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

thoughts….

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

March 26 Epilepsy Awareness Day!

March 26th, 2018

As you know, my seizures have increasingly become worse. They are called partial complex seizures. My arms shoot out in front of my body my eyes roll up and I begin to shake. Thankfully they don’t last too long, 10-15 seconds. I have a nasal spray that I use that helps to make them stop. Sometimes I can have up to three of those in one day.

We have all been wondering why have they become so strong and more frequent? Is it that I am getting older, my brain is growing? The seizure monster used to only come when I was sleeping or right when I was waking up. Now he is coming whenever he feels like it.

We recently went to San Jose where mom had scheduled an appointment with my neurologist to see if he had any suggestions. In all reality I have tried everything out there when it comes to seizure drugs. My parents are against me taking Barbituates as they are highly addictive, and my parents nor myself want me to become a drooling zombie. When I started CW out of Colorado and went six months seizure free it was before it became legal in all 50 states. When it became legal it was because the had to lower the amount of THC so now it is sold a hemp oil and readily available to all. But…. that change maybe the change that messed things up for me. My seizures came back not to the amount as before but they came back. They were manageable but now they are just annoying and very taxing on me. So we began to look at other alternatives which is trying a different strain of Cannabis and using the total plant. Dr. Luna supports medicinal cannabis and agreed with my parents that this would be my best option as we are at my maximum and can not raise my current AED (anti-epileptic drug).

On Epilepsy Awareness Day we are going to be making a change and trying a stronger strain of Cannabis. I’ll take a three day break of oil (reboot to the Endocannabinoid system) and then start my new oil on Wednesday. Praying that it works and takes the seizure monster or at least mimnimzes them! Every child should have the right to try cannabis. Legalize it! Cannabis is Medicine!

Love Malia

February

February 28th, 2018

February 28th World Rare Disease Day!

A day to bring awareness about rare diseases… Did you know that there are more than 7000 rare disease types and that 80% are caused by faulty genes? My Lissencephaly/Miller Dieker Syndrome was caused by a de novo mutation not by faulty genes from my parents. My chance to have another brother or sister with Liss/MDS would have been one in a million. My parents tried to give me another brother or sister but they were unsuccessful the second time around! They told me I was conceived in three months once they started trying but they’ve been trying for years now with no luck. They get to spend all their time and attention on me! :)

It is important to keep reminding and bringing awareness about Rare Disease Day! Educate and Investigate. Thanks for all my supporters out there rooting for me.
Love Malia

My friend, Maddie Bermingham

February 25th, 2018

Maddie Bermingham was my kindred spirit… Born into the world of Lissencephaly/Miller Dieker Syndrome we were connected from the start. We never had the opportunity to meet in person but my mom would show me pictures of her, we actually favored one another! Maddie was a tough girl like me! You can’t be a Miller Dieker kid without being tough. One battle after another we have to conquer…. whether it be hospitalizations from being ill, surgeries, seizure fighting, oh the list goes on and on…Maddie fought very hard for 6.5 years. It broke my heart when I heard the news of Maddie losing her battle to a seizure. It is just so unfair. I am sorry I never got to meet you. I know your mom and dad and brothers are missing you so much. Even though you are in a much better place than we are down here you are missed and thought of daily. I see you running,jumping,singing and dancing… I am sure the angels are amazingly beautiful in person. Fly high Maddie loo….. We sure do miss you.
Love Malia

New Years!

January 22nd, 2018

The year flew by me! So much has happened in one year. I thankfully have managed to stay away from doctors minus my normal check ups.. I did have another bout of SIBO but it seems like we have managed to get it under control. I gave up my real food for a type of formula that is easy on my stomach but packed with loads of nutrients and minerals and no sugars. I can’t do sugars such as fruits nor carbohydrates as they convert into sugars… The naturopath in Colarado suggested that I stay away from it all. I am okay with it. I am maintaining my weight and even putting a few pounds on.. My mom was sad to stop giving me my regular foods as she has always loved to cook for me. I had to convince it was going to be okay and the best thing for me is for never to have SIBO return as it is one of my biggest enemies.

New Years Eve we hung low and had my grandparents and neighbors over for dinner. We even managed to hula hoop a bit! Dad was having fun putting the hoop over my chair and spinning it around. :) Granny even tried to hula hoop! But Susan our neighbor was the best! Boy could she move that hoop!

I was asleep before midnight so didnt make it to the new year…. I am hoping 2018 is full of health for me and seizure free. Big wish there but a girl can sure dream. So grateful for another year.. Time sure does move fast. Wishing all my family and friends out there the best 2018 has to offer.
Love to all
Malia