Malia Moore

June 16th 2012

Uncle George called my mom Friday night, they were taking a red eye into San Jose. Things did not start off so great as their plane was delayed in Dallas. By the time they made it Florida, they had missed their connecting flight. Uncle George was not a happy camper as he and Grace has a 7:45am flight out of San Jose to Tambor! They were able to catch the next flight out the following morning and it was late as well! By the way, don’t fly Spirit airlines says Uncle George! My mom was able to find them an afternoon flight into Tambor, they would be here by 2:30 pm! Yeah!!!!

Once Uncle George and Gracie arrived to San Jose, they called to tell us they had made it and so that mom could explain what we had arranged while they were in the air. Uncle G, had a bit of an edge to his voice he was not happy with Spirit! Why?? Because they lost his suitcase. Well, actually it was my suitcase! It had ALL of my birthday presents in it! My birthday decorations, my lady bug cake pan and many more important things like medicines, syringes, etc. Now mom is not a happy camper either!!! We figured we would have our suitcase the next day and that it would be coming in on the red eye flight that ngiht so we did not worry too much about it! My birthday is tomorrow it would be cutting it close but we could probably wing it!

It was awesome to see G&G! I love that they come to see me every year on my birthday! It is now a tradition! I love them both so much! Gracie and I have fun together!! Mom went to pick them up and we all went for another stroll down the beach that afternoon! My favorite thing to do at the beach! 🙂
Love Malia

June 15th 2012
Woohoo!!!!! We made it home from San Jose on Wednesday evening! On Thursday we unpacked our city clothes to repack our beach clothes!!! We are headed out for 5 days to Los Delfines, Tambor!! A client of my dad’s and now good friend offered her lovely home to us to celebrate our birthdays in style! Julie and Craig, have a beautiful home steps from the beach in Tambor. It is just awesome! Irene is coming with us and George and Grace will fly into Tambor on Saturday!! 🙂 I cant wait! Finally a little bit of rest and relaxation!!! We are all very excited about our trip. For now, all doctors, testings, and any other non fun thing will just have to wait!

Friday morning Luisa showed up to help get us all packed up for our vacation! You know we take everything but the kitchen sink with us everywhere we go! We made it to the beach around 4pm. Today is my dad’s birthday! We are celebrating his day with a stroll down the beach with me at sunset, a yummy chocolate cake for him, and a yummy dinner mom is whipping up! Dad is happy because he has his girl’s with him including Irene! 🙂 Happy Birthday daddy, I love you soooooo much!
Love Malia

Today our appointment is back in downtown San Jose at the hospital I was at yesterday. Our appointment is at 6pm to see the nephrologist. She was running late and we did not get in to see her until almost 7pm. Mom had already started my supper outside in the waiting room. She was nice. I think she was a little overwhelmed with all my information and the fact that mom told her she was our last hope that we had had every exam possible to discover why I was having all these infections and we just keep coming up empty handed.

She was a good listener, she examined me and in the end she told us that there were many factors to why I keep getting these urinary tract infections. I have problems with constipation, I am always in a diaper and it is very easy for poop to get inside my urethra. So with that being said, she told my mom to put me on two prophylactics and to give me vitamin D, lots of citrus juices, and hopefully I will just stop getting these infections.

We also encountered on this trip that my sodium levels were low. This is called Hypnotremia. It can be very dangerous if not corrected right away. I have been sleeping lots much more than normal, one day I slept until 1pm. It turns out that my sodium levels were way down and sleeping too much is a symptom of sodium being low. The doctor suggested that I have some tests run to check and see if the reason my sodium levels are low is because salt is lacking in my diet. Our plan is to head home tomorrow but now we have to make a quick run into CIMA and have blood drawn so the doc can analyze my sodium situation.

Wednesday morning we got up and got everything packed up and headed to CIMA. When you have to catch a ferry you want to make sure you give yourself plenty of time! We got to the hospital by 10:45 and our goal was to leave by noon. We are shooting for the 2pm ferry! By the way did I tell you Uncle George and Gracie are coming in this Friday and that it is my dad’s and mine birthday this weekend!!! We managed to not have to say in San Jose too long and we actually are going to be able to enjoy our birthday weekend!!!!!
Love Malia

June 11th

Today at 5pm I am having a urodynamics test done. Since this is all new to me and my parents here is the webster definiton. “Urodynamic testing is any procedure that looks at how well the bladder, sphincters, and urethra are storing and releasing urine. Most urodynamic tests focus on the bladder’s ability to hold urine and empty steadily and completely. Urodynamic tests can also show whether the bladder is having involuntary contractions that cause urine leakage”.

Since I have so many recurrent infections the doctors thought this might show us something. I am having this exam done at a different private hospital located downtown. 5pm is the appointment and trust me mom is a stress ball driving downtown. Irene is helping her with directions, but then Irene sometimes gets her left and rights wrong and we make quick turns! 🙂

We made it thru the madness, and I mean it is crazy in downtown San Jose. You see CIMA is in Escazu and that is an entirely different scene! Anyway we made it! The procedure, well it is nothing really nice. Three catheters are put inside me. One is to measure the activity with a sensor and the other is to allow the urine to flow freely. The third is put in my bum. Yep I know, not fun. I actually allowed the nurse to do this all to me without too much fuss. The doctor then comes in and says to my mom “I am running a little behind and need to see another patient I will be back in 30 minutes. Is that ok?” My mom, uhh no that is not okay do you not see my child hear laying on the table with tubes coming out of very inconvenient places.. I mean seriously why don’t you tell your other patient that you will be thirty minutes late. Needless to say, that is exactly what the doctor did he came back within 5 minutes and during that time well the extra stimulation to my bum made me well….. can you imagine what happened? Yep that’s right. We had to take all the catheters out clean me up and do it all over again! This time I was not so willing for the assistant to put the catheters back in and I fought her. It took longer than usual as I was not so willing this time. My mom was talking to the doctor about me and showing him my file which is like a huge book with all my exams and tests and Irene well she coerced me into letting the assistant put everything back in me. I listened to her and decided she was right one way or another I was having this test done and the sooner I relaxed the faster it would be over. The test began.

The results. We found out that my bladder is smaller than a normal child at my age. I should be able to hold 160cc of fluid in my bladder but instead I hold only 80cc. We repeated this three times to make sure. Everything is working properly. They were filling my bladder with sterile water. The good news is that every time I urinate I completely empty my bladder meaning no urine is left behind and that eliminates the possibility of me getting infections. The doctor was not too concerned that my bladder was small. This is not a reason for my infections. He suggested I take one more exam, which I have to do with an infection present. We hope it is a long time before I get another infection. The doctor was nice enough and we headed back to Turrucares. It was almost 8pm by the time we got home. It was a long day tomorrow I see the nephrologist.
Love Malia

We arrived home from San Jose around 5pm. We are all pooped! This has not been a good week for me. I have had seizures, have been sleeping way too much, have had lots of reflux and hiccups, and overall not happy. Mom fears that the antibiotic is not working. Our dear friend Holly, has helped us get in touch with a infectious disease Doctor in Boston. She has been very kind and has been speaking with my mom. Mom has sent her a ton of my reports to look over and she has sent them on to a pediatric urologist at Boston Children’s hospital. Hopefully they might see something that the doctors here do not.

Since I am being so lethargic, and continuing to have seizures on a daily basis we have come to the conclusion to go back to San Jose on Friday. Geez we have not even been home a week this time! Back to the ferry we go. Dad is driving us in and we will be spending the weekend in Turrucares again. I cried pretty much the entire way to San Jose. I am not feeling good. We went straight to Cima to catheterize me and to do another culture. My first pee test comes back clean now we have to wait three days to see if culture shows anything. It should be negative I am taking this heavy duty antibiotic! What else could be going on?

We went to Irene’s farm house out in Turrucares and spent the weekend there. Dad went home on Sunday and drove Irene’s new 4×4 Jimmy home! Now that she is living out in the jungle she needs 4×4!!! Dad took the 8pm ferry so he could stay as long as he could with me. We are planning on running more tests. My parents are determined to find a reason why I keep getting these infections! Hopefully something good will come out of this trip.
Love Malia,

We left for the 11am ferry. Dad helped us get hurried out the door in order to catch the ferry on time. We have many many things to pack up! We arrived at CIMA at 2pm. I was catheterized and had my blood tested. The blood test came back fine but the urine test came back dirty. Normally I always have clean urine and a positive culture. This time with the urine coming back dirty right away it definitely means their is an infection somewhere. I am a tad bit irritated and tired. We head out to Turrucares. A small town outside of the big city San Jose. It is a lovely farm house with lots of fruit trees, and a swimming pool and it reminds me of being home. Irene’s parents are so very kind to let us stay here, it saves my parents a ton of money not having to stay at a hotel. I love it out here. When we showed up Irene’s parents Lourdes, and Kiki where there when we arrived. They were so kind, they bought us dinner and me some papaya and yogurt and Lourdes brought mom some mommy medicine… aka a big bottle of red wine to share. They are the best! Mom thoroughly enjoyed talking with them. Irene had crashed as she had a headache as mom and Irene had not eaten anything all day. That night I did not sleep so well. I cried pretty much all night. I usually do when I am away from my home the first night. Mom put the water bottle on my tummy and it soothed me and I was able to fall back to sleep around 4am!

On Wednesday we went into to see my dentist Dr. Mermelstien. He cleaned my teeth for me and said he was very very impressed with my oral hygiene! I did not mind too much him having his fingers and tools in my mouth. I have to say myself I behaved very well. After my dentist appt. we had lunch at Linda’s my first physical therapist ! Matter of fact it is her husband Simon who is my dentist! We had a lovely lunch at her house. After that mom and Irene and I went shopping price smart (Costco) to buy diapers and things for the house. We then headed out to Turrucares. I slept much better that night. Mom was just sure that we would be able to go home the following day.

At 10am my mom called the laboratory and asked what the culture had shown. Turns out I have an even nastier bacteria called Enterbacter Clocae. It is a very resistant bacteria. There is only one drug that is going to work without my having to get hospitalized and receive the antibiotic intravenously which is not going to happen. My pediatrician called the infectious disease doctor and asked what we should do. She suggested I take a drug called Ciprofloxacina. It is a very big broad spectrum drug that seems to be the only oral antibiotic that will kill this bacteria. The only problem is that this drug is typically not given to children under the age of 18. The reason why is that the antibiotic penetrates down to the bone and can stunt growth. Mom was not happy to hear this and called the urologist and asked his opinion. He told her she could use a different drug completely opposite of what Dra. Castro was telling us. So mom called dad and he said to ask another one of our doctor friends Dr.Armando who took care of me in ICU that year at the children’s hospital. He told my mom not to think a second more and to give me the big drug. Well that was now three doctors against one so mom made the decision to go with the Cipro drug.

The only catch with this drug is that is has to be specially made. It is now Friday morning and mom is trying to find out how we are going to get the drug as CIMA the hospital does not have this service. It was a complete fiasco for my mom to get the drug made. By 11 we still had no answer and what they were trying to tell us was that the antibiotic would not be ready until Monday. That is when I thought mom was going to have a nervous breakdown. Monday??????? Are you kidding me? I am sick and need the drug now!!!!!! Irene ended up taking over as my mom was losing her patience and thankfully Irene calmly told them our situation, that it was not easy for us to just jump up and move anywhere quickly and could they please understand our situation and have it made that day. Well they finally said yes, it would be ready by 5pm. This laboratory is in downtown San Jose and it is Friday and 5pm! Thankfully Irene’s sister Carlotta works downtown and was able to swing by the lab and pick it up for me. It was so kind of her help us out. We waited at Irene’s house in Escazu for Carlotta to show up with the drug. We are heading home tomorrow for our home in Delicias. Mom had decided we will come back in ten days to do another culture and see if the bacteria is gone. What a very very stressful day, thankfully all I have been doing these days has been sleeping. Mom on the other hand, well she is one big stress ball!

Love Malia

May 5th thru 13th
The week after coming home from the hospital. I continued to have stomach pains, there is nothing worse. Mom and dad continued with the hot water bottle, Irene gave me tuns of tummy massages, I am taking an anti gas med now, and for some reason my green veggies are bothering my tummy now. Mom gives me her homemade yogurt, I get probiotics but still I have tummy problems. It was hard for me to get back on track as I was not sleeping well at night and uncomfortable during the day. During all of this I had a few good therapies with Irene.

May 14th thru 20th
The following week I had an entire mess of seizures! My Neurologist decided to take me off one of my seizure medications since we had introduced another medication. He preferred me being on two instead of three. We slowly began to wean me off Trileptal. Well, that was a very bad idea. The day that I was no longer taking anymore of the medication I had a blue seizure. Remember those? Those are the ones were I stop breathing. I woke up at 6am doing it and continued to do through out the day . Matter of fact 11 times. My face turns totally blue, and I stop breathing. Sometimes I stopped breathing for a minute. To my parents, this minute felt like a hour. Mom of course called the neuro and said bad idea on dropping the med and he of course told us to start it back immediately. We of course already knew this! Mom had already given me a dose. The second day was worse I stopped breathing 15 times. All I was doing through out the course of the day was sleeping, waking up , stopping breathing, and going back to sleep. It was so scary. By Friday, I was getting better less and less seizures and by Sunday the blue seizures had pretty much gone away. The lip smacking was still around, but as my mom said she will take me smacking my lips my mad over me holding my breath any day.

May 21thru 27th
Monday I did not start off the week so well. I was crying a lot and agitated. My stomach is giving me problems again or so it seems. Irene is doing many exercises with me to help get things moving and many massages on my tummy. I have to take a laxative everyday to help me go potty but sometimes even the laxatives don’t help. You would not believe how many prunes I consume in a day! I had a small infantile spasm this evening but it did not last long only 8 minutes. I continue taking the gas medicine and now I am lip smacking a lot pretty much everyday. Also my mom found some green stuff again on my diaper again and this is usually never a good sign. Mom sends a photo of it to two doctors. Both say not to worry if I don’t have any fever or show signs of being ill.

On Thursday mom had read that flax seed water helps with constipation. So mom boiled up the seeds, strained the water and the following day gave me the water before my breakfast. Everything seemed to go fine. Ire showed up to give me therapy and on this day it was a hurricane outside. The wind and rain was crazy. I began to hiccups at 10 am and continued throughout my therapy. When Ire, came downstairs with me for lunch she told mom that she heard much phelgm in my lungs. They went back upstairs and tested my O2 and I was at 82 and dropping! Not good! So mom hooked me up to the O2 and they began to give me therapy. Mom became worried because I sounded so terrible and my stomach was extended so she called Jose my respiratory therapist in San Jose. He suggested that we put my feeding hose back on my tummy to help air out the gas and whatever else might be in there. I know this is probably too much detail for you all but when we put the hose back on all of my breakfast came back out. I had not digested one thing. Turns out I had a terrible reaction to the flax seed drink that morning. I did not have lunch that day and all Ire and mom did was work on my lungs and mom had to bring out the aspirating machine and aspirate me a bunch of times to get out the phlegm I had. It was awful. Dad had been working all day and when he came home at 5 to find me Ire and mom in full on hospital mode needless to say he was quite surprised. Finally we got rid of the gunk in my lungs, I was able to rest and that night mom did not give me anything but some chicken broth so I would have a little something in my tummy. The next day things were back to normal. Or at least a little bit but the flax seed we will never ever do again.

The weekend rolled around and I am now sleeping lots, lip smacking lots, and have the green gunk daily. Even though I have no fever mom and dad have made the decision that it is time to go in again. Irene and mom will be leaving on Tuesday. As much as we all do not want to go mom says her mommy instinct knows something is wrong. The plan is to go in on Tuesday and hopefully be home by Thursday.

Could it be possible that I have another infection? I sure hope not.

Love Malia