Malia Moore

Once mom and I arrived home from the hospital we both took the rest of the day to rest. My parents had changed our plane tickets from Monday to Wednesday. We all agreed it would be too much to take me straight from the hospital to Texas without having a chance to go home and at least recuperate a few days before my big journey. Saturday the unpacking began and Sunday the repacking started! Many of you know that I have quite a few items that I have to take along with me. Such as my 02 machine, aspirator, nebulizer, respiratory vibrator, hoses, syringes, medicines, and much more… My medical box that we take with us weighs almost 50lbs by itself! Needless to say when we travel we travel with alot!

Tuesday arrived here quickly. We were ready to begin the journey! We caught the 2pm ferry and headed to Krystal’s! We had a early flight Wednesday morning which had us leaving Krystal’s by 5:30am the following day. So far so good. I am feeling good and ready for this trip! We arrived to the airport with no problems and check in went smoothly!! American Airlines always lets us preboard first as we do take a little time! 🙂 The fligt is just over 3.5 hours. I am getting excited about seeing George, Gracie, and Scout! We wont have long to stay with George as we have to head to Austin the next day! We will be staying with Uncle Andy for a night before we check into our rental home. My grandma Marg, Holly, Mark, Ella, and Kathy all fly in on Friday! We really were cutting it short this year coming in so late and the benefit being this Saturday September 27 2014!

We arrived at George’s house late afternoon. Mom and Maria Jose wanted to go shopping so dad stayed with me and we took a nice nap together! Mom had to go and buy all my food to make since I eat three different types of grain, Aramanth, Quinoa and brown rice! She had much cooking to do for me! I am doing so much better on my new diet! That evening my parents, George, Janet and Katie went out to dinner at Mi Cocina, mom’s favorite mexican food restaurant and MJ, Grace and I stayed at home watching TV. I was in for bed early! It has been a long day!

Thankfully my Aunt Theresa is loaning us her car like she does every year! The mini van was waiting for us at George’s house. She is so kind to us!!! It is a huge help and gigantic savings for my parents not to have to rent a car while we are in Texas. Thanks again Auntie T!!! We are truly blessed with all the loving family and friends we have in our lives!!
Malia 🙂

The 8 days at CIMA went by pretty fast. My dad left on Tuesday to go back to work and mom stayed with me. We’ve been reading books and watching cartoons. MJ came back to work on Tuesday and we started a small amount of therapy.

There is always side effects with antibiotics. And of course the side effect of this drug is seizures. Even with a 104 fever I had no seizures but after day 5 of taking Menroprem I began to have small seizures. It is really bothering me. I am not used to having them now. I am doing different types too like eye blinking, and smacking my lips as well as some jerky movements. I sure hope this side effect goes away soon. I have been doing so good.

Our plan was to leave the hospital by noon. I did not sleep at all the night before. I cried, and was agitated. Mom was up walking the hospital hall with me in the stroller. We were both up till 6am. MJ showed up at 6:30am and started getting everything ready and fed me breakfast. Mom was able to sleep an hour, and me too. We have a long drive back home and I know mom needed to some rest before our road trip together. Dra. Castro is coming by to take out my PICC line! Yeah.

We managed to leave on time and get home by 4:30pm. Dad had dinner made and was very happy to see us. Our flight to Texas was suppose to be on Monday but we pushed it back to Wednesday… I needed to rest and go home to my bed before making any big trips. I am doing pretty good here at home. Seizures are still messing with me but I am hoping that will go away soon!
It is so good to be home.
Love Malia

Now you may be wondering what is a PICC? A PICC line is, by definition and per its acronym, a peripherally inserted central catheter. It is long, slender, small, flexible tube that is inserted into a peripheral vein, typically in the upper arm, and advanced until the catheter tip terminates in a large vein in the chest near the heart to obtain intravenous access.

I did not sleep so great that night. I never do before any surgery. Mom gave me a some fruit at 2am as I can not have anything to eat after 3am. We went down at 8:30 to the surgery waiting room. Dr. Navarro and Dra. Trinosky came by to talk with my parents and sign the forms before I went in to surgery. Dr.Navarro told my mom that the procedure would take 30 minutes maximum an hour. I went in at 10:00am. At 11:30 am I still had not come out of surgery yet. My parents were beginning to pace. So many things can happen inside of that room. Finally at noon Dra. Castro wrote a text to my mom saying that they had complications in finding a vein to put the PICC in. In the end Dr. Navarro had to call for a ultra sound machine so that he could have the ultra sound guide him to put in the catheter. The catheter is 32 cm long. The problem is that my veins are not straight but more so like curvy roads. The doctor had said that he could find a vein but when the time came to run the catheter line up my vein he would get stopped as the vein was not straight but curvy. This is due to so many antibiotics as well. He finally found a vein in my upper left leg.

Finally at noon they came to get my parents. Only one could come into the recuperation room. I had hypothermia from being so cold in there and they had me bundled up and a heater blowing into the sheets to keep me warm. Mom came in and sat with me while I woke up. I am breathing fine and not entubated so that is a great thing. They came in to take an xray of my chest to make sure that the catheter was placed right. After waiting an hour in recovery we went up to my room. A little later I was taken downstairs to have an ultrasound on my kidneys to make sure that the bacteria had not infiltrated my kidneys. Good news, it had not, it stayed in the urine and had not spread. Right now I have to get used to not doing anything for the next 8 days. 
Love Malia

You may ask what in the world is that? Well it is a very resistant bacteria that got into my urinary tract. Ecoli lives within us, this is not something I picked up at a bad restaurant. I have dealt with UTI’s all my life. You may remember that two years ago I had 9 UTI’s in one year. There is always a risk in taking antibiotics. They can create resistancy to the bacterias. This is exactly what has happened to me.

On Monday, September 8th, I began to feel bad. I was fussy at the dinner table and normally I am not. By the time I went to bed I was hot. Mom took my temperature and it was 99.8. Mom decided to leave it alone and see if it would go up. At midnight I was fussing again and mom took my temperature and it was 103.4. I never get high fevers like this and this made my parents worry. By Tuesday morning it was obvious that I was not feeling well. My temperature was not coming down. Mom and MJ began to get everything together to leave for San Jose.

We ended up taking the 5pm ferry. Mom called Jonathan who draws my blood and Carmen who is really great at catheterizing me. Both of them agreed to meet us at Krystal’s at 8 pm. Mom did not waste another minute to get the lab work started. My PCR came back high at 37 and the rest of my numbers did not look so bad but my urine sample was dirty. It takes up to three days to determine what bacteria is growing in my urine. This is always the hardest part, waiting to see what bacteria is messing with me. While waiting I am not feeling any better. My fever keeps skyrocketing and three times now I have hit 104. With a fever that high seizures are always at risk. Always…. Unbelievably I did not have a seizure during this time of high fever.

On Thursday afternoon Dra. Castro called my mom and told her she needed to bring me to ER. She said that the bacteria I had was very bad and resistant to all beta lactames. The only drug that is going to kill this bacteria is Menroprenem and this is only administered by IV. This was devasting news to my parents. My mom had originally thought we would be going back home and taking oral antibiotics. Now I have to be admitted to the hospital for 8 days. I have to be put under anesthesia in order for a PICC line to be put in so that it will last the 8 days I am in the hospital. Mom had a hard time with this, I have been so healthy as a matter of fact this is my first UTI in two years. I guess if I had to have one it had to be a doozy!

Mj and Mom started packing again, and we were to meet Dra. Castro at 6pm in ER and at 8pm I would get my PICC by Dr. Navarro. When we arrived to CIMA a few things had changed. The anethesiolgist that works with Dr. Navarro and knows me was not available so Dr. Navaroo decided that he wanted to wait until the morning to put in the PICC as he only wanted the best for me. He was able to succeed and put a small IV in my hand so that I could begin to receive antibiotics. I really needed for that fever to go down. We went up to my room for the next 8 days and said hello to all the nurses and doctors who know me.
Tomorrow morning is my surgery. I hope I get better soon. I have a big party in Texas coming up really soon!
Love Malia

Me mom and granny went swimming at Chrissy’s today! It was so much fun! I was so excited to get in the water. I absolutely love to swim! I moved all around kicking, floating, turning….It is such freedom for me. I am weightless able to move and do whatever I want. The feeling is incredible, I make cooing noises and smile alot when I am in the pool. It is very relaxing for me and it is a great workout too! I am taking my float to Texas with me hopefully will be able to go for a swim or two while I am there. Mom took a video of me! Enjoy!
Love Malia xoxo
https://youtu.be/87ZkAZUFVvU

August has been a busy month. I am still recovering from the “procedure” in July. When I got back from San Jose me and mom both had a bit of a cold. We managed to knock it pretty quick. I think I handled mine better than mom!! Ha! Back in July, a dear friend of ours Janet Mitchell, also my MC at my benefit each year had planned to come visit us for the first time! My mom ended up calling her and telling her it would be a good time as I was not doing so hot and were having so many poop problems! So Jan Jan, changed her ticket for August 3rd. The day before Janet arrived my mom did not feel so hot. She had a temperature and Monday morning hours before Janet arrived mom went to the clinic to have her blood drawn. Turns out Mom has DENGUE! ohhhh no!! We have heard horror stories about this Mosquito Virus and now my mom has it! Mom had been showing properties in St. Teresa where the majority of cases are and looks like one got her!! So for the next ten days mom was wiped out with crazy high fevers and I was not really happy about this and was giving some hell to everyone during the week Janet was here. Needless to say, mom and Janet did not get to do much together as mom was always in the bed moaning! 🙁 I myself am having an off week. I am not sleeping at night, crying, not doing well with the poop either. Not a good week for all a matter of fact we are heading into the big city to do some blood work, see my dentist, and a visit my Gastro’s office to talk about well yes you know the word…… POOP!

On Monday August 11th, we arrived to SJO and went to CIMA took my blood (digna did an okay job) my favorite blood sucker does not work there anymore but Digna managed after 3 tries. We also have another xray planned just to make sure I am backed up as I had such a bad week at home.The dentist appointment went great, I dont mind Simon sticking his hands in my mouth anymore. I actually was quite laid back about it all! Good report no cavities! The Gastro appointment went well too. Dra. Jiminez upped my dosage of Miralax and said we had to keep things moving. All in all it was a good trip. We headed home on Wednesday and I am feeling better overall. MJ stayed behind for the weekend so we wont be seeing her until Monday!

On Friday, I have a new girl that comes to play with me. Her name is Kayleanna, she is the daughter of Joe Callahan a good friend of my parents. My mom has known Joe since she was 19. She is really sweet and feeds me lunch and MJ showed her how to stretch me and do things with me! She helped me make a birthday card for my good friend Shadi! Shadi and her parents are coming over in the afternoon to go swimming with me. Me and Shadi had fun in the pool together. Shadi was pulling me around and we had fun swimming. I wasn’t able to make Shadi’s birthday party as mom was sick so we celebrated here with cupcakes, gifts, and my card! I love Shadi. She is a good friend and includes me in with her friends and that makes me feel really special. Her mom Tiani, is great too! She always pays attention to me! She is forever talking to me and holidng my hand we play a bit together me and Tiani! That night she did a little reki with me and I liked it. I feel very comfortable around her! 🙂

Amazing enough even with all the products I am taking to help me go potty better I am still having issues and that sometimes makes me just wanna cry alot! However I am doing exceptionally well in therapy. Maria Jose says I have reached a whole different level in therapy!! I am doing really well standing, sitting, and expressing myself!! 🙂 Matter of fact the therapy helps me go!!! It may just take me a while to get back to normal. All in all things are better just hoping to turn better into great! Soon we will be headed to Texas for my 6th annual benefit!! Can you believe it??? I am 6 years old!!! I am getting excited about being able to see all my family and friends!
Love Malia

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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