Archive for July, 2019

Ella and Me

Wednesday, July 24th, 2019

It was so great to have Ella here visiting us. I adore her and cherish her friendship. She is like a sister to me! I sure do love her mom and dad too… We wish they could come more often to see us as we always have fun!
xo Malia


Wednesday, July 24th, 2019

July has almost come and gone. Many things have gone on this month. Roxy of course came back to work for our family and wil be staying until the end of the year. Thank goondess. We all love our Roxy. The VNS device has been in Costa Rica since June 19th and I have yet to get a date for my surgery. We are all having to be very patient. The VNS device was donated it is very very expensive. As I had mentioned before in my blog posts, in order for the company to donate the device the doctors and the hospital had to donate their services as well.. This accomplishment TOOK FOREVER and now that the device is here it is taking forever for the doctors to agree upon a date to operate me. Three doctors will have to be in the operating room. The neuro surgeon, the doctor whol calibrates the device, and the anthesiologist. We thought for sure that the surgery would happen this month but it is not going to happen now until maybe mid August. We just have to patient. It is hard to be patient though, as two weeks ago I had a gran mal seizure that took would not stop. My dad and Roxy were home with me when it started mom was at work. Dad called mom and said to come home. When she got home she dad and Roxy had already administered two bottles of Dormicum rectally. They are only allowed to give me three. Mom administered the third one. Still no change. My seizure had not calmed down at all. Mom called the neuro and he suggested she give me a intramuscular injection and use anohther half of a bottle of dormicum.

Roxy being a nurse knows how to give shots. The entire time this was going on Roxy was very calm and in control. Roxy gave me the shot and within seconds the seizure stopped. Everyone cried when it stopped. I was exhausted the seizure had lasted just over an hour. Dr. Luna told mom it was time for her to learn how to give shots to me. Roxy isnt alwasy around and has weekends off! Two days later another mean gran mal seizure hit me. Roxy was there but was leaving for the next four days to go home. Mom asked her to show her the way. Roxy explained and mom gave me the shot. I could tell mom was nervous but she did a great job and again within seconds the seizure stopped. Before the medicine used to work rectally but now it just doesnt seem to do the job. Injecting in intramuscular goes faster into my bloodstream and the medicine can work quickly. Thankfully on this day, one bottle did the trick. Mom continued practicing with a lime she told me it has the same sensation as my booty!

It’s been two weeks since the shot episode, I have continued to have seizures daily but thankfully hot any that have required my parents to use the dormicum. So even though patience must be had when it comes to a surgery date for me it is hard for my parents and Roxy to see me go through so much daily. We just keep praying and know that God will figure it our for us. Any extra prayers anyone would like to send my way would be great. <3 Love Malia xoxo