Malia Moore

June 17th, 2012

I am four years old today. What a great feeling to be four! Today is going to be a great day, I get to hang out with the people who love me and spoil me so much! Would you believe that the suitcase is still not here and it is not looking like it will show up today for my birthday!! 🙁 Mom and Uncle G have been on the phone with many different people at the airlines but nobody seems to know where it is!!! BOO!! That is okay, the party will still go on! The weather is nice, no rain insight and we are planning our get together at the pizzeria on the beach with a few of our friends!

Mom began to work on my cake that morning and dad me and Gracie went for a morning stroll. Unfortunately Irene woke up this morning with a scratchy throat and went straight to Delicias. She did not want to be around me in case she was sick we were all very sad to see her go! Uncle George was helping mom with the cake when he asked if any of us who went on a stroll had put sunscreen on? Mom replies, I don’t think so!! When we came back from our stroll dad’s back was red and my legs were a darker color! I did inherit my mom ‘s skin though as my legs turned into a nice brown by the afternoon! I got a great tan now for my party!! 🙂

Mom is making a butterfly cake since the ladybug did not show up! Gracie came in to help with putting the cake together and then it was time to decorate and color! They were having much fun in there baking while dad was taking care of me! My party starts at 3pm! I am having a great day Happy Birthday to ME!!
Love Malia

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