July Flew By in a Blink!

July 31st, 2018

10 YEARS OLD

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

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

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

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

San Jose!

May 31st, 2018

Time to head to San Jose! Have not had to go back since picking up my new wheels in March! I have a slew of doctor’s appointments and I need to get my wheelchair readjusted. I have an ingrown toe nail that I have to have looked at, then mom has decided that I need to see the pulmonologist. I have been having terrible sneezing attacks and lots of excess secretions that I am having a hard time managing. I am staying on oxygen more frequently than not, and my parents and Roxy are having to suction me every minute of the day as all I do is cough.

My mom reached out to her Lissencephaly support group, and many moms suggested different things that help dry the secretions. Mom was very excited to try one of them and called the pharmacy to find out which one would be available here. It was disappointing to find out that NONE of them were available here. How could that be? Well it was true, it turns out one of the drugs Atropine was available here but it was mixed with Phenobarbital but we can’t use Phenobarbital with me. Can you believe that Atropine is the same medicine they use in dogs as they do in humans! Atropine drops are used during eye examinations to open and dilate the pupil. If a drop of Atropine is put under the tongue it stops excessive saliva. It also does not affect the entire system. It is a non systemic drug which we like to use as it gives a break to the rest of my organs.

Once mom found out it was the same drug in animals she began calling the vets. The veterinarians use it in dogs before surgery so they don’t salivate during surgery. She then went online to Pets RX and found it but once she went to check out it said it needed a prescription from a vet. So then she started calling everyone she knew with a dog in the States.. We thought for sure some family member or friend of ours would have a good connection with a vet and get us the drops to try! No such luck! Every corner we turned we were told no! It’s been three months since I have been suffering with these excess secretions. I should feel pretty lucky as most Liss/MDS kids like me suffer with these secretions since infant age. This only started happening to me in January. Since we had no luck finding it in the USA nor here mom decided maybe the pulmonologist would have an answer to the this recent problem.

The last time we saw the Pulmonologist was when I was in ICU at Children’s hospital and 2 years old! Remember when I nearly lost my life in intensive care with double pneumonia? I have to say I thoroughly enjoyed seeing the complete look of shock on the doctor’s face when I came rolling into his office! He kept saying he was in shock, that he absolutely could not believe that I was here! Yes here I am alive and well! He asked what had we had been doing for 8 years??? Mom said enjoying life! We discussed the drugs and he confirmed that we could not get here and than began talking to us about lung disease, and prophylactic antibiotics… And mom was like what??? Antibiotics for what, I am not sick! He suggested as a preventive for me for the inevitable fact that I will get a lung disease… No thank you, said mom, not interested. Mom asked him if he knew of SIBO and what antibiotics had done to my stomach. He had not heard of SIBO, and mom said well you don’t want to see Malia like that! He was very nice and very impressed with me it was just that he was so very surprised to see me doing so well minus these secretions! He told us to let him think about it a day and to our complete disbelief he called the next day to say that we could have Atropine made at a compound pharmacy here in San Jose! Woo Hoo!! How exciting I get to try it and see if it works for me! Thanks to Monica Albaugh she has a little boy that uses the Atropine and was the one who told my mom to try it! The next thing we had to do was get the prescription and send to the pharmacy for them to make it! It is a sterile drug since it goes into the eyes so it took a bit more time to make it than normal. We had to stay an extra night!

We picked up Kathy on the 31st, and headed home on Friday after picking the med up Thursday night! We left that morning rushing out the hotel we had to be on the road at 9am and left at 9:15 we made it to the Ferry with two minutes to spare! Whew….. talk about a bit stressful but we made it and got on! Happy to be home, as always trip always wears me out but at least I am sleeping in my own bed now. Will let you know how the atropine works next time!
Love
Malia xo

Family Visits!

May 31st, 2018

Definitely enjoyed my time with my Uncle Carl and Cousin Cline! They both came down in May to visit us! I have many friends and family visiting this year! Kathy is coming at the end of May and my Uncle Jesse and Aunt Debbie will be down here next week! My birthday is coming up and I will be TEN YEARS OLD! Can’t believe ten years have already gone by! I am a big girl now! Looking forward to celebrating my day with everyone!
Love Malia

Malia’s Mazzeratti!

April 30th, 2018

Sofia

April 30th, 2018

My new wheels!

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