Malia Moore

Tuesday  February  14th Happy Valentine’s Day!

After such a great weekend it was time for us to begin our ritual of packing up everything but the kitchen sink and head to San Jose. We have to go in because I have to have ANOTHER urine culture. Every time I finish taking my antibiotics I have to test to make sure the bacteria is completely gone. We as well have interviews lined up for a new therapist for me hopefully we find the right one!  We are going in on Tuesday and hope to come home on Friday. We  are also meeting with a urologist. Hopefully he can shed some light on why I have so many urinary tract infections.

We arrived to San Jose around 3pm. We went straight to the hotel as our first interview for my therapist was at 4pm. Anna came to the hotel to work out with me. She did a good job. Mom lined up four interviews for the week. Tomorrow we meet Irene. First thing Tuesday morning we went to CIMA so I could get my urine tested. It takes three days to find out if I am 100% clean. Of course right when I got to the hospital and Carmen was ready to catheterize me I tinkled! So Mom and Dad filled me up with some water and we came back 20 minutes later! Just as Carmen was cleaning me I tinkled again but she caught it in mid stream so I pulled one over on them and did not have to get catheterized this time! Yeah for  me!!

My appointment with Irene was at 11am and we made it back just in time! Irene showed up  early and brought her own mini gym with her to the hotel. She even brought a work out ball. We got straight to the business at hand. She started talking to me  and stretching and we must have worked out close to an hour. I felt very comfortable with Irene. I could sense her confidence in handling me. We had a good work out together.

Later that afternoon we met with urologist, Dr. Konrad Jiminez. Seems that all this time I have been taking prophylactics that it really has not been the best decision for me. Many other kids with Liss take them and they can help prevent urinary tract infections but it never seems to make a difference with me. In the end it only feeds the enemy rather than deter it. So he suggested to take me off them and to only treat the urinary tract infections with symptoms. Continuing to use antibiotics all the time will only cause the germs to become more resistant to the drugs and that eventually even Cryptonite would not help to kill it. He suggested that I take a gamma renal test. You might wonder what that is we surely did not know! It is a test where I am injected with a teenie bit of radiation. The radiation goes specifically to my kidneys and they are lit up like a neon light. This test is to see if I have had any scarring on my kidneys since I have had so many urinary tract infections. I am scheduled to do this on Wednesday.

Wednesday morning we went to CIMA to take the test, the nurse found my vein on the first try and I was so happy for her and me! In went the radiation. My parents were a bit concerned thinking that they were putting radiation into my bloodstream but the tech explained to my parents that an xray had ten times more radiation then the small amount they were giving me to see my kidneys on the big screen! We  had to wait three hours before coming back to the hospital to do the imaging. I also could not have anything to eat and I was suppose to be sleepy and not move or they would have to sedate me.

At 1:30 we came back I would have to say I was not very sleepy but we decided to start the process and I was laid down under this big machine and the technician was staring at the computer at my kidneys. Mom and dad were by my side and then the tech left the room and came back with another girl. The two of them were whispering when mom said  what is the matter? Guess what???? In 1 in 100 cases the radiation does not go straight to the kidneys instead all the other organs in my body were lit up and not my kidneys. We could not do the test. Dad had to leave the room.  Mom was not happy either. Are plans were to leave on Friday to go home. The technician said can you come back on Monday to redo the test? We were like what???? NO WE CAN NOT! We have already been here a week. I could not do the test the following day as to be injected with radiation again you have to wait at least 36 hours. The tech offered to come back in on Saturday to redo the test. Grumbling we all agreed that we would do it Saturday.

Mom called the hotel and guess what all the rooms were totally booked!   We called our friend Krystal and thankfully she said to come on over that we could stay at her house.  Mom was telling our  friend Diego about what happened and he said we should all load up and take me to Vegas with the kind of odds I run we could probably win a million!

On Friday we packed up everything at the hotel and headed to Krystal’s. Mom and Dad were going to cook Krystal a yummy dinner tonight for being so kind to open her home up to us. We come with a lot of stuff!!!

As for the therapists, two of the girls did not show up at the hotel for the interview nor did they call to cancel. Mom was very disappointed as she had  9 girls interested in the position.  It was probably for the best though as we surely would not want either of those girls working with me if not mature and responsible enough to call and cancel the interview. It really did not matter anyway as we had our eye on Irene! I really liked her! Mom and dad talked about it and decided to offer Irene the position. She accepted and is following us home on Saturday to scope out where she will be living. She will start her new job on March 1st. Yeah! I am sure we are going to become great friends.

Saturday morning we rushed out of the house to get to CIMA by  7:30am. The technician who put the radiation in my arm did a great job. It was quick and easy and I only cried for a few seconds. We headed back to Krystal’s and packed up. We had to be back at CIMA at 11am to do the test.  For some reason I am very sleepy today and when we headed back for my appointment mom and dad  just knew that I was going to be awake during the entire test! Well I did not. I slept through the entire 45 minutes. The exam was a success! I passed with flying colors the radiation went to my kidneys so they were lit up like a Christmas tree and I did not have any scars on my kidneys from prior infections. Woo hoo time to head home! Yeah!

We left the hospital at noon and arrived home at 5pm. It was so great to be home although it is much hotter here. Irene and her boyfriend Javier helped us unload the car and then we all sat out in the garden to watch the sunset. There is nothing better than a Delicias sunset. Gosh it is good to be home again.

Love Malia xo

On Thursday Maria came to play and hang out with me. More so hang out with me as I did not do too much exercising today mainly stretching. I am still on the road to mending, but I am feeling much much better. Mom called Doris, the girl mom interviewed before I became ill and she is coming out on Tuesday to work out with. I am glad it is the weekend as I am ready to just catch up on my sleep and relax a bit.

On Sunday a man named Viktoras came over to meet me. He wants to see if he can help me with my diet and overall well being. My dad has made some beautiful gardens for him and they began to talk about me and he suggested that he might be able to help. We are no longer seeing Shelbe the other nutritionist so my dad and mom were happy that Viktoras wanted to come and meet me. He was very interesting and had many great suggestions for me. We started me on sauerkraut juice and enzymes added to my food. Sauerkraut juice has some many wonderful benefits. It is loaded with antioxidants, and helps with the gastro tract, digestion and is a mild laxative as well! I am going to give it a shot and see how well I do on it. Mom is giving me Whey as well from the yogurt  cheese she makes.I am getting a new menu in the next week so will be interesting to see all that it entails!

Doris came out on Tuesday and did a great job. She was very confident and has experience. She handled me very well. I was happy with her style.  We have received many calls for the position of being my therapist. We are interviewing 6 in San Jose. I just know we will pick the right one however I think it will be very hard for someone to fill Sofia’s shoes but we are going to try!!!  Hopefully I will have a new therapist really soon.

The rest of the week I worked and played with Maria.  I had a good week and am feeling like myself again.

Today we went to our friend’s house Piti and Miguel.   We hung out by the pool all day. I napped for awhile listening to the waterfall in the pool than later we went swimming and I had so much fun. I swam for over an hour and was moving all around like a little fish! I was kicking and splashing around! It was awesome! Everyone came to swim with me! Miguel, Maria, and Piti! We had such a great time. After I got out of the pool I hung out on the lounge chair in my chair and had a great time hanging out with Sarah and Dad A little girl younger than me was there and she was so interested in me. She wanted to give me her chips! She touched my face and I touched her. I love other kids. It was a beautiful day….. Tons of fun had by all my kinda way to spend a Sunday!

Love Malia xoxox

January 29th 2012

Around midnight I woke up crying. I could  not get comfortable. Mom and dad had moved me  into bed with  them and were patting me and talking to me trying to calm me down. I would go to sleep for maybe 20 minutes than wake up and cry hysterically for 30minutes. I did not feel good. Mom took my temperature and it was normal but she gave me some Tylenol anyway just in case I was hurting somewhere. My parents have to do a lot of guesswork with me since I can not tell them exactly where it is that I am hurting.  Mom and I ended up in the rocking chair with me falling asleep over her shoulder. She pats me in just the right way and I finally fell back to sleep but it was  not a deep sleep. Around 4am I started to cry again and mom touched my back and it was on fire. I was so hot! Mom took my temperature and it was 102. Uh oh, time to go to San Jose. My parents do not waste a minute thinking about what to do when I have a temperature like that we know we have to go to the city.

This was not the best timing for me to get sick. My cousin Brent was flying into Tambor today at 8am. It is his first time here to visit us and he does not speak Spanish. Dad would not be able to go with us as he had to pick up Brent. Mom knew who she would call our dear friend Karen. Fortunately for us she is here for the next 4 months with her husband George. Mom called and woke Karen up at 5:30 am. Karen was obviously sleeping and a bit groggy so mom explained to Karen she needed her help and asked her to go in with us to San Jose. Karen arrived here at 7am and we headed out for the ferry at 7:30am. It was so very kind and sweet of her to come with us, as she had friends flying in as well to visit them that day.

We went straight to CIMA and did our routine investigations, urine test, culture, and blood. Sure enough my urine exam came back positive and my white blood cells highs. I had another urinary tract infection! I am thinking are you kidding me? I just had one a month ago. Why is this? I take prophylactic antibiotics daily and yet I still get these infections. Why? We have ran every test out there and yet nothing shows up or gives proof that I have a valid reason for getting these infections. Mom cleans down there obsessively. The only thing anyone can figure is that since I am not moving around and working all my muscles that maybe bacteria is more abundant down there.

Dr. Zuniga decided not to admit me to the hospital but told us to go to the hotel and stay around for a few days. My fever kept coming back, for two days I had temps of 102. Mom was scared and I freaked her and Karen out a few times by holding my breath and going blue for a few seconds. I always was worse at night. I would start to tremble and get chills right before my fever would spike. I was having difficulty breathing as well when I started to get my fever.  I was not going to the bathroom regularly and was holding it in as it hurt too bad to pee. I sure hope these antibiotics take effect soon as I hate feeling like this.

Sofia, her mom, and Johnny came by to see me. They arrived right when I was beginning to tremble. I was not doing so well. We did not have much time to visit as I felt terrible. Twice I went blue not for long but enough to scare my mom and Karen! Seizures, fever, and infection do not blend well at all! Dra. Castro does not like that my fever is still high so has asked me to come in to see her so I can get a intramuscular shot in the bootie to hopefully speed up killing this bacteria. It is Ecoli. I always get Ecoli. Some of you might think how does she get Ecoli?  It is not the Ecoli from food but the Ecoli that is found in 90% of all urinary tract infections. I hope we can figure something out soon! I have been feeling so good except for these urinary tract infections!

We finally headed home on late Wednesday afternoon. I was ready to go home but was exhausted and we had a long drive ahead of us. Auntie Karen sat in the back with me and gave me my lunch. I was sleeping so deeply and with my mouth wide open that when mom looked in the review view mirror she says to Karen “is Malia breathing”? Karen looks at me and then mom says it again….. Then the next thing you know Karen shakes my chest and I wake right up startled looking at them both like why in the world are you waking me from this great sleep? Geez, ladies.

We got home by sunset. We had a grand welcome party!  Dad, Selva, Indio George and the friends that had flown in the day we left to see Karen, and of course I got to meet my cousin Brent for the first time! I was so glad to be back home. Time to recover  and then it is back to San Jose to take another urine culture to make sure the bacteria is totally gone.

Whew, what a long week!

Love Malia

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