Archive for September, 2019

Dia de Independencia Costa Rica

Friday, September 27th, 2019

September 15th 2019

Today is Costa Rica’s Independence day! We are always in Texas for my benefit this time of year so I never get to particpate in the activities! This year we did not go back to Texas, because of the increase in seizures and the surgery. We were not sure when we would be called by the hosptial and given a surgery date. I was happy to be able to be part of the day.

Roxy of course set out to make sure I had the coolest “farrol” (lantern) ever ! We made a traditional ox cart, made out of recyled products. It turned out so cute. I even had coffee and beans in my cart! Roxy also made me a beautiful blouse to wear with my skirt that MJ had sent to me. It is the typical folklore that everyone wears on Independence day. Especially the students. The day before Indepence day is when there is a parade where the kids take to the streets with their farroles and sing songs and shout out Bombas! (poems)

My dear friends, Gabriella and Genesis came over to take picutres with me as well as Irene, Luisa, Gabo and Javier! THe kids at the school began the march towards my nursery. THere we were waiting for them and particapted in the parade. We could not start at the school, as the road is not asphalted and there were too many holes in the road for my dad to try and manueveur in my wheelchair at dark! THe road in front of my house is asphalted so we were able to walk a bit of the way with kids! It was fun, and there were many beautiful lanterns. I want to give special thanks to Roxy, for helpikng me with my farrol , making my shirt, and dressing me up so beautifully on Independence Day!

Love Malia!

Post Surgery

Friday, September 27th, 2019

Two weeks after being home and being well taken care of by my parents and Roxy we headed back to San Jose to meet with Dr. Sittenfeld. My wounds are healing nicely. Thankfully the stitches are dissolvable and fall out on their own. We were anxious to get my pacemaker officially turned on! Once in Dr. Sittenfelds office, he took a small hand held device that he holds over my pacemaker. His tablet then activates and he can now read from his phone the battery life, how many times the magnet has been used, and adjust the frequency level. We started with a frequency level of 1.25 the vibration would come on every 5 minutes and would last 30 seconds. This would be my setting for the first month. The appointment did not take long at all he told us that he would like to see us back again in a month. When we arrived to the hotel, I had a gran mal seizure. Mom took out the magnet and swiped it over my wound where the pacemaker is implanted. The seizure stopped instantly. It was pretty amazing to see it work so quickly and detonate the seizure. The magnet is to be used when I am having a seizure. Its purpose is to stop the seizure and if it doesnt stop it, to help diminish the intensity of the seizure.

The first two weeks went really well. And although I am still having seizures, the magnet is helping. The third week the seizures seemed to come back more intensely. We knew it was probably time to go back to see the doctor and have another adjustment on the device. I am to keep adjusting the intensity until we get the right level. It is a gradual process. We have hope and in reality we can see a 25% reduction in seizures and that is a good thing…. Fatih, hope, trust….. We have it all. We believe in the VNS and that I am going to be better because of it… Its what we all have to learn in life and that is PATIENCE. It took a ton of patience to get the device and oorganization of the surgery.. So patience we will continue to have! I feel better and I am more alert. I have actually gone a few days without having a single seizure. On those days, I am so alert, happy, interactive, smiling, and kicking my legs with joy..

I am blessed beyone belief, am grateful for all those who helped me get the device and for the doctors who operated and assisted during surgery. Thanks again for all of you who prayed for me~

Love Malia