Well... Since the Zonegran was increased, I do see a "slight" decrease in seizures. Counting the definite obvious seizures that were 30 seconds or longer... He has had only 6 seizures in 12 days. Seemed like a lot until I looked at the 12 days before the increase... in which he had 8 definite 30+ second seizures. So... 14 Seizures in 29 days. We have seen much better... but we have seen worse too, so I will choose to be happy about that! May need to bump it up again to see a "honeymoon phase" as they call it... We will meet with the Pediatric Neurologist at Children's again on Thursday next week. We will talk about the EEG that was done at the end of November, his MRI and what has changed. We will hopefully get to discuss genetic testing, if there is still any possibility that Brynnon's condition is a genetic defect. We will also be discussing "other options" that couldn't be discussed over the phone. House has been pretty busy the last few weeks...
This Momma is burnt out with lack of sleep, stress from many sources and Brynnon's seizures on top. I will be taking some time to get the house organized, get my life in order spiritually as well as physically and focus on the important things starting now. I have been thinking about Brynn and his future a lot. Realizing that I am going to have to take care of him as long as possible and have everything in place for someone great to take over should my life's purpose be complete. Obviously, I need to drop some weight, eat healthier, rest more and get rid of some of the stress in my life. I intend to make this the year to do just that. I mean it's bad enough that I am 40 with a 1 year old! I will turn 62 just days after Miss Abigail Sariah turns 21, geeezzzeee.... I quit the biggest addiction I ever had just before my 40th birthday in July, smoking. I have gained almost 20 pounds in doing so though, and it's not like I was skinny before! Cut calories and exercise I must... Unless I can cut corners and do what seems to be the in thing now and go have gastric bypass! Which I could not afford, so I am gonna have to do it the old fashion way... Good ole diet and exercise. Was talking to a friend a few days ago and she reminded me about the Blood Type Diet. I gave it some thought and I think I am going to go back on it. It did help the Fibro and I know it will help with the weight also. I use to walk 4 miles 4 days a week, before Fibromyalgia kicked my butt... but there has to be exercise I am able to do without causing much turmoil in my poor aching body... I know that not getting adequate sleep night after night is not helping the weight nor the Fibro, but what's a Mom to do? Stress... oh the stress has got to stop, I know I am on my way to a heart attack and life long blood pressure problems if I don't nip some of the stress like NOW. Enough is enough... and believe me I have had enough. I am going to focus on changing what I CAN CHANGE, and believe in faith for what I cannot change, knowing my Abba Father CAN.
I installed this great APP for Brynnon's iPad called Rover. It allows him
to do time4learning and other flash based programs for his school work and fun things he enjoys like Animal Jam. So he used it the first week for home school and was comfortable enough to play around on
it. He found a book... "Diary of A Wimpy Kid" which he had heard about from his friend that comes and stays the night, or more often than not the weekends :) So he's looking this digital book with great interest and then it
happened.... As if nothing strange or uncommon or different was
happening, just as naturally as he would ask me for help tying his shoe... he asked his little Brother Brett (7) to read it to him... It secretly broke my heart for him being (12)asking Brett for help, but it was so touching to see Brett step up and read to him... the love was so big, so bright... It was just so touching...
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