Archive for August, 2011

August 23rd – 28th

Monday, August 29th, 2011

I had a good week of working out with Sofia. I did not start the week of with  a ton of desire to work out but by the end of the week I was doing very well and Sofia was very pleased with my progress. Mondays for me are like everyone else, who wants to go to work on Monday?? Sarah came to visit me again this Monday and she wrote me the nicest comment here in my blog. I really like her coming by and visiting me!

I had a great weekend with my parents. Mom and dad went to Sarah’s parents house for dinner on Saturday and Sofia stayed and watched me! I am glad mom and dad were able to go out and have some fun, it has been almost a year  since they have gone anywhere without me. I enjoy Sofia’s company and was in bed early on Saturday. On Sunday we hung out in the hammocks and watched Rango. It has been quite stormy and windy here. We have one week here before we start heading North to Texas. I hear the heat is unbearable there! Sure do hope it cools down by the time we get there. I am looking forward to going home and visiting all my friends and family. I cant wait for my party! The Shriner Clowns are performing for me! Yeah! :)

Malia

The Moore’s!

Monday, August 15th, 2011

We love Sundays!

Dad borrowing my glasses!

Monday, August 15th, 2011

Holding mom’s hand!

Monday, August 15th, 2011

Who is going to let go first?

My new special tomato chair!

Monday, August 15th, 2011

Back at it!

Monday, August 15th, 2011

We have been home for a week now since San Jose. It always takes me a while to get my groove back but I am doing good again. Sofia pushes me really hard and does not let me cry my way out of working out. She is a great therapist and friend. We have alot of fun together out at the platform. Many animals come to visit us. I especially like the squirrels, sometimes they throw things at us. I also have two new friends coming to see me. Sarah and Rachid.  They have come to see me workout three times and it has been great. They cheer me along and help Sofia by handing her things and putting up the toys when we are done. It really makes my day to see them out at the platform. They are very sweet to come and see me. They are 8 and 11 years old so I can imagine they might have better things to do than come watch me workout but they do and it is great!

We just bought our plane tickets for my party. I am looking forward to going home and seeing my friends and family. My parents are a little anxious about traveling with me but I now I am going to be just fine!

Love Malia

Doctors and more doctors!

Monday, August 15th, 2011

August 1 2011

Day 1

We are headed into San Jose to take another sample of my urine to make sure the bacteria has completely gone away. We also have scheduled to see my neurologist, ophthalmologist, pulmonologist, gastroenterologist, and to do testing to make sure my kidneys and bladder are functioning correctly. We arrived to San Jose around 2 pm, and went straight to CIMA. We went to emergencies to have me catheterized  so we could start the process of the culture on my urine. The nurse there, was not the usual one who catheterizes me and quite frankly did a terrible job. She stuck me 6 times. It was very uncomfortable and I was very unhappy about this. Once she got in she then let the hose loose and pee went all over the gurney and only a few little drops of pee got in the jar. Fortunately, the lab does not need a lot to do the testing. My parents were not the happiest about the procedure this time. Where was Carmen? She always does a great job!

We then left for the hotel to relax a little bit before going to my neuro appointment at 5pm. Dr. Luna was glad to see me. My parents had sent him a video of my latest seizures and he was actually happy with them. They are no longer infantile spasms but partial seizures. This means that only one part of the brain is being affected and the symptoms I have depend on which part of the brain the seizure is happening in. Dr. Luna explained that infantile spasms  would shut down the brain whereas these new seizures are only affecting a part of the brain and not all. So I guess if your neuro is satisfied with these seizures so should I. Obviously the goal is to not have any at all, but then that is nearly impossible since my brain is almost completely smooth.

Day 2

Today was a holiday in Costa Rica, so  I did not have any Dr. appointments. Sofia came to the hotel and we worked out together while my mom and dad did some shopping.

Day  3

10:30am I had to go in to be catheterized once again. This time I was taken to the x ray room where a doctor would watch me pee while being xrayed. They filled my bladder up with a dye solution then watched on the big screen. They were wanting to see if I was refluxing my urine into my kidneys because if I was this would cause urinary tract infections and can be very serious. Fortunately, I  am not refluxing and the doctor who catheterized me was a pro and did it on the first try! Thank goodness! We have now ruled out that I am refluxing and retaining urine in my bladder. We decided that I was not retaining urine in my bladder as we catheterized me again just after I had urinated to make sure I did not leave any urine in my bladder. The docs are scratching their heads as to why I am getting so many urinary tract infections when everything is working properly.

11:30 We went to see the Ophthalmologist. I had my eyes dilated and tested for tracking and the doc said I was tracking well but that I needed to keep the patch on my good eye in order to work my lazy eye. She augmented my glassed a little and now I am seeing even better than before!

12:30 Break for lunch

3:45 pm Met with the Pulmonologist for the first time. Turns out he was the same Doctor that attended to me when I was in ICU at Children’s hospital. He is a very nice man and my parents were very happy with him as well. We talked about my upcoming plane ride to Texas and whether or not he thought my lungs were up for the trip. He thought my lungs looked pretty good but is checking into seeing whether or not they can test me at 19% oxygen before leaving on the plane as that is what the O2 is once we are in the air. There is also the possibility that I might get inflight oxygen for the ride to Texas. We have not decided on that yet. We did not get out of that appointment till 5pm and are now headed to the hotel for dinner and rest! What a long day!

Day 4

10am Met with Geovanny my Physical Therapist in San Jose. We worked out for over an hour. Geovanny was happy with my progression since the last time he saw me in April . He is also making me  a stand to put my new chair on so that I can be at the same height at the dinner table. He is quite creative and very nice. We had a good workout together.

3:45 Met with my Gastroenterologist to change my gtube. Sofia came along with us and videotaped it as my mom was the one who actually changed the button. However since we only change it once every six months mom and dad have a hard time remembering all the steps so Sofia got in on tape and now we wont have to come to the doctor to do it. It is pretty easy and it does not hurt me at all. My mom did a great job! We arrived to the hotel at 6pm just in time for dinner and bed. We are headed home tomorrow on the 2pm ferry. We are all looking forward to getting back home.

Whew, I am a tired little girl. Besides from seeing doctors all week the rode trip is always tiring. I am not complaining though I am just ready to be back in my butterfly bed.

Love

Malia