First off let me say a belated MERRY CHRISTMAS to everyone. I hope your celebration was pleasant and uneventful from CM/SM.
As you all might know or not know, I am currently receiving in home services with a visiting nurse and home bound PT and OT services. Joy o joy for all of these people invading my home. Anyhow we received a diagnosis from the doctors regarding my tremor and loss of memory episodes which are recurring more frequently. The ER doctors say it is non epileptic seizures causing the tremors to increase and they still can not explain why I can not recall these episodes after they start. We get to the neurologist in a couple of weeks and see what happens from there. One plan it that they want to out me in a 7-10 video monitoring at the hospital and go from there. I personally do not think that it wil reveal anything due to I will be in a different environment and not having some of the things that I do at home, like feeding and the occasional diaper change on Alyssa, doing small things with Emma (playing wii, reading books, stories, etc), and helping Katrina do things with her school work and reassuring her that I am not going to die (she is so worried about that and it is a struggle to keep reassuring her that it will not happen to her as well). Chris is telling me that the episodes are coming more frequently but do nmot always result in a memory loss as to the whole event. I have to agree with her on most just because I do not remember and she is the one picking up the pieces whether the episode lasted 15 minutes to hours.
It bums me out that I had a major episode today and the good thing though is I felt it coming on a little bit. It started with me not being able to walk from the dining room rocking chair to my recline (less than 10 feet) but I did not have the strength to get up and the tremors were really bad. I finally was able to get the strength to get in my chair and start eating dinner. Well then I started choking opn dinner and shortly after that was the choking episodes again this time on water. After that the tremors/seizure took over and all I remember is that I was cold, even though I apparently had three to four blankets on me + a bed comforter. then From what I was told the seizure kept going until I finally either A) passed out or B) I fell asleep. I did come to or wake up hours later after I removed the covers. She did get some of it on film as with prior episodes so we can show the NL in a couple of weeks and also show the home nurse when she comes tomorrow or today as I do not know what time it is. Either way, it is a bum deal. I feel like I am being a test dummy cause the docs do not undertand what is happening and are trying to tie it in with my CM and SM when I am not sure that it is related. It is just so frustrating like many of the other issues we as Chiarians suffer.
Some good news though too:
Alyssa is starting to walk and doing pretty good at it. she has some issue when changing flooring (rug to wood, wood to lineoulm, etc...). But she is a trooper as she is slowly starting to form and say words. Right now you can figure out what she is saying if you listen closely . She may be off a syllable or sounds but she gets her point across.
Miss Emma just keeps going she is doing well in age apropriate with hand writing and reading. MAth appears to be her strong point and it is getting harder and harder to trick her out of something cause she figures it out.
Katrina is starting to scare me as she is worryiong more and more about me andsome of it shows. We are engaging into a battle with one of her teachers due to AR or Accelerated Reader program. WE have always taught her to read for enjoyment no matter hopw hard or easy (when she reads to Emma and Alyssa) the book it. We teach her reading is fun and should be enjoyed. Well the bone headed teacher (who thinks she is the greatest thing to happen to education since the beginning of time because she has all the certifications and degrees - blah, blah blah)tells Trina that she has to read only certain books that fall within her AR level which limits what she likes toi read...FOr example she has read all but the last book of the harry potter series 2 times over the past couple on months since school began. OR her animal books, cause she wants to be a vet and will read anything about animals. The bonehead teacher seems to be the worst class, but we encourage her to do her best and in a few months either a she will be rid of that teacher due to going to 6th grade or madame bonehead and I will have a discussion and I will challenge her to a teaching duel where I can prove that I am a better teacher than her and I only have 1 credential. I would have to inform her that I taught where kids did not want to learn and there was the possibility of being attacked, (I taught juvenile delinquents or to be PC court adjudicated youth) where she would not survive.
anyhow enough rambling and apologies for making this so long. Take care my friends and be safe with the holiday season upon us and enjoy yourselves. Wishing all of you a happy, safe and improved new year.
Mike