Archive for July, 2014

Begining to feel better….almost

Thursday, July 31st, 2014

We came home on Monday. It was a long journey but I did really well in the car as always! It was late when we got home. I was tired from the trip and everything else that happened to me and went to bed fairly easy…. Tomorrow starts the begining of me trying to eat all my food again. Mom and MJ are on poop patrol. My mommy whispered in my ear she would never let this happen to me again so she has been crazy about my poop and making sure I do so on a daily basis. If I dont go then the next think I know they are making me go with an enema. Yes an enema at this age. I had to do many of them before the procedure. Not fun at all. I know nobody likes to talk about poop but hey sometimes we have to! Is a fact of life! The first three to four days of the week I was doing better. I was sleeping more and not fussing much.

By the time day 6 rolled around I was back to crying hysterically, hands fisted and teeth grinding. What could be going on? Why is this happening again? There was no consoling me. Everything happened so fast. I am in pain again but I am pooping too! My parents were very concerned and mom called the doc and he said we needed to take an xray. We tried to get an xray here in Cobano! There actually is a machine in the small town of Paquera only one hour away. However the day mom called it was a holiday for public offices and they were closed and we would have to wait until next week. That was not going to happen! Next thing you know mom is calling for an airplane ticket on Sansa the puddle jumper. This was important and there was no time for a 5 hour drive. We rushed like crazy and got everything thrown together. My dad was out working and when he came in for lunch he was surprised and asked where were we going? We said to the Airport and you are taking us! Lets hurry!! That is the fastest I have seen mom and MJ move in a long time!

We arrived to airport with thirty minutes to spare before takeoff but the central office had not called the Tambor airport strip so they had no idea three more passengers were coming so they almost took off without us!! THankfully we arrived when we did!! So off to San Jose we went. Me, mom and MJ! Our good friend Krystal was waiting for us at the airport and took us CIMA. First thing I did was have my xray done and then we went to see Dr. Navarro. The doc told us that I am not moving my poop fast enough. He said we gotta get things moving faster!! So another laxative, and mineral oil, and I had to have another enema. :( We went back to Krystal’s to spend the night and we decided to stay an extra day just to make sure I was okay. I was not very happy in fact pretty grumpy about it all. I did manage to sleep. After keeping an eye on me for another 24 hours mom called Sansa again and she and I flew home on Friday. MJ stayed behind as she was home already for the weekend. Me and mom did a great job flying solo, thanks to our dear friend Arturo the taxi driver who picked us up and helped mom with our luggage and to keep an eye on me sleeping in the back of the car! The airplane ride was smooth, I slept most of the way. I am doing really well with my oxygen and breathing. The airplane is not pressurized and we were up 7000ft. and I was breathing on my own! Pretty good for a kid like me! :) Dad was there to pick us up and off we went home.

The following week I did pretty good. I slept one day almost the entire day. I have been through alot and my body needs to recuperate. Mom has totally switched my diet to vegeterian, lots of quinoa, and veggies, and coconut oil. I think this is going to help me. I hope to be riding my horse soon and back at therapy 100%.
Mucho amor,
Malia

Tummy problems…….

Thursday, July 31st, 2014

July 2
The time never ceases to fly…. Especially when you aren’t doing so well! Recently I have been doing great by not having any seizures. My new medicine has been helping alot and we are almost two months without a seizure. I am very happy about this as it makes me much more alert and I can focus more on therapy when I am not having to deal with seizures. However, one side effect of my new medicine is an increase in constipation. I pretty much was having to have my mom help me go potty every single day. Everything inside began to harden and the next thing you know I could not sleep and was screaming out in pain. My hands were fisted and I began to grind my teeth severely. My parents called the doctor and after several days of trying to clean me out and I still was crying we made the decision that it was adamant to get me to San Jose. Nothing was working. My tummy is my cryptonite it can take me down in a second.

We arrived to San Jose around noon and went straight in for a xray of my tummy. Turns out my tummy was FULL! Dr. Navarro, the pediatric surgeon looked at the xray and told us that everything was going to have to be taken out manually. This would mean putting me under anesthesia. He also said to come back at 4pm in the afternoon to have the procedure done. From how he explained it, it did not seem like it was going to be such a big deal. My parents know him very well and he has operated on me many times so we trusted that it would all be okay.

My mom and dad and MJ were with me, and then it was time to get my gown on and go to the surgery room. Off I went with the two doctors and said bye to my parents. The procedure took about 40 minutes all together. My mom was waiting for me in the recovery room. Only one parent can come in this room directly after surgery! I woke up and seemed to be fine! I had to stay an hour in recuperation to make sure I was ok. I actually came out of the operating room without having to take oxygen. After that I was taken to another room where I had to wait another hour. The doctor wanted me to have something in my tummy first to see how I handled it. We ordered a papaya smoothie. It really did not go down so good. I began to cry and was uncomfortable after listening to some soothing music on my Ipad I began to calm down and was given the green light to go home. Our good friend Krystal is letting us stay at her house until I recovery. She is always very kind to us!

Once we got home, the doctor had told my parents to give me some food. It really did not go down so well. So they stopped gave me my meds and after that I did not have a good night. The following morning I was not well at all! I had nauseas, much saliva that I could not keep control and pain in my stomach. I was not a happy camper. By noon my parents decided that it was time for me to go back to the hospital that something had to be wrong. My mom was sure that it was the anethesia but the doctor said he did not think so! Once at the hospital we took an xray and I was full of gas! Not good because that makes my tummy hurt. Dr. Navarro gave me a liquid med up my nose to help with the nausea and gave me gas medicine and tylenol. I did not go to sleep until 4am. I am doing weird things. I am not myself. I am not looking at my parents or friends and I am just right out of it.

By Thursday morning I was feeling a tiny bit better but not much. I am not able to eat anything. I am on a liquid diet. I have lost 6 pounds. :( Thankfully I had a good amount of weight on me! My parents tried to feed me again that evening and it just did not go well. I had a terrible night after the good. My doctors are thinking that might Nissen surgery might have come undone and that I am refluxing. My mom keeps blaming the anethesia. We went back to the hospital on Saturday morning. We did a gastro study to see if I am digesting correctly and to see if the Nissen is still in place. I was given a tiny bit of contrast liquid in my mouth I swallowed it well and then I was put on the xray table to see how everything was going down. Turns out everything is working perfectly and the Nissen is intact. So….. it turns out it was the anethesia and I had a terrible reaction to it, in fact for almost a week it affected me. I had been grinding my teeth so hard from being in pain that I gave myself a nasty ulcer on the roof of mouth that really hurt. Dr. Mermelstein my dentist gave me some gel to put on 4 times a day. It has been a very rough month!

Sunday night I slept all night long. I am a bit better.I am slowly begining to eat again. THanks to Krystal for being so kind and opening her home and heart to us. I will be going home tomorrow to fully recuperate at home.

Love Malia

Family Fun !

Wednesday, July 30th, 2014

Friends!

Wednesday, July 30th, 2014

Bday Princess!

Wednesday, July 30th, 2014

Birthday fun!

Wednesday, July 30th, 2014

Six years old!

Sunday, July 13th, 2014

June 17th 2014
Today is my birthday! I am six year’s old! I woke up in good spirits and the house was bustling with preparations. I slept in a little late then just when my mom was going to bathe me and get me ready for Maria Jose I began to have a severe case of the hicups. This has happened last year as well on my birthday. Next thing you know I was full of phelgm and on O2. Maria showed thinking it was time to do my hair but instead she took over respiratory therapy. I coughed a bunch of times and the next thing you know I was off O2 and getting showered and ready for my party!

Everyone showed up an hour late as Costa Rica was playing Uruguay in the World Cup! It was okay though that gave my dad plenty of time to fry the fish for our fish tacos that day! The first thing planned was dragon bag decorating. Maria Jose made all the bags for my friends and I to decorate for our gift bags! After that we had Felipe a friend and magician do a magic show for us all. Felipe did a great job! He had everyone paying full attention to his tricks! :) After that I was able to take my first swing ever with the help of Maria at my dragon pinata! It was fun and everyone was cheering me on!!! My friend Sade was the one who took the dragon down and candy was spilled everywhere for all the kids! After the pinata we were off to pin the tail on the dragon and take pictures in our portrait made dragon and princess photo opp! Thanks Lourdes and Irene for making such a cool thing for my party! :)

Towards the end of the party my good friends, Sarah, Rachid, Gemma, and Sade played a mini concert for me. They play the violin and chello and it was just awesome! My favorite part of the day was listening to them play. They played five songs for me and did a great job. Many kids rode the two horses I ride. I did not ride that day I was a bit tired but I had fun watching everyone else.

My friend Sahil came all the way from La Fortuna to see me at my party! He gave me the coolest gift it was all sensory gifts! He knew that would be the perfect thing for me. I was so pooped by the end of the day that I blew out my candles and decided to wait until the next morning to open gifts with my dad. It was a great party I am so loved and feel so blessed to be so special. Thanks to all who came and particpated in celebrating my day.
Love Malia