Archive for January, 2016

My how time flies…………

Sunday, January 31st, 2016

After Thanksgiving we headed home Saturday. We were going home with my new therapist Natalia. I feel very blessed to have her in my life. She has been amazing so far. She is kind and caring and her family is the same! We are so very blessed to have such wonderful people come into our lives. My mom was not feeling so hot. She thinks she might have picked up my cold this time. She never gets sick but we have been under a lot of stress and that alone can wear a body down!

We were not home for even a week when we were turning around back in the car and headed to San Jose! I began to cough again, fever came back, I can’t hold down my food, have severe nauseas, I can’t throw up because of the Nissen surgery, I keep trying and it is awful because I can’t. I am crying and I am not sleeping. Me mom and Naty (Natalia’s nickname) left for the 2pm as mom had called ahead to ER to let our favorite ER doc know we were on our way! My pediatrician was out of town so we had to go to ER to see Dr. Zuniga and get me checked out again! Our trip into San Jose was a major journey! The toll road was closed due to an accident so we had to take the old road climbing mountains, switchback turns, and 18 wheelers that drive 5mph. Mom had not taken that road in years, and Naty is our new copilot who has yet to download GPS so we had some excitement getting to CIMA. She did get it downloaded on the way up to San Jose and made it! A trip that normally takes us 4.5 hours took us 6!

Dr. Zuniga checked me from head to toe. My blood work came back normal, my lungs were better than the last xray but I am unable to eat, and continue to drool which I never ever do, I am uncomfortable and I can’t sleep. It has been six days straight since I have had a good night’s sleep. My mom and Natalia are giving me respiratory therapy at all times during the night! We decided to take another xray of my stomach and it turns out I am impacted again. Impacted?? Yes impacted. I have been impacted before. It was awful and it had to be surgically removed and one week of my life was totally ruined by this procedure. This all stems from being constipated… Even though my mom doesn’t let me go a day without pooping it still can get backed up. Mom and Dad promised me they would never let that happen to me again the surgery that is! So we called the gastroenterologist that has seen me in the past and she suggested flushing me out with a huge overdose of Miralax, and that is what we did, it was successful! The reason I was drooling, vomiting, gagging, was from all the pressure of poop backed up in my system. :(

Finally Dra. Castro came back! We were so happy she returned. She is the best doc ever. She loves me so much and is truly concerned for my well being. I am not saying that other doctor’s do not care but Dr. Castro and I have a special bond. We did another urine exam when I had arrived to see how things were and it turned out that nasty bacteria Klebsiella had never gone away. Dra. Castro checked me all over and we took another xray on my tummy. It turns out my colon is terribly distended and full of a ton of gas. The miralax helped me clean things out but it also can cause terrible amounts of gas. So no more miralax for a few days to give my tummy a break. Since I have the same UTI that never went away I had to start another round of antibiotics. This time they gave me CIPROFLAXCIN. This drug typically is not given to kids under the age of 18 except on special occasions such as mine. Cipro is no fun. It is a hard core antibiotic. It KILLS EVERYTHING! Not only does it kill everything good in your system it and after day 5 of taking I began to have seizures that would not stop. Unbelievably during all this time I have been sick I have not had a seizure since the 7th of December, not it is 2 weeks later and I began to seize where I can not stop. It has been three years since my parents have had to give me Diazepam (VALIUM) the cannabis oil always works on me but this time, with this drug, it did not work. My mom had to administer three different times valium to get me to stop seizing. We called Castro and we stopped CIPRO. No more. We started back on Denvar for another ten days to make sure and try and kill the Klebsiella. May I mention that our dear friend Krystal let us stay at her house so we could take a break from paying for a hotel. She is another angel in our lives!

On a positive note, we are finally going to be able to get my new wheelchair accessible van! Thanks to my family and friends that help me raise money each year at my benefit in Austin I was able to purchase a van! This was not an easy feat. In Costa Rica people who are disabled are able to purchase cars without taxes, (a $10,000 savings) However the process to get the car exonerated from these taxes took us eight long months to get! After much bureaucratic red tape and many trip to the government offices we will be given my new van! I can’t wait. It has been long overdue for me to ride in comfort and not in a baby car seat anymore. My feet were touching the floor of the car! It was long overdue but worth the wait and hassle. My parents went to pick up the car and then we had to drop it off at a place that specializes in converting the back of the van with my wheelchair accessible ramp! We had to grease some wheels in order to get the car out days before Christmas but we did it! Can I say again how blessed and grateful I am for all the good things that can and do happen in my life.

We drove the van home on the 19th of December. I am sill affected by the CIPRO, my seizures have come back off and on ever since taking that drug. Some days worse than others….My stomach and constipation problems have not gone away but I can only hope that after arriving home I can stay there for a few weeks without having to return around and go back to San Jose. Christmas came and passed and I was thrilled to see my other set of grandparents and my cousin Casey and his fiance Leslie. They all arrived on the 31st of December and we celebrated bringing in the new year together! It was a lovely time together and I am thrilled to be a able to be home.

Love Malia