On Tuesday me and my mom and dad took out for San Jose. We are on our own this trip as Cinthya is on vacation for a week! She definitely deserves a vacation, even though I know she misses me! We miss her too!
Our mission for this trip was to retrieve my corset. Remember the video I put up? When the therapists came out to make the cast for the corset! Well it was ready to be picked up and tried on. The plan was to meet the therapist at CIMA Hospital on Wednesday morning to try the corset on and take a x-ray to see if my curve in my spine improves.
The trip in itself was uneventful we pulled out from our house at 10:30 am for the noon ferry and we were at Price Smart in Santa Ana by 3pm. Mom and dad needed to do some shopping so we all went together. Typically, if Cinthya would have been with us, I would have stayed in the car with her. It was nice to go in and go up and down the aisles. I know my parents are always being careful and not wanting to expose me to a lot of people but being able to go inside the store and look at all the things and people really made me happy. I of course had my mask on! After that, we headed to the hotel in full on rush hour traffic…. It’s pretty crazy there and driving at that time is never fun! I went into a seizure just past the toll booth, thankful it didn’t last long. Nothing worse than driving down the freeway and having to pull over for an injection of Valium. We got to the hotel safe and sound, ordered some take out and were in bed early!
That morning I had three seizures before we left for the hospital to get my xray. Unfortunately, it was day 5……. If you don’t know about day 5 that usually means I am going to have a seizure that needs intervention with Valium to get it to stop and a shot in my bum.. Not fun for any of us. I was hoping that possibly today this would not happen. I sure did hear my mom praying for it not to happen. We left the hotel at 10:30 to meet Carles at the hospital. He was there with my new corset. After we paid for the exams, we were called back to the xray room. There were familiar faces that new me and were happy to see me. At one time, when I was much younger, I was constantly in the hospital and had made a bunch of friends. Glad that I was only there for a xray and nothing else!
Once we went into the room about 30 seconds later I went into a seizure. A really really strong one that causes me to shout out, after about a minute it stopped. Then just when we were going to get me out of my chair to try on the corset it happened again. This happened another 4 more times. Finally it stopped after about 5 minutes. I still had a little jerking going on but it was now or never. Carles helped my mom put the corset on me. The lab tech gave my parents the robes they need to have on to prevent too much radiation and told my mom to hold my legs tight and for my dad to raise my hands over my head so they could get a good picture. Just then I made another hard seizure jerk. My mom looked at the tech and said hurry fast and get this picture taken. We got it done. Then by the time we got the corset off me I went into another seizure and both my parents knew that it was not to stop. My mom ended up injecting on me the xray table. It took another ten minutes before it finally halted.
One could look at the situation that occurred in different ways. I know my parents were upset they hate seizures as so do I and I know it really bums them out when they have to inject me. On one hand, we could not have been in a better place than the hospital. This could have happened anywhere, such as on the freeway, in pricesmart, out in the parking lot. I know it is important to always look on the bright side of things and stay positive because if you do not you can become really sad.
We went back to the hotel for a bit before I had to head out one more time to go and see the doctor. The same man, Carles, met us at the appointment. The doctor wanted to see me in my corset and if there were changes to be made that Carles could take it and make cuts at his office. Our appointment was practically down town and at 4:30pm…. We made it on time and when the doctor saw my xray he was happy with the difference it made. My curve with corset on adjusted from 50%-35%. The goal is for me to wear it four to six hours a day! Carles did have to make adjustments and we were to get back from him the following morning before we left back for home. We headed back to the hotel and just as we were approaching the hotel room I went into ANOTHER seizure. This normally would never happen after having an injection of Valium only 7 hours before. It did happen and my parents did have to inject me another time as the seizure would not stop after 5 minutes. My parents were super sad and frustrated that I had to go through this again. We don’t know the answers why, nor we will ever at least not here on earth. Just grateful that the seizure finally stopped and I was able to rest.
The following morning Hannah came to the hotel with the corset we tried it on and it fit better. My parents were rushing around packing up the hotel room and getting ready for us to leave for the ferry. Thankfully we had no traffic delays and we made the ferry on time. We arrived home around 6:30pm…. Mom took me straight to the shower… I don’t get the same kind of bath at the hotel like I do at home.. The water felt so great and mom gave me a little massage and stretched me out on the couch to relax, while my parents made my dinner. It was soooo good to be back home!
Will be trying out the corset tomorrow!
Love Malia xoxo
