Archive for November, 2011

News from Sofia

Saturday, November 19th, 2011

November 7th, 2011

Sofia and I worked out at the platform this morning. I did fairly well for a Monday morning. We came back to the house for lunch and mom and Sofia were talking about Christmas plans and when Sofia would be going to San Jose to spend Christmas with her family.  Plans were made and all things were well.  Mom then asked Sofia  that when she was ready to leave us one day that would she give my mom and dad two months notice to find someone else. The next thing you know Sofia is telling my mom that she will be leaving in December and will not  be coming back after Christmas. Sofia has decided to go back to school and study Nanotechnology. Classes start after the new year.

The look on my mom’s face was utter shock… I could not believe what I was hearing either. We knew Sofia would not stay with us forever that one day she would leave but we were not expecting it to be so soon. Mom and I were very sad to hear the news. My parents trust Sofia and well Sofia and I have become very good friends. She never stops talking to me, we make up names of all the different animals at the platform together, we sing songs, read books, she massages me, well I could go on forever. We are really close and I am very sad to hear she is leaving. More than anything I felt really sad for my mom, I could see her heart was heavy. Her last day will be December 16th.

After the shock wore off mom got on the phone and called Daniella. Remember her? She came on board after Sabrina left us. She is still studying right now and will be graduating in May with her Physical Therapy degree. Daniella will be continuing my therapy  after Sofia leaves as she has two weeks off from school for vacation. It will be good to see her again.

Mom later called Itzi  she was one of the girls we interviewed when we were interviewing Sofia.  We liked Itzi and it turns out that she is not working in a clinic but making house calls to patients in San Jose. She is interested in the job.  Her and her parents will be coming out to look at where we live and see if she likes it out here in the jungle.  They are coming November  19th.

So that was the big news of the week. We are all adjusting to it and are happy for Sofia. It is great that she wants to continue her education. We are sure going to miss her though.

Love Malia

A little beach time……

Saturday, November 19th, 2011

November  6th, 2011

After getting settled back into being home we woke up to a a beautiful Sunday morning. It has been a long time since we have been down to the beach so we decided to enjoy Sunday morning  looking at the waves. We loaded up all our beach stuff, Sofia, and the dogs and headed down.  The waves were awesome. I was in my jogging stroller taking it all in. I love to feel the ocean breeze in my hair and I can take the best naps ever down at the beach. That is exactly what I did. I closed my eyes and dreamed of swimming in those waves, playing in the sand and  running down the beach with my dogs. You see in my dreams I can do everything. What a beautiful day it was.

Love Malia

Under pressure!

Monday, November 14th, 2011

November 3rd,

We are heading back home today. We are planning on taking the 2pm ferry which will get us home around 5pm. We had so many stops this week and doctors appointments the one thing that kept getting pushed down on the list was the urine sample . I have to check every month  to make sure I am clear from any urinary tract infections.  Usually I am catheterized for this but Dr. Castro was happy with my blood work and told my parents just to take a sample from a pee bag. Anything and I mean anything is better than being catheterized.

Mom and dad had an appointment downtown at 9:30am the goal was to be on the road no later than noon to make it to the ferry on time. Sofia showed up at the hotel at 9am and mom and dad were close to walking out the door. Sofia has been with mom a bunch of times when they have tried to obtain pee from me. It can be quite tricky. You have to have eagle eyes and make sure you don’t miss the golden opportunity! Ha ! Ha! So Sofia walks in the door and mom says “Sofia I trust you can do this one on your own” if we get a sample great if not well it will just have to be until next month.   Sofia accepts the challenge with no problem! Imagine having super glue stuck to you down there with a little bag hoping that your sample actually makes it in the bag! Not so easy! Anyway, mom and dad came back at 11am and would you believe it I had just peed for Miss Sofia and she caught a great sample! Yeah!! Good Job Sofia!  Mom and dad were impressed with us both!

Dad packed up the car, and out the door we went…. A quick stop by CIMA to drop off the sample and then off we go to catch the ferry. Everything went quite smoothly. We were  at the ferry a half hour before it took off and ran into our friends Karen and Hilary and Stephanie, Jim and Naia. It was great to see everybody. I was having my lunch so we always stay in the car and everyone else goes up top. I kinda like it in the car, a nice breeze is always blowing through the window and I can look out at the ocean.

Mom called home to check in and spoke with Bismark. He had some news for us. Luisa was cleaning behind my bed today and when she removed a photo of my mom and grandpa there staring right behind the photo was a big snake! Yikes! That nearly gave poor Luisa a heart attack. She yelled for uncle Bismark and he came in and chopped his head off. Can you imagine a snake sleeping behind me?  Mom was a little shook up after that phone call. Needless to say guess where I slept that night? I don’t even have to tell you as you know it was not in my bed!

I will tell ya though I will take snakes behind my bed, howling monkeys, and yapping parrots any day over four to five doctors appointments, urine samples and blood tests. I live out in the jungle and I like it out there! It is good to be home again!

Buenos Noches,


Docs all day!

Sunday, November 13th, 2011

November 2nd,

I did really well at the dentist yesterday. I did not love it but I also did  not scream bloody murder when Dr. Mermelstein was filing down my teeth. All in all it was a good visit. I am not so scared of him anymore and since mom brushes my teeth daily I have kinda become used to having my mouth touched. I did not do so well in therapy with Geovanny as the vaccine has made me feel really tired and with not very much energy. I promised him I would do better next time during workout!

I as well had to swing by the Gastroenterologist office to see Dr. Jimenez. For some reason where my g tube is the site is very red around it. Turns out there was not enough water in the  balloon so we had to fill it back up. It has been leaking and the gastric acids were burning my tummy around the site. I have some cream to put on it and it feels much better now.

The appointment with Dr. Luna, my neurologist , went well.  He confirmed what we had believed. I was having  absent seizures. He explained it very well. He decided that it was not a pulmonary issue since I was turning blue so fast. Normally a person can hold there breath  for twenty or thirty seconds before even to begin to turn blue. Since I was turning blue almost immediately when I held my breath Dr. Luna suggested it was cerebral and not pulmonary.  It is like a short circuit in the brain that constricts the capillaries. Dr. Luna then listened to my heart and wanted to rule out that is was not cardiovascular as well so suggested I have a cardiogram. Dr.Guitterrez my cardiologist’s office is right across the street and thankfully he was kind enough to squeeze us in before his other patients. It was time for another cardiogram anyway. I have been seeing Dr. Gutierrez since I was six days old. One of my valves do not open and close properly but my cardiologist is not too concerned about it at the moment. If I were running and jumping I would have to have a surgery to fix this problem but since my activity level is low we are going to simply monitor the situation yearly. So after the visit we all agreed it was a type of seizure, more than likely absent.

Since I am no longer having West Syndrome, Infantile Spasms Dr. Luna wants to take me off of Vigabartin. I have been on this for three years and it can affect my vision in the long run so I am happy to be going off it. We are going to try another seizure medication called Trileptal. I cant just stop taking Sabril so we are on a month program of weaing me off of it. The goal is to hopefully have me taking only one seizure medication. Dr. Luna wants to take me off Valporic Acid as well but we can only do one drug at a time in order to know what is working and what is not working. I can only hope the Trileptal works and keeps my seizures at bay. I have not had a breath holding seizure or any other type for that matter since last Sunday. So that is good news!!!

At 5pm we headed back to the hotel as Maureen my phelbotomist was coming to draw blood from me at 6pm. We are having to test again for my valporic acid levels. Last month they were high and this drug can severely affect my liver so it is important to make sure the levels are within a therapeutic range. Mom drove Maureen home after she drew my blood and dropped off the sample at CIMA.

Tomorrow we are leaving to go back home. I can’t wait to get back there! San Jose seriously wears me out!

Love Malia


Saturday, November 12th, 2011

My Halloween does not consist of me dressing up and trick or treating. Although I was sporting a really cute bright orange Halloween top! We are headed to San Jose  to see my doctors. We left the house at 9:30am and my first appointment is at 4pm. I have to go see Dr. Castro for a vaccine shot as I am due and this one covers  chest infections and meningitis.

We arrived to the hotel first and unpacked everything in the car and then headed straight to Cima to see Dr. Castro. I did not cry when I got my shot I just arched my back and doubled my fists and gave Dr. Castro a very mean look. Mom and dad are prepared for me to get a fever so they are giving me Tylenol every six hours. I have to be careful with getting a fever as it can cause me to have a seizure. Thankfully I have not held my breath today.Vaccines always make me tired and groggy so we went straight to the hotel after CIMA so I could rest. I had a pretty good night. I never do well in strange places but I am doing good.

Tomorrow we go to see Geovanny my other physical therapist as he is making a stand for my new chair to sit on. My parents want me to be at the same height as them at the kitchen table so that I can feel included at the table. I cant wait to get it!

My parents are also taking me to see the dentist. The other day I bit my lip so hard a pool of blood came out of my mouth and onto the bed. Sofia called my mom to come upstairs to show her the blood. At first neither one of them knew where the blood was coming from. Mom retrieved a flash light and looked into my mouth and sure enough I had bit my lip hard.

Since I do not eat by my mouth my teeth do not get filed down and my canine teeth are like mini vampire teeth. So we are going to see the dentist. I do not like anyone touching my mouth. Mom already warned my dad and Sofia that she would not be in the room as she does not like dentists either. So dad and Sofia are going to cheer me along and try and keep me calm. I hope I can behave!

Love Malia

Turning blue…..

Saturday, November 12th, 2011

October 28th

Today during lunch I all of a sudden just stopped breathing and turned blue within seconds. My mom yelled at me and I caught my breath and started to breath again. At first mom did not think too much of it as I have done this once or twice before. The next day I did it three more times and still keeping turning blue. I continued to hold my breath for three days and am making my parents very nervous. I only hold my breath for 5 or 7 seconds but my face and lips go blue. My parents think it is a new type of seizure. They call them absent seizures. Mom asked on our support group other moms for advice and they seem to agree it is a new type of seizure. Thank goodness on Halloween we are heading into San Jose for a routine checkup with my doctor and obviously a visit to my Neurologist Dr. Luna. Sure hope this goes away soon.

Love malia

My new diet

Saturday, November 12th, 2011

October 26th, 2011

I started my new diet on October 19th it consists of Fresh goat milk that sweet Luisa brings to me daily from her goats. I also take 3 egg yolks at night and am eating chicken mixed with carrots and broth. Everything of course is made from scratch. One day mom and Luisa spent the entire day cooking up my meals blending them and freezing them so I would have plenty for the next week!  We have our own hens so we get fresh eggs daily. Pediasure is no longer in my diet. The nutritionist said it had many chemicals and sugar. I am doing really well on this diet and the egg yolks and fresh goat milk are settling well in my tummy . I still continue to take my Cod Liver oil daily as well as Cataplex E2 vitamin supplements.

I feel better and am over my cold. I am more alert, happier and smiling lots. I think this new change has been good for me.

Love Malia

Rain and more rain!

Saturday, November 12th, 2011

October 7th 2011 thru October 24th

My first day of workout and I was not able to go out to my platform as it was raining really hard. It rained for 18 days straight. Not once did Sofia and I go out to the platform. It is cold and windy and most the time we just stay upstairs as it is too cold and windy downstairs in our kitchen.

After so much rain, we are all looking forward to some sunshine. My parents have been making a different soup each night. It is cold here compared to the heat we just came from in Texas.

I am having a hard time sleeping. For three straight nights I could not sleep. I am not sleeping during the day  much either. My parents have such a hard time when I can’t  sleep and am crying. I have a hard time because I want to tell them what is wrong but I can’t. It is so frustrating for everyone. I am not wanting to work out that much either as I am irritable and crabby!

My mom called the new nutritionist and she said it would probably be another of couple of days before I began to sleep again.I have totally changed my diet and we are not sure if this is causing me restlessness.  Two more nights I did not sleep well but after that I began to sleep like I normally do which is pretty much all through the night. Everyone was relieved including myself to finally get some rest.

When the sun finally came out everyone was so happy. It felt so good to leave the house and get back out at my platform. Even though it was raining I still worked out twice a day upstairs in our room. I am doing really well considering how sick I was. I still take oxygen some times during the day and at night. Sofia says she is really impressed on how well I am doing considering I had a pretty big break in Texas from working out and the fact that I was sick. I think the new diet is helping  me.

Love Malia

San Jose

Saturday, November 12th, 2011

October 2nd 2011

We woke up to a sunny morning. Our favorite day of the week. I am still coughing a lot and not feeling a 100%. Our plan is to go see my pediatrician on Monday and make sure my blood work is okay. I am still taking antibiotics since we were never sure what exactly it was that got a hold of me in Texas.  My parents are pretty sure it is a virus. We hung out at the hotel and rested up from our long  journey home.

The following morning we went to CIMA. Dr. Castro, says from looking at my blood work that it is a virus and even though I should not be taking antibiotics I have to finish the course and stay on them for another week. We left on Tuesday to go home. I am still taking in oxygen because my chest and lungs are congested. The trip home went smoothly we arrived home at 5pm. It was so good to be home. I finally get to sleep in my bed, well not really as I have become accustomed to sleeping with my mom and dad again but I know it will not be long before I am back in my bed. I always like sleeping with them when I do not feel good as they make me feel safe.

When we were in San Jose , we called Sofia my physical therapist, but unfortunately she as well caught a nasty cold and is having to recuperate before coming back to Delicias to work with me.

When we were in Texas, my mom talked to an alternative doctor and she suggested to my parents to cut out Pediasure and I have recently started taking Super D omega 3 Cod Liver oil. It seems to be doing me some good as I feel like I am getting better faster.

Home is where the heart is and we are all so glad to be here. Sofia came back to work on Friday and we started our workout routine slowly but surely as we are both just getting better. I am ready for next week so I can get my routine back and hopefully will start feeling better soon!

Love Malia