April 2004
Mason has just turned 5 and has been registered for Kindergarten for September of 2004. He is eligible for all day kindergarten where he will remain in the regular classroom for the morning and have lunch and a nap and the afternoon in the Special Needs classroom. He is so ready for it. Currently he is in pre-school three mornings per week, and is quite bored at home when the girls are not here. His Epilepsy continues to keep one step ahead of the doctors. He has recently started his tenth treatment. Currently he is on three medications and continues the VNS. In June of 2002 Mason had surgery to implant a Vagal nerve stimulator in an attempt to control his seizures. This is like a pacemaker under his skin in his chest, wired to the Vagal nerve, sending electrical impulses to his brain every few minutes. (look at May 2000 update) They were reduced for a time, but as in all of his meds, the seizures increased again. A year ago we attempted alternative therapy with Mannatech supplements which very quickly quadrupled the number of daily seizures. Over the years we have had many suggestions in alternative treatments, but none are formally documented, so we usually stay away. Some work for some, but we won’t be attempting anything else unless closely supervised by our Neurologist (Whom, we have found out recently, is world renown for her work. We are thankful to God who has provided us with the best!)
The number of Mason’s seizures varies from week to week, month to month. He has not gone a day without one for . . . I can’t even remember. December 2003, on new meds, he went down to one or two per day. That was wonderful! After gradually changing in length and appearance for about eight months, shortly after we moved this fall, his seizures suddenly happened very quickly and became more intense. When he started falling with them last spring he would buckle first and land in a sitting position. Now he would suddenly drop and usually hit his head on the floor. He was having from four to six or more per day, and began wearing a helmet most of the time. Right now he is not wearing a helmet because the new meds have slowed down the seizures enough that Mason sits when he feels it coming on. That’s my theory, anyway. March update on seizures: after having the flu, Mason had three days in a row without me seeing a seizure. That hasn’t happened in at least three years.
As of April 10, we increased meds again, as Mason’s seizures have once again been changing, slowing down, but longer in time. He has also added a new one in the last couple of days. Long blinks. I know they are seizures because of the way the rest of his face gets this blank look or the way his eyes move just before or after the blink.
We had the opportunity to build a house last year. Our previous home sold very quickly, so off we were designing and building. Moving into our new house was quite a pleasant experience in spreading our wings! You can imagine!! We designed this house pretty much around Mason and his abilities and disabilities. His ability to pick locks and escape inspired us to put keyed locks on all the doors on the main floor, including double keyed dead bolts. Mason’s ability to climb as high as possible, has our dining table in storage at Auntie Kim’s place. We designed the kitchen in such a way that we have a raised eating counter that seats seven or eight comfortably. The open design and well placed mirror allows us to know what our trouble maker is up to quite easily. Mason’s room is on the main floor facing the street, where all the activity entertains him when he is ‘supposed’ to be sleeping. Our bedroom is also on the main floor so that I can quickly get to him at night when he is up. The girls’ bedrooms are upstairs, and I must say that they are quite enjoying their own space. The stairs are gated so that Mason can’t go up the stairs but it also gives a place for Asia and Sydney to play with their stuff and protect it from their destructive little brother. Going outside is just one small step into a flat back yard, so Mason will be able to play outside on his own, yet still in full view from inside. And as much as we have made it a ‘Mason proof’ home, he continues to find and conquer new challenges.
Although it’s been quite a while since I updated this web site, I thank you for visiting again. Thank you for your thoughts and prayers, for without them we would not be where we are right now.
May 2004
A quickie update about Mason. After doing quite well for nearly three months (only 1 - 3 seizures per day and sleeping through most nights - new meds since December) Mason’s seizures have been getting worse, so we have increased the newest med, but behavior and extreme emotional issues have developed. Extremely cranky or extremely hyper. We cannot take our eyes off him for even a few seconds at this time. Recently he climbed up the outside of the stairs as high as the second floor. ( although we thought of almost everything in designing this house, we missed one or two things) I ran up quickly, grabbed him, brought him back down, and a minute later he attempted it again. Absolutely no fear or sense of danger. He quite enjoyed it up there. It left me shaking for quite a while, and I cried many times throughout the day.
The next thing on our agenda is trying the Ketogenic diet. Basically it is 90% fat, derived from foods like whipping cream, butter, eggs, bacon, mayonnaise etc. Everything he eats or drinks is weighed to the gram and eaten at specific times. Eating even a cracker would through the whole thing off. Their success rate is in the range of 10 - 15 percent. We will begin June 21 and will be going in to Childrens Hospital for the first four or five days all day for training and watching Mason closely. They used to keep the kids overnight during the first week, but is now on an outpatient basis.
Mason’s seizure “type” is beginning to change, which is expected with Infantile Spasms (IS), his initial diagnosis. The neurologist said it is looking like it’s changing to Lennox-Gastaut Syndrome. The prognosis is about the same as IS, and not a surprise to us.
As for the girls, Asia made the Rep Soccer team (where they play other cities) for next year. It means more driving for us, but it’s something she really wanted. Sydney has also decided to continue playing soccer. I don’t know if she’ll love it as much as Asia does, but Sydney’s best friend is playing, so . . . . . Both girls continue to be incredibly great big sisters to Mason.
