Malia Moore

The Lissencephaly convention is happening this year. Remember when we had tickets and were planning to come home for my benefit and the convention? Three years later, the Liss Foundation decided to move forward and host the event at the same venue as before….. my favorite place Morgan’ s Wonderland.  My parents are thinking of hosting another benefit for me when we go. At the moment I am not vaccinated. My parents thought it might be best to vaccinate me a few months before the trip instead of now as I hardly ever leave the house and the vaccine does not seem to last for more than 6months. It has been a hard decision for my parents to vaccinate me. Not because they are against the vaccine everyone at our home is vaccinated, more so they are concerned for me and my fight against seizures. Any little thing can trigger them. Obviously if I am going to Texas, I will need to be vaccinated so we will probably just wait and do it sometime in May . 

My mom had to have surgery recently. It was a laparoscopic surgery on her abdomen. She was not allowed to lift me for one month! We still had some good cuddle times together but I know she was missing picking me up! Today she is on a plane to Texas to go see my grandpa, uncles, and cousins. Grandpa Shroyer and Gammy have not been able to travel to Costa Rica so mom felt it important to go and see them, also it is a surprise. My grandpa and uncles over the course of many years have always had a annual sausage making at my grandpas. This is going to be the last year. Since my mom has never been she decided to go and surprise grandpa. She is only gone a week but I know everyone will be happy to see her. I will miss her very much but dad y Cinthya will be taking good care of me while she is gone. 

After four days of not having a seizure, I went and had 4 in a row. They were super strong,  the kind where my eyes roll in the back of my head, my body completely stiffens, and at times I stop breathing all together. The kind that completely wipe me out.  The first two seizures did not last long, maybe 45 seconds. Then the next one went on for a few minutes and when the 4^th one hit me, it just simply would not stop. My parents had to give me Diazapam. That is Valium. I used to take Dormicum which Midazolam it has less side effects and is more efficient in making the seizure stop, but at the moment there is none in the country due to the shipping crisis and also that Midazolam is the preferred drug of choice when entubating patients. So there is a shortage. The Valium finally worked it took 45 minutes for the seizure to stop. Obviously it was not as intense as in the beginning but for me to finally stop moving it took that time. For some reason valium does not make me sleepy and unbelievably I stayed awake the majority of the night. The following day, Sunday, I slept pretty much all day long. I was wiped out from the seizures. Grateful to God that my seizure stopped and at least we have a medicine to make it stop. 

What a great Valentine present, I got to see my Uncle Jack! Dad went in on Sunday to go and get him. He is always so good to me and comes down completely loaded with all my items. It has been almost three years since I have seen him. The last time he was here for my VNS Surgery. It is so nice to see family and friends again. Even though we are still in the pandemic, one cannot stay at home forever either! We had fun with Jack, we went to the beach on Sunday I took a nice long nap, mom tried stand up paddle board with Jack. That was fun to watch.. She fell off a few time, but she got the hang of it pretty quickly!  Jack of course read me some Skippy Jon Jones… We always have a good laugh with Skippy! Come back soon Jack… We loved having you in our home. 

Love Malia 

In reality I can say that 2021 was a good year for me, pandemic and all. I am so grateful that I stayed healthy this year.. Besides the typical ups and down in my seizure world I really am doing well. I have a wonderful therapist who loves me, works out with me, and takes great care of me during the week. We have made many strides this year and I continue to work hard, use my creativity in my arts and crafts. My life is full of love and who could not want anymore than to be unconditionally loved? My parents and family and friends are always so wonderful to me and love me so.

Speaking of family, my grandparents, granny and pa pa brown came to spend Christmas with us. It was so awesome to have family here over Christmas. We had such a nice time, opened gifts on Saturday morning and had dear friend Krystal and new beau Pascal over for dinner that night. Dad made his famous smoked turkey and of course mom had all the sides.

Christmas is special, the birth of our King, and so many reasons to celebrate the day he came to earth. Hope everyone had a wonderful Christmas and New Years.

Love Malia

So GRATEFUL for my family and friends. Grateful for God who looks after me with the guidance of my mom and dad. Grateful that I can do so many things! Grateful for music, birds, my dogs, to smile, to hear, to listen… So grateful for all of you who are part of my life… Grateful for this day to be grateful for all I have.

We had a nice mellow Thanksgiving….

Love Malia

Had a fun time with our Halloween tradition of inviting my BFF’s Genesis and Gabriella to our house for some spooky fun! Little late in getting this out there to you guys but figured better late than never! We had fun and our new friends Kristen and Nadia came over to experience the fun with us! My parents did a great job with decorating with the help of Cinthya! It is always so great to hang out with my friends and to have fun creating art together, some good laughs and great stories. Here are a few pictures from our party!

In this month, I have been battling my seizures frequently. Thankfully I went to San Jose last week and saw the only Doctor in San Jose that knows how to adjust my VNS. Remember the surgery I had to put the pacemaker in to help with my seizures? The doctor who previously had been seeing me retired. The only other doctor I had worked at San Juan de Dios the public hospital. Social medicine is a great thing if you are not in a hurry. My good friend and physical therapist decided that she was going to help me get into see this doctor!

Cinthya’s sister Vivianna, works at the children hospital and did us the big favor of taking over my appointment card for scheduling in person so we would not have to make a special trip into San Jose just for making the appointment. Vivianna is charismatic and she helped us to see the doctor by (squeezing us in) his next available appt was in February. So blessed that we could go see him and he adjusted my VNS a bit higher.

Our trip into San Jose was fast and furious as always, in and out of appointments and mom and dad shopping while Cinthya looks after me. One day while waiting on my mom me and dad and Cinthya went to the park across from the hotel and flew a kite! That was really nice to be outside in the city at a big park flying kites. Dad put the kite string in my hand to let me give a try at flying. My cheeks got a little rosy that day but it was worth it to be having some fun and out of the hotel room! 🙂

Naty and Leo her new beau came over to visit us and we ordered some take out Chinese. It was great to see Naty and I hope she comes to visit us soon. We came back home three days later, things are going pretty good. You would think with the increase of the VNS that I would be better with my seizures but it was the opposite. Once we got home I had to have injections four days in a row to get my seizures to stop. None of us know why… They were incredibly strong it has nothing to due with the VNS device, as remember I used to have 6 to 7 strong seizures a day before the device. Now I usually have one a day and sometimes can go a couple of days without having one but these last few days were brutal and incredibly strong mean seiuzres. Sometimes I do a great job of kicking them to the curb as Aunty Kathy says… but other days they are just to strong and mom and dad have to stop them with injections.

After the weekend passed I began to get my groove back and doing better both seizure and sleep wise. Cinthya is back as she took a few days off and we are back to our routine. Our trip to San Jose was successful we had not been there in six months which is a good thing!

Love Malia xoxo

I may be exaggerating a little bit by saying I have been on adventures! To be honest, with the pandemic still in full force we don’t have as many adventures as we used to! We haven’t been on a trip to Texas for my annual benefit in three years! I do go swimming in our pool, strolls around the property, lay on the couch and take naps, and of course have great workouts with Cinthya who I absolutely love and adore! We have such a great relationship and I am so happy she is in my life!

In the month of September, I celebrated Costa Rica’s Independence Day with my traditional folk lore CR dress. Cinthya did a great job making me look beautiful! I was surprised the shirt Roxanne made for me a few years ago still fit!

On September 8th it was Lissencephaly Awareness Day! Making awareness of Lissencephaly is so important as well as all the other syndromes out there. I continue to fight the seizure monster somedays he wins and somedays he loses. I keep on fighting though!