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