kept having these spasms. She wrote both Dra. Castro my pediatrician and Dr. Luna. We have another type of drug Midazolam, to use for stopping seizures and mom was nervous about trying it, but she and my dad felt like we had to give it a shot. The problem with these drugs is that they can make you go into respiratory distress and that is a very scary thing. Mom tried the second drug and my seizure finally stopped. It had been going on for 6 hours and I slept four hours without waking up. But by 8:30 am I was at it again. Once again we tried the drug Midozalam as that helped last night. Nothing. It did not work. Next thing you know mom is packing. She has spoken to both doctors and everyone is concerned for me and that we need to get this seizure to stop. The next step was a phone call to the airlines. My mom organized a private 4 seater single engine Cessna plane to come pick us up in Tambor. (a thirty minute drive away) Mom called Roxy and said get your bag together we are making a quick trip to San Jose. We quickly packed up the house, and dad drove us to Tambor to catch the plane.

A Cessna is pretty tiny.Dad was outside of the plane trying to break down my wheelchair so that it could fit inside. At that given time I went from spasms into a gran mal were my eyes roll back into my head and all you can see is white and my body starts jerking. Mom told dad to forget the wheelchair and yelled at the pilot to get moving.. Thankfully my gran mal did not last too long a matter of 20 seconds which can seem like a lifetime for someone having to watch me go through it.
Dad told us bye, the pilot cranked up the plane and off we went to San Jose. Mom had told the pilot to have an ambulance waiting for me at airport. I continued with the spasms. Once arriving the airport the ambulance was there waiting for me. Mom had to negotiate a deal as the driver wanted to charge us $400 and mom was like no way the hospital is 20 minutes away. Mom is good at negotiating she got him down to $200! We flew to the hospital; the driver was driving a bit fast! Once we got to CIMA, I was taken into the emergency room right away. Since I was technically not in status meaning I was able to regain consciousness between each one, I was able to stay in the outpatient emergency room and not admitted to ICU. Thank goodness…

Dr. Zuniga came in (he is a favorite of ours) and mom explained what was going on. I was administered 2mg of Dormicum via an IV. Since I had not really slept at all in the last 24 hours the IV worked fast and I was able to stop seizing and go to sleep. During the time I was asleep they took my blood, and I was catheterized for a urine test to make sure I did not have any urinary infection and to make sure nothing else was going on with me! Sometimes any kind of infection can trigger seizures but mom knew deep down that it was probably more than likely the Atropine. It was the only different thing we had done.

About 45 minutes later I woke up and we went and took a X-ray of my lungs to make sure they were clear. Everything kept coming up clear and me in good health. Sure enough not soon after I woke up the spasms started again. They gave me another dose of the dormicum but this time I did not fall asleep or stop with the seizure. Sometimes I would go 5 minutes without having one then other moments they would be less than a minute apart. Every time a nurse, doctor, cleaning person, lab tech that walked by and saw me they all stopped and said LOOK ITS MALIA!! It has been years since I have had to go emergency. Some were shocked to see me everyone was so happy that I had been doing well.

My daddy showed up at 7:30pm, he took the ferry and brought in my wheel chair and our van for me to get around. It was so good to see him. Roxy was finally able to go to her friends house and get some rest. We stayed at CIMA emergency until 12:30am. The doctors said since I was not in Status nor had any other kind of infection or illness that I could go home. Dra. Castro said it was much better than staying overnight in the hospital and possibly picking up something bad from there. Even though I had not stop seizing with these spasms at least I was not being admitted. My parents weren’t happy that the seizing had not stopped but what else was there to do?

We went to a hotel close by the hospital so in case we need to move quickly we would at least not have to go far. We were all exhausted. Dr. Zuniga had told my mom how often she could give me the sedative to try and see if it would stop and when we got to hotel mom gave me another dose and I fell asleep from 1am to 6am. Mom and dad were so relieved that I was able to sleep!!! We pretty much thought we had nipped it in the bud, but unfortunately about an hour after me being up the seizure started again.

It was now Saturday and my Uncle Jesse and Aunt Debbie were flying in Sunday afternoon… I hadn’t stopped but then what else was there to do? I spent Saturday with Roxy for a bit as my mom and dad had shopping to do for my birthday party… My parents just believed that surely it was going to stop… Don’t think they did not try everything. Even tried cannabis oil rectally but nothing really was working. They seemed to be getting farther apart and then again not. It was never ending. After speaking with the doctor again we made the decision we would go home. The only thing we could do was wait until the Atropine was totally out of my system and see if they stopped. I was happy to be going to get my uncle jess and aunt debbie.

The following day we packed up thankfully for the van we can fit us all. We headed to the airport, my Tio and Tia were on time and outside waiting for us. Was great to see them both. We headed out for the ferry and although I continued to spasm I was calm and enjoying the ride home.

It was not until Tuesday when the seizures finally stopped. Thank you Lord.. I know You had a hand in this and I heard mom and dad praying every night. It was most definitely the Atropine. Sadly enough it really did help me with my excessive phlegm I am so sensitive to medications. In the side effects it did not even say that seizures were a possibility but the neurologist said with kids like me anything is possible!

I am grateful I am home and doing better and can celebrate my birthday with my family and friends.
Love Malia

Atropine

Saturday, June 30th, 2018

Once we got home and I got situated back into my routine mom decided to give the Atropine a shot. It is 1 drop under my tongue. In 30 minutes my excess secretions, (saliva) was dried up. Before you knew it, I wasn’t coughing as much and Roxy wasn’t having to aspirate (suction) me every minute. It seems to be working! Mom would give me two drops a day one in the morning and one at night before bed. As the week went onto I was happier and more attentive. The stress of having phlegm all the time and having to be suctioned only makes matter worse for me so the less phlegm the better. All the searching and investigating on how to get me the Atropine seems to have paid off.
Love Malia