Archive for November, 2015

Thanksgiving

Monday, November 30th, 2015

It turned out days before Thanksgiving mom and Maria Jose decided to make the journey with me to San Jose. I wasn’t looking good my color was pale, I was on 02 constantly, and my fever was not going away. So we headed into San Jose and got a hotel for the week. After running a bunch of exams it turns out my C reactive protein test came back super high! 191 when it should be less than 10.. This test looks for inflammation in my body. My white blood cells were super high and my xray of my lungs did not look so hot! Thank goodness I did not have Pneumonia but Bronchitis and my doctor thought it would be okay for me to stay at the hotel and not be admitted to the hospital! I was catheterized as well and we found out not only did I have bronchitis but a UTI as well. That nasty bacteria Klebsiella Pneumoniae was back again. For the bronchitis we started with three days of Rocephin injections.I immediately started to feel better after the first injection and began to smile a bit more! Once we found out what the UTI bacteria was sensitive to in regards to antibiotics we switched it up to Denvar for ten days.

Our Thanksgiving was not dull. First of all it was Maria Jose’s last day with me. :( So it was sad to say our goodbyes. Our dear friend had invited us over to her house for dinner for turkey and all the fixings. We were happy to get out of the hotel and my parents stoked to have a home cooked meal. My dad had come up the night before to spend Thanksgiving with us. My parents were enjoying the company and laughing and talking with friends when my mom noticed that the battery light was on my 02 machine. My dad went to plug it in and when he did the battery would not charge. We tried every electrical outlet in the house but with no luck. It was looking like the cable to charge my battery had decided to stop working on us Thanksgiving night! The next thing you know my parents are scooping me up and we are saying goodbye and thankfully dinner was almost ready and Krystal through together some plates of food for my parents. Out the door we went I did have a car battery charger that at least would maintain my battery and give me 02. So……what do now?? My parents are discussing how we definitely did not want to admit me in the hospital just so that I could have air… So we called Irene, remember her? She was my therapist before MJ. Her grandma used to have a oxygen concentrator that they had loaned me before. We called and it turns out they had given it away. Irene was so helpful and gave us a number to call Hospital Express! At this point in time, me and dad were in the garage at the hotel in the car with it running while mom was calling around trying to find me oxygen. CRAZY!! Mom had her doubts about someone answering at 9pm a cell phone and bringing us an oxygen machine. Guess what that someone did answer. A very nice couple was working that night and unbelievable they had a 02 concentrator in the back of their car! They delivered it to the hotel with in an hour and they also had the number to a nice man who fixed the cable to my portable oxygen concentrator the following day! What luck we have! We ended up buying the concentrator that the people brought to the hotel just to have for a back up in case of emergencies like the one we had Thanksgiving day!

Thanksgiving, it is about GRATEFULNESS…. What am I grateful for? That I did not have to go the hospital that night for just oxygen, that the lovely couple answered, for my parents, grandparents, Maria Jose, Krystal,finding a nice new therapist Natalia, my friends, and my dogs and cat Chupa. This Thanksgiving we won’t forget!
Love Malia

November Rains…..

Monday, November 30th, 2015

November brought us some nice rains. It also brought me another cold and I am continuing to have seizures. I recently had one that is called a startle seizure. It is a new seizure to me. It look like at first that I am laughing and so you wouldn’t think it was a seizure but I can continue to do this for 15 or 20 minutes and it is not normal that I behave like this so we videoed it and sent it to our dear friend Kathy. Remember Kathy? She is the family friend that had a daughter like me who lived to be 31 years old! My mom will ask her first before calling a doctor! Experience goes along way and she agreed it looked like a startle seizure. It doesn’t help either when I am sick or constipated. It brings on more seizures.

We had a friend visit us from Canada, and after the third day that she was here she told us she didn’t feel well and that she had a cold. Sure enough the next week I had a cold. This time with fever and I was needing more 02. It was exhausting being sick again. Between seizures, colds and constipation I am not doing so well… I am not eating well either. I keep having attacks of nauseas and am not able to hold food down well. The decision had been made it was time to head to San Jose. This will be my first trip to San Jose in a long long time for me to see a doctor for being sick… I guess it happens to the best of us! Hoping all of this goes away soon!
Love Malia

Big News!

Monday, November 30th, 2015

October 26th 2015
Today Maria Jose, my PT for the last three years turned in her letter of resignation to my parents. This came as a surprise to our family. We did not know that Maria had plans on leaving us but then we all knew that at some point time it was bound to happen. Maria travelled every weekend to her home town of Cartago. This journey by bus took sometimes 7 to 8 hours. She made the trip every weekend as she saw other patients back in Cartago on the weekends, and of course her boyfriend of many years.

Maria Jose had been working with a patient giving water therapy at a clinic in the city for a few weeks. The administrator of the clinic was eye balling her and ended up stealing her from us. She took the job, and gave us a month notice. It was a hard blow to all. We understood we did, but how do you say goodbye? How do you let go? THREE YEARS of taking care of me, loving me, hugging me, bathing me, playing with me????? I was out of breath…. My MJ won’t be mine anymore. :(

Needless to say there were a lot of sad faces around the house. The month seemed to fly by. We interviewed four different girls for the position. We weren’t impressed. We kept looking. It was difficult too as I was still on oxygen and having to do respiratory therapy everyday so MJ was showing them how not only do you have to do PT work with me but respiratory as well. It really wasnt the greatest situation. I was tired too from being sick. Maria Jose was receiving all the resumes and many many people applied for the job. However once explained exactly what my physical therapist does with me on a daily basis the number of people interested began to dwindle. It takes a very special person you see to be able to work with me. You may ask what does my PT do? Well let me tell you……

MJ would come to work Mon thru Thursday from 10 to 6pm. She bathed me and got me ready for the day, then we would do therapy for a while or arts and crafts, and then it would be lunch time and she would feed me which takes almost 1.5 hours.. After that it was relax time or nap time. Once I woke up we were back at therapy again for another hour. Then it would be time for a sunset stroll or a ride on my horse! After that it is pajamas,and teeth brushing. That is what my PT is supposed to do with me everyday but on some occasions it is respiratory therapy, poop therapy, massage therapy and more. My therapist ends up learning much from me. Maria Jose, came here three years ago as a physical therapist, but she left as a equine therapist, swim therapist,Bobath therapist, respiratory therapist, and much more….. Will she be prepared for anything when she has her own child? Yes she will. She will know how to face trying and stressful circumstances with strength and patience. It makes me happy knowing that I gave her insight and knowledge while working with me.

I will always hold a special place in my heart for her and I wish her only the very very best. Thanks MJ for loving me the way you do, for believing in me and for always treating me like any other kid. You have no idea how much that meant to me.

Malia

Grand parents visit!

Monday, November 30th, 2015

My Grandpa and Gammy came to visit me. It has been almost three years since they have been to Costa Rica to see me! They have not seen my new house yet! It was so great to have them here! I did catch a cold for the first time in years while they were here but we are able to treat at home and did not have to make a move to San Jose thank goodness! I had to be on 02 for a few days, but with tylenol and lots of respiratory therapy I was able to shake the cold on my own and was feeling good again in about ten days!

We celebrated my grandpa’s birthday while he was here! He turned 78 years old! We had a special dinner for him and Gammy and had lots of fun listening to old music! He loves Ranchero and Marriachi music! He can still cut a rug too! He and mom danced together in the kitchen! It was fun to watch them shake a groove! Grandpa still got it in him! I wish they could have stayed longer but was so happy they came!
Love Malia

October flew by……..

Monday, November 30th, 2015

October finally brought us some rain. It has been a very dry winter with hardly no rains at all so the water was welcomed. October also brought many seizures. They have started up again and I don’t like them at all nor do my parents. :( It turns out that Charlotte’s web the oil I have been using for two years to stop my seizures has changed. CW can be shipped in all 50 states in the USA. The Stanley Brother’s corporation Realm of Caring lowered the amount of THC to from 0.3% to 0.1% and due to this minor change I have begun to have seizures more frequently.. Many other friends of mine have experienced the same problem. :(
Seizures are terribly exhausting mentally and physically and I am having about four to five a day. I have started a new oil and am hoping it helps. Besides from the nasty seizures bugging me I have been pretty good except for at the end of the month I spiked a fever… Hoping it is nothing.
Love Malia