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