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.
Sunday, April 11, 2004
Thursday, March 11, 2004
Spring 2004
Spring 2004
Mason’s development has progressed a lot from where we stand. In three years he has gained about three months in age and abilities. We are so thankful that he has not regressed. The seizures continue to interrupt his patterns of learning so he tends to get stuck in typical 1 – 2 year old type phases for great lengths of time. He gets quite good at some of the little quirks like manufacturing burps. But it’s better than the ‘screaming to hear his own voice’ stages! A lot of climbing and exploring is on his daily agenda. Pre-school, and daycare before that, have been quite beneficial to him in learning behavior in the classroom and imitating his peers.
Mason is making tiny steps of progress. It all depends on how many seizures he has and how well he is sleeping. He has been sleeping a lot better this spring, sometimes even through the night. For the last three and a half years, his sleep has been interrupted by one or two seizures each night. But as his development progresses, he understands a little more and picks up a new word every few months or so. He is also getting more mischievous as he becomes more alert. Climbing as high as he can, checking the locks to try to escape (which happened the other day. We found him in the van on the driveway.) We have to keep an eye on him constantly. With a sense of adventure, trying new and practiced things with no fear or comprehension of danger, well . . . lots of work is what Mason is.
like ‘outside’, he bolts to the back door and starts crying if we don’t let him out. Other words that have the sThese past couple of weeks have brought us very nice weather and the kids have played outside a lot. Now we have had to start spelling a few words around Mason because he actually understands, quickly, some of the things we say!!! If we say words ame effect: ‘bath’ – runs to the bathroom door, ‘bye bye’ and ‘let’s go’ – cause him to hang on to his jacket or shoes if he can get them and sit and cry at the door to the garage. ‘Breakfast’, ‘lunch’, ‘snack’, and ‘eat’ and he’ll be standing crying at the gate to the kitchen. So he’s getting it! We are in the very early stage of using a Picture Exchange Communication System, where he has to give us the picture of what he wants (totally initiating it himself) before we give it to him. His speech is still very limited, but he babbles a lot lately. It sounds like conversation, but no real words other than and emphatic “no, no!”. Hmmm, does he hear that a lot?
We are still investing heavily into diapers, although we did have one little glimmer of light at the end of the tunnel. On his fifth birthday, Mason peed on the toilet at preschool after seven months of attempts each preschool day. It shocked him as much as anyone!
So the progress is there, discouragingly slow most of the time, but we are moving forward!
Mason’s development has progressed a lot from where we stand. In three years he has gained about three months in age and abilities. We are so thankful that he has not regressed. The seizures continue to interrupt his patterns of learning so he tends to get stuck in typical 1 – 2 year old type phases for great lengths of time. He gets quite good at some of the little quirks like manufacturing burps. But it’s better than the ‘screaming to hear his own voice’ stages! A lot of climbing and exploring is on his daily agenda. Pre-school, and daycare before that, have been quite beneficial to him in learning behavior in the classroom and imitating his peers.
Mason is making tiny steps of progress. It all depends on how many seizures he has and how well he is sleeping. He has been sleeping a lot better this spring, sometimes even through the night. For the last three and a half years, his sleep has been interrupted by one or two seizures each night. But as his development progresses, he understands a little more and picks up a new word every few months or so. He is also getting more mischievous as he becomes more alert. Climbing as high as he can, checking the locks to try to escape (which happened the other day. We found him in the van on the driveway.) We have to keep an eye on him constantly. With a sense of adventure, trying new and practiced things with no fear or comprehension of danger, well . . . lots of work is what Mason is.
like ‘outside’, he bolts to the back door and starts crying if we don’t let him out. Other words that have the sThese past couple of weeks have brought us very nice weather and the kids have played outside a lot. Now we have had to start spelling a few words around Mason because he actually understands, quickly, some of the things we say!!! If we say words ame effect: ‘bath’ – runs to the bathroom door, ‘bye bye’ and ‘let’s go’ – cause him to hang on to his jacket or shoes if he can get them and sit and cry at the door to the garage. ‘Breakfast’, ‘lunch’, ‘snack’, and ‘eat’ and he’ll be standing crying at the gate to the kitchen. So he’s getting it! We are in the very early stage of using a Picture Exchange Communication System, where he has to give us the picture of what he wants (totally initiating it himself) before we give it to him. His speech is still very limited, but he babbles a lot lately. It sounds like conversation, but no real words other than and emphatic “no, no!”. Hmmm, does he hear that a lot?
We are still investing heavily into diapers, although we did have one little glimmer of light at the end of the tunnel. On his fifth birthday, Mason peed on the toilet at preschool after seven months of attempts each preschool day. It shocked him as much as anyone!
So the progress is there, discouragingly slow most of the time, but we are moving forward!
Thursday, September 11, 2003
Summer/Fall 2003
Summer/Fall 2003
We finally got the phone call that we were going to receive respite care for Mason. I don’t remember when we put our names on the wait list, but where many have waited 2 – 3 years, we got on in less than a year and a half. We would receive half time – 14 respite days per year. One day is a 24 hour period when it’s a sleep over, or 10 hours here and there if we don’t take it as a sleep over. We can mix and match this, choose the days that work the best, etc. After lots of paper work and processing, in fall we were told that we would receive the full 28 days! There were people not using all of their respite time!
So we began in November. I asked the person who had been his main caregiver in daycare if she and her husband would be willing to take Mason. Yes, they would!! Now, you have to know some thing about them, Christians, young married couple, lots of energy, and both just adore Mason. The perfect couple in our eyes! Mason’s first overnighter confirmed that for us. A couple of hours after leaving us, they phone us to say that Mason had had 7 seizures in 20 minutes!! We happened to bump into the respite manager at the mall moments before the call came in. Coincidence? I don’t think so. Anyway, after calling Childrens Hospital and talking to a neurologist who didn’t know Mason and couldn’t offer any real solutions, we waited it out. In case of emergency like this we are supposed to use valium to stop the seizures quickly. We wouldn’t do this unless it would be life and death, because valium causes Mason to get severely hyper, can’t touch him, etc. It’s quite bad.
So, Mason had a couple more, but it tapered off and he was ok. We had just started him on a new medication a couple of weeks before, which, when he reached a certain dose, made the seizures worse as we found out.
Through this all, we offered to pick Mason up, but they said they were ok and were handling it well. They seemed confident that they could do it. I said they could call any time of the night if they were uncomfortable with this, but we never did get the call. In the morning they called (or did I?) and the night had gone well with no more seizures. We all pulled through it. So they got about the worst test possible on the first overnighter, and passed with flying colors. Isn’t that great?
It’s during these times that we get a tiny taste of ‘normal’ life. I find myself so relaxed for that twenty-four hour period, and we can leave the interior doors unlocked!
March 2004
March 29 finger print: Mason turned 5 today and I have been having a tough time with it in the last few days. Although he has been showing progress in tiny ways that are exciting, he will never be like other children, and there’s nothing like a birthday to emphasize that. So in the midst of discouragement, God has given me a fabulous birthday gift for Mason that I would like to share with you! For the very first time in his life, Mason peed on the toilet today at preschool! It quite surprised him and it’ll be a while before he’s trained, but it’s a big first step! Anyway, thanks for taking a moment to rejoice with me!!
May 2004
Great news: Daryl’s benefits just approved the full cost of a special needs stroller $2500 for Mason (with all the bells and whistles –except the cup holder – could not persuade that one) ! I am getting a feel for Psalm 23 - about the valley (ours is getting deeper right now with seizures increasing) and the gourmet table God is preparing for us. Surrounded in darkness we can see the sparkle of the most exquisite silverware and crystal glasses on that table he has prepared for us. The stroller approval could not have come at a better time! He is taking such good care of us!!
We finally got the phone call that we were going to receive respite care for Mason. I don’t remember when we put our names on the wait list, but where many have waited 2 – 3 years, we got on in less than a year and a half. We would receive half time – 14 respite days per year. One day is a 24 hour period when it’s a sleep over, or 10 hours here and there if we don’t take it as a sleep over. We can mix and match this, choose the days that work the best, etc. After lots of paper work and processing, in fall we were told that we would receive the full 28 days! There were people not using all of their respite time!
So we began in November. I asked the person who had been his main caregiver in daycare if she and her husband would be willing to take Mason. Yes, they would!! Now, you have to know some thing about them, Christians, young married couple, lots of energy, and both just adore Mason. The perfect couple in our eyes! Mason’s first overnighter confirmed that for us. A couple of hours after leaving us, they phone us to say that Mason had had 7 seizures in 20 minutes!! We happened to bump into the respite manager at the mall moments before the call came in. Coincidence? I don’t think so. Anyway, after calling Childrens Hospital and talking to a neurologist who didn’t know Mason and couldn’t offer any real solutions, we waited it out. In case of emergency like this we are supposed to use valium to stop the seizures quickly. We wouldn’t do this unless it would be life and death, because valium causes Mason to get severely hyper, can’t touch him, etc. It’s quite bad.
So, Mason had a couple more, but it tapered off and he was ok. We had just started him on a new medication a couple of weeks before, which, when he reached a certain dose, made the seizures worse as we found out.
Through this all, we offered to pick Mason up, but they said they were ok and were handling it well. They seemed confident that they could do it. I said they could call any time of the night if they were uncomfortable with this, but we never did get the call. In the morning they called (or did I?) and the night had gone well with no more seizures. We all pulled through it. So they got about the worst test possible on the first overnighter, and passed with flying colors. Isn’t that great?
It’s during these times that we get a tiny taste of ‘normal’ life. I find myself so relaxed for that twenty-four hour period, and we can leave the interior doors unlocked!
March 2004
March 29 finger print: Mason turned 5 today and I have been having a tough time with it in the last few days. Although he has been showing progress in tiny ways that are exciting, he will never be like other children, and there’s nothing like a birthday to emphasize that. So in the midst of discouragement, God has given me a fabulous birthday gift for Mason that I would like to share with you! For the very first time in his life, Mason peed on the toilet today at preschool! It quite surprised him and it’ll be a while before he’s trained, but it’s a big first step! Anyway, thanks for taking a moment to rejoice with me!!
May 2004
Great news: Daryl’s benefits just approved the full cost of a special needs stroller $2500 for Mason (with all the bells and whistles –except the cup holder – could not persuade that one) ! I am getting a feel for Psalm 23 - about the valley (ours is getting deeper right now with seizures increasing) and the gourmet table God is preparing for us. Surrounded in darkness we can see the sparkle of the most exquisite silverware and crystal glasses on that table he has prepared for us. The stroller approval could not have come at a better time! He is taking such good care of us!!
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