Christmas 2005
What a year this has been. It is nearly three months since Mason had brain surgery. We are still amazed the change in this little boy. It was about three weeks in the beginning that we did not see any seizures. Since then he has had extremely mild seizures in the mornings when he wakes up, sometimes barely noticeable. Mason has been fighting a mild cold in the last week or so, and has been waking a lot in the night for the last few days, having quite a cluster of seizures each time – still very mild in form. We see no seizures at all during the day. It still feels very very strange to not have to watch him every second of the day, concerned for his safety. I can even relax when he’s out of my sight as far as his behavior is concerned. Before surgery, I never knew what he would get into or on top of. Always looking for sensory input. Balancing on the back or arm of the couch, licking the windows, obsessed with buttons on the TV and stereo, escaping if we forgot to lock a door. (all our interior doors have keyed locks, as well as both sides of the deadbolts)
Now, I can leave the inside doors unlocked, and he seldom gets into trouble, although I have heard a flushing sound occasionally lately!
We have been doing something in the last few weeks that we haven’t done in over 5 years. Sitting at the dining table as a family. Mason now sits with us on a chair, calm and relaxed for the whole meal! Then when he is finished, he carefully picks up his dishes and carries them (elbows straight out) with great caution to the kitchen. He has even learned to say chi-chin for kitchen. This is a big change from saying “aw-done” then tossing his dishes to the floor while watching the gravity/rebound experiment. He used to have a seizure with most meals with face-plants in his food, so this is so relaxing now!
He continues to learn new things at a pace so much faster than he ever has, although not at the speed with which a typical child does. He follows the routines at school very well, now. Sometimes I watch him through the grade one window with his friends. He will sit at his desk when they do, while he does his “work”. Plays at “centers” he has chosen. His teaching assistant can often stand across the room from him, no longer needing to keep him safe from seizures, or redirect him from challenging behaviors. He is very involved in the grade one classroom most of the day, while spending time in the special ed classroom when the others are doing more difficult work. The kids in his class really like him, and readily volunteer to be Mason's buddy in various situations in school.
Our current challenges are Mason’s levels of anxiety. My theory is that the part of the brain that controls emotion was not functioning before – Mason never showed great amounts of emotion. Now it’s been freed up, along with other areas, so all this new stuff is coming at him all at once. So with this overload of everything, he has become very emotional. He now cries if he sees Asia or Sydney cry. Severe separation anxiety with Mommy. Bedtime is very stressful for him. He has always gone to bed extremely well. Not any more!!! Someone has to be with him in his room until he falls asleep. Asia and Sydney often volunteer, but sometimes only Mommy will do. Although I have figured out that if I leave the house just before bedtime, he goes to bed much better for Daddy! When he goes away for respite, he goes to sleep without a peep.
The bottom line is that this is a very different boy we are getting to know. The most difficult part is that he is unable to communicate well with us. He has a few words, but the concept of communication is still not there most of the time. Crying is the main form of getting our attention. Some days he cries most of the time after school until he goes to bed. We haven’t figured out why yet. We are working with a behavior consultant and will be getting a communication system in place in the New Year.
We are so thankful that Mason’s quality of life has improved so much, no longer getting hurt, having to wear a helmet, having to have someone hover over him all the time. It has also changed the quality of our family life. i can pay more much needed attention to Sydney and Asia. They have been the most amazing daughters and sisters we could have asked for. their adoration for their brother is very obvious. Mason show obvious affection for them as well. Often prefering them over Mommy! That tends to put a proud look on the girls' faces many times.
Currently Asia is 11, in grade 6 at Middle School. She loves having her own locker, and is doing very well in school. She started taking guitar lessions nearly a year ago, and recorded her first song (that she wrote) today!
Sydney just turned 9 and is in grade 4. She and her little friends love to wear scarves as belts and playing with "littlest pet shop" toys. School is more difficult for her, so we were proud of the marks she got on her first report card.
Thank you for your continued thoughts and prayers. God is so good.
Merry Christmas!
Shirley
Monday, December 19, 2005
Saturday, October 29, 2005
One Month Post Surgery
a·stound ( P ) Pronunciation Key ( -stound )tr.v. a·stound·ed, a·stound·ing, a·stounds
To astonish and bewilder. See Synonyms at surprise.
sur·prise ( P ) Pronunciation Key (s r-pr z )tr.v. sur·prised, sur·pris·ing, sur·pris·es
To cause to feel wonder, astonishment, or amazement, as at something unanticipated.
It has been one month (and a couple of days) since our little boy had brain surgery! Our lives have already changed so drastically! The surgery was only supposed to get rid of the big seizures, or reduce the severity of them. We did not see a seizure for three weeks! That has never happened in the whole time Mason has had Epilepsy. That truly is far over and above all that we [dared] to ask or think [infinitely beyond our highest prayers, desires, thoughts, hopes, or dreams]— (Ephesians 3). Early mornings have been the time when he has had the strongest seizures. Friday morning around 6:30 he was moving around, so I went and lay down with him. (I’ve actually been sleeping in my own bed for a couple of weeks now!!) After a bit I felt him have some extremely mild body twitches. I looked at his face and his eyes were open, but not responding to me. This only lasted moments before he fell back asleep, still tucked in. After five years of watching him extremely closely, I still find myself looking at him a lot wondering “was that a seizure?”. We don’t know what is going on inside his brain, only tests in the future will reveal that, but to go from 20 – 30 per day down to next to nothing is nothing short of a miracle.
Mason has been changing so much. He really is a very different boy. He walks now!!! No longer that tilting forward frenzied run! Calm, more relaxed. Attentive in school. Focused, following instructions. Sitting through circle time in grade 1. More responsive to us, chatterbox, copycat, repeating single words all day.
Those are some words that now describe Mason. There is so much more. The changes are happening so very fast. Mason’s speech is really coming along. In the last couple of days he has started yet another new thing. Walking around with his hand out, palm up, telling me “stories”. He’ll walk over to something, facing me and saying something! He has so many new sounds coming out of his mouth, it’s like a whole language. The expression on his face looks like he knows what he is saying, and we understand.
In the past we would usually see new steps of progress every few months . . . maybe. Even those he would often loose as he would have more seizures. Now we see many new things each day. It’s so amazing!! Our house is full of gates and doors with keyed locks just to keep Mason safe. Lately I am able to leave gates open!! He’ll walk into the kitchen and not go for his normal obsessions, water at the tap, dishwasher, stove, microwave fridge door, etc. If I tell him to come out of the kitchen he actually will!!
He has become very aware of his surroundings, which is so good developmentally. The drawback is severe separation anxiety. Now that school is back in session after the strike, we have had opportunity to experience this to the fullest. He screams his little head off each morning. He is in the process of perfecting “jello body”. We really are in the “terrible twos”. So as we walk from the car into the school, either I carry him, or he drops to the ground every few steps. If the ground is dry it isn’t such a big deal. I can’t hold onto him because of the jello effect. When a two year old does this, it’s easy to pick them up and carry on. Not so with a 6 ½ year old. I’m ok to carry him if he isn’t fighting me, but I’m noticing a few extra aches in the joints this week! Moments after I leave the school, he stops crying until he sees me walk in the door at the end of the day.
He is doing so well in school. His teachers and TA’s keep telling me the new things he is doing. We are trying to get speech therapy going. His brain is such a sponge now we really need to take advantage of it. He sits through circle time in grade one. He is really really noisy though. It’s so nice that he has the option of the Special Ed classroom to go to when the grade one kids need to work quietly.
Sometimes I look over the past e-mails I have sent. It really is a great way to journal our journey, while at the same time as sharing a part of our lives with all of you. Right now I feel like the last page of another chapter in our lives has been turned. The Author filled that last page with suspense and anticipation, hope and peace. I am eager to see what happens in the pages coming up. Our life has been like one of those intense books you just can’t put down. I really want to go to the back of the book to see how it will end!! Because we know the Author loves us and has plans for us, good plans, I know the rest of the book will be well written. There will be more moments of suspense, joy, fear, frustration, laughter, and difficulty. The beginning of this next chapter is one of changes, adjustments and confusion at times. We are having to get to know a different boy.
Psalm 40:1-4 I waited patiently for the LORD to help me,
and he turned to me and heard my cry.
He lifted me out of the pit of despair,
out of the mud and the mire.
He set my feet on solid ground
and steadied me as I walked along.
He has given me a new song to sing,
a hymn of praise to our God.
Many will see what he has done and be astounded.
They will put their trust in the LORD.
Your prayers will continue to affect the rest of the book and will be forever marked on the “acknowledgements” page of the book of the life of the Martens family. Thank you so much. Shirley
To astonish and bewilder. See Synonyms at surprise.
sur·prise ( P ) Pronunciation Key (s r-pr z )tr.v. sur·prised, sur·pris·ing, sur·pris·es
To cause to feel wonder, astonishment, or amazement, as at something unanticipated.
It has been one month (and a couple of days) since our little boy had brain surgery! Our lives have already changed so drastically! The surgery was only supposed to get rid of the big seizures, or reduce the severity of them. We did not see a seizure for three weeks! That has never happened in the whole time Mason has had Epilepsy. That truly is far over and above all that we [dared] to ask or think [infinitely beyond our highest prayers, desires, thoughts, hopes, or dreams]— (Ephesians 3). Early mornings have been the time when he has had the strongest seizures. Friday morning around 6:30 he was moving around, so I went and lay down with him. (I’ve actually been sleeping in my own bed for a couple of weeks now!!) After a bit I felt him have some extremely mild body twitches. I looked at his face and his eyes were open, but not responding to me. This only lasted moments before he fell back asleep, still tucked in. After five years of watching him extremely closely, I still find myself looking at him a lot wondering “was that a seizure?”. We don’t know what is going on inside his brain, only tests in the future will reveal that, but to go from 20 – 30 per day down to next to nothing is nothing short of a miracle.
Mason has been changing so much. He really is a very different boy. He walks now!!! No longer that tilting forward frenzied run! Calm, more relaxed. Attentive in school. Focused, following instructions. Sitting through circle time in grade 1. More responsive to us, chatterbox, copycat, repeating single words all day.
Those are some words that now describe Mason. There is so much more. The changes are happening so very fast. Mason’s speech is really coming along. In the last couple of days he has started yet another new thing. Walking around with his hand out, palm up, telling me “stories”. He’ll walk over to something, facing me and saying something! He has so many new sounds coming out of his mouth, it’s like a whole language. The expression on his face looks like he knows what he is saying, and we understand.
In the past we would usually see new steps of progress every few months . . . maybe. Even those he would often loose as he would have more seizures. Now we see many new things each day. It’s so amazing!! Our house is full of gates and doors with keyed locks just to keep Mason safe. Lately I am able to leave gates open!! He’ll walk into the kitchen and not go for his normal obsessions, water at the tap, dishwasher, stove, microwave fridge door, etc. If I tell him to come out of the kitchen he actually will!!
He has become very aware of his surroundings, which is so good developmentally. The drawback is severe separation anxiety. Now that school is back in session after the strike, we have had opportunity to experience this to the fullest. He screams his little head off each morning. He is in the process of perfecting “jello body”. We really are in the “terrible twos”. So as we walk from the car into the school, either I carry him, or he drops to the ground every few steps. If the ground is dry it isn’t such a big deal. I can’t hold onto him because of the jello effect. When a two year old does this, it’s easy to pick them up and carry on. Not so with a 6 ½ year old. I’m ok to carry him if he isn’t fighting me, but I’m noticing a few extra aches in the joints this week! Moments after I leave the school, he stops crying until he sees me walk in the door at the end of the day.
He is doing so well in school. His teachers and TA’s keep telling me the new things he is doing. We are trying to get speech therapy going. His brain is such a sponge now we really need to take advantage of it. He sits through circle time in grade one. He is really really noisy though. It’s so nice that he has the option of the Special Ed classroom to go to when the grade one kids need to work quietly.
Sometimes I look over the past e-mails I have sent. It really is a great way to journal our journey, while at the same time as sharing a part of our lives with all of you. Right now I feel like the last page of another chapter in our lives has been turned. The Author filled that last page with suspense and anticipation, hope and peace. I am eager to see what happens in the pages coming up. Our life has been like one of those intense books you just can’t put down. I really want to go to the back of the book to see how it will end!! Because we know the Author loves us and has plans for us, good plans, I know the rest of the book will be well written. There will be more moments of suspense, joy, fear, frustration, laughter, and difficulty. The beginning of this next chapter is one of changes, adjustments and confusion at times. We are having to get to know a different boy.
Psalm 40:1-4 I waited patiently for the LORD to help me,
and he turned to me and heard my cry.
He lifted me out of the pit of despair,
out of the mud and the mire.
He set my feet on solid ground
and steadied me as I walked along.
He has given me a new song to sing,
a hymn of praise to our God.
Many will see what he has done and be astounded.
They will put their trust in the LORD.
Your prayers will continue to affect the rest of the book and will be forever marked on the “acknowledgements” page of the book of the life of the Martens family. Thank you so much. Shirley
Sunday, October 23, 2005
Changes in Mason
The new Mason.
We have not seen a seizure in 2 ½ weeks (first time in 5 years!). As a result, he is a very different boy. We are still trying to figure him out, but it will probably take some time yet. This is what we have seen so far:
- Much longer attention span.
- Chatterbox, non-stop some days!!!
- Repeating words after us
- Comprehending what we say better
- Following more directions – more cooperative
- On the computer a lot – more interactive than before
- Walking more vs. running
- Can make his voice quieter on occasion
- Sleeping through the night (no seizures waking him)
- Not napping (no seizures to tire him out) – but staying awake late
- Seems to know what he wants sometimes, but is unable to communicate it resulting in more tantrums – throwing himself to the floor
- Mood swings as a result of brain surgery itself – may go on for a while yet ?????
- Mood swings from hunger???
- Sometimes is more difficult to distract if throwing a tantrum (longer attention span!!)
- Loud
- Appetite is much less - sometimes prefers to be fed
- Not drinking enough – keep his water cup with him, meds need to continue to be flushed from his system – he has become an occasional sipper
- Interests seem to have changed ????
- Is bored with adults – needs kids!! – tends to copycat kids more than us adults
- Extreme separation anxiety (has been with Mom nearly every moment for 4 weeks)
New obsessions:
- Repeated touching his nose
- Repeated touching the floor
- Tilting his head onto his right shoulder
- Touches his right eye repeatedly when upset
- Computer – hard to get him off
- Trucks, tractors trains, cars
- Hypersensitive to some sounds - water running scared him for a few days
- There may be other things scaring him that we are not aware of
Ways to distract unwanted behavior:
- Sneeze or cough – he will laugh
- Peek-a-boo – where’s Mason?? (or name of friend . . . .)
- Say “Where’s a truck???”
We have not seen a seizure in 2 ½ weeks (first time in 5 years!). As a result, he is a very different boy. We are still trying to figure him out, but it will probably take some time yet. This is what we have seen so far:
- Much longer attention span.
- Chatterbox, non-stop some days!!!
- Repeating words after us
- Comprehending what we say better
- Following more directions – more cooperative
- On the computer a lot – more interactive than before
- Walking more vs. running
- Can make his voice quieter on occasion
- Sleeping through the night (no seizures waking him)
- Not napping (no seizures to tire him out) – but staying awake late
- Seems to know what he wants sometimes, but is unable to communicate it resulting in more tantrums – throwing himself to the floor
- Mood swings as a result of brain surgery itself – may go on for a while yet ?????
- Mood swings from hunger???
- Sometimes is more difficult to distract if throwing a tantrum (longer attention span!!)
- Loud
- Appetite is much less - sometimes prefers to be fed
- Not drinking enough – keep his water cup with him, meds need to continue to be flushed from his system – he has become an occasional sipper
- Interests seem to have changed ????
- Is bored with adults – needs kids!! – tends to copycat kids more than us adults
- Extreme separation anxiety (has been with Mom nearly every moment for 4 weeks)
New obsessions:
- Repeated touching his nose
- Repeated touching the floor
- Tilting his head onto his right shoulder
- Touches his right eye repeatedly when upset
- Computer – hard to get him off
- Trucks, tractors trains, cars
- Hypersensitive to some sounds - water running scared him for a few days
- There may be other things scaring him that we are not aware of
Ways to distract unwanted behavior:
- Sneeze or cough – he will laugh
- Peek-a-boo – where’s Mason?? (or name of friend . . . .)
- Say “Where’s a truck???”
Sunday, October 16, 2005
Fingerprints of God
I put this into Mason's Web (first website).
I just read it again and so now I want to share it with you today.
Forensic scientists have known for a long time that if a person touches anything with their bare hand, it will leave a fingerprint. And it is not just a smudge, it is a distinct pattern left behind by only one person. In recent years, they have also learned that even minute traces of DNA identify a single person. DNA cannot be seen by the naked eye, yet there is no disputing it. As God our gentle Father sculpts us through every good and bad experience in our lives, He too, leaves behind His unique finger prints and DNA. Because of who He is, I believe that everything he touches is a miracle. His fingerprints are left behind in the miracles that we see with our human eyes. His DNA is woven through every aspect of our lives. In the way we are created to the circumstances he allows to happen. We cannot see its evidence, unless it is revealed to us through the microscopic eyes of His Holy Spirit. When the day arrives that we will meet Jesus face to face, He will reveal all the evidence to us. That is where the pieces will all fall into place.
I put this into Mason's Web (first website).
I just read it again and so now I want to share it with you today.
Forensic scientists have known for a long time that if a person touches anything with their bare hand, it will leave a fingerprint. And it is not just a smudge, it is a distinct pattern left behind by only one person. In recent years, they have also learned that even minute traces of DNA identify a single person. DNA cannot be seen by the naked eye, yet there is no disputing it. As God our gentle Father sculpts us through every good and bad experience in our lives, He too, leaves behind His unique finger prints and DNA. Because of who He is, I believe that everything he touches is a miracle. His fingerprints are left behind in the miracles that we see with our human eyes. His DNA is woven through every aspect of our lives. In the way we are created to the circumstances he allows to happen. We cannot see its evidence, unless it is revealed to us through the microscopic eyes of His Holy Spirit. When the day arrives that we will meet Jesus face to face, He will reveal all the evidence to us. That is where the pieces will all fall into place.
10 days seizure free!!!
Could it get any better??? Actually yes. We have seen huge changes developmentally as well as behaviorally. We really are having to get to know a new child! Mason went away for respite this weekend (he’s coming back this afternoon) . I thought there would be problems with separation anxiety, but no!!! An hour and a half after dropping him off, I got a phone call from this lovely young couple “What did you do with the old Mason?” He’s focusing on his toys, not running from one thing to another every few seconds, happy, talking, trying to copy what we say (single words still). The only negative part is that our ears are ringing by the end of the day from all his non-stop chatter!!! I think he has progressed more in the last couple of weeks, than the last three years!
Although we have not seen any seizures, tests in the future will tell us what kind of activity is going on inside his brain.
With Mason being such a sponge right now, I can’t wait for him to get back into school. He spent a couple of hours in grade one the day before the teachers strike began. He cried so much thinking I was going to leave him. So I stayed as well. Hopefully it will be fine when he does go back. His grade one teacher is very accepting of him. Both she and the kids don’t seem to be bothered by his noise.
It is so amazing to see the far reaching effects these e-mails about Mason have. I’m realizing more that they are touching a lot of people I don’t even know. These e-mails getting forwarded on to others, articles in the CMC Chronicle (church I grew up in) going out to even more people
God had a plan for this boy’s life long before the seizures began. A plan for good, and to prosper him, for hope and a future (Jeremiah 29). And he’s only 6! Mason has a family that loves him dearly, and he affectionately loves back. ( he is very kissy lately) He is so generous with his smiles and kisses to friends so many others in his life. His face and eyes (one brown – one hazel) light up so genuinely it is quite infectious. All of you who read this are a part of the plan as well!! His life is meant (as is with all of us) to bring glory to God and I want to thank you all for letting me use this medium to do that for him.
Shirley
Could it get any better??? Actually yes. We have seen huge changes developmentally as well as behaviorally. We really are having to get to know a new child! Mason went away for respite this weekend (he’s coming back this afternoon) . I thought there would be problems with separation anxiety, but no!!! An hour and a half after dropping him off, I got a phone call from this lovely young couple “What did you do with the old Mason?” He’s focusing on his toys, not running from one thing to another every few seconds, happy, talking, trying to copy what we say (single words still). The only negative part is that our ears are ringing by the end of the day from all his non-stop chatter!!! I think he has progressed more in the last couple of weeks, than the last three years!
Although we have not seen any seizures, tests in the future will tell us what kind of activity is going on inside his brain.
With Mason being such a sponge right now, I can’t wait for him to get back into school. He spent a couple of hours in grade one the day before the teachers strike began. He cried so much thinking I was going to leave him. So I stayed as well. Hopefully it will be fine when he does go back. His grade one teacher is very accepting of him. Both she and the kids don’t seem to be bothered by his noise.
It is so amazing to see the far reaching effects these e-mails about Mason have. I’m realizing more that they are touching a lot of people I don’t even know. These e-mails getting forwarded on to others, articles in the CMC Chronicle (church I grew up in) going out to even more people
God had a plan for this boy’s life long before the seizures began. A plan for good, and to prosper him, for hope and a future (Jeremiah 29). And he’s only 6! Mason has a family that loves him dearly, and he affectionately loves back. ( he is very kissy lately) He is so generous with his smiles and kisses to friends so many others in his life. His face and eyes (one brown – one hazel) light up so genuinely it is quite infectious. All of you who read this are a part of the plan as well!! His life is meant (as is with all of us) to bring glory to God and I want to thank you all for letting me use this medium to do that for him.
Shirley
Monday, October 10, 2005
Happy Thanksgiving!!
Hello all!!!
Mason is doing extremely well. I have not seen any seizures since Saturday or a possibly a mild one on Friday that I am not sure about. That boy has become such a chatterbox!!! He has been trying to imitate everything we say. It is so amazing to see him making so much progress. Full of beans, noisy, and yet more cooperative with following some instructions.
Thank you so much for your continued prayers. It has been exactly 5 years (on the 12th) since Mason was diagnosed with Infantile Spasms, a rare form of Epilepsy, (now progressed to Lennox Gastaut Syndrome). I had started noticing the "odd movement" (early seizures) during the last week of September and first week of October in 2000.
For the last 5 years, we have seldom gone more than a few weeks without constant changes happening. Last summer was the longest break we had in the early months of the Ketogenic Diet, with Mason holding steady for a couple of months. So, being on this constant roller coaster ride makes us really covet your continued prayers. And at the same time, we are so incredibly thankful for your support. God has really been good to us in providing us with each one of you. As well as many people that we don’t even know who think of us and pray for us.
Thanksgiving weekend, five years ago, was a weekend of great fear with increasing seizures, tears and crying out to God, knowing something unknown was terribly wrong with Mason.
This Thanksgiving we are truly thankful for the goodness of God over these five years. He has really taken care of our needs and brought so many amazing people into our lives. And what an miraculous time we are in right now, after the brain surgery!! As always, we don’t know what tomorrow holds, but we rest in the One who does.
Happy Thanksgiving!! : - )
Daryl & Shirley
Asia, Sydney, and Mason
Mason is doing extremely well. I have not seen any seizures since Saturday or a possibly a mild one on Friday that I am not sure about. That boy has become such a chatterbox!!! He has been trying to imitate everything we say. It is so amazing to see him making so much progress. Full of beans, noisy, and yet more cooperative with following some instructions.
Thank you so much for your continued prayers. It has been exactly 5 years (on the 12th) since Mason was diagnosed with Infantile Spasms, a rare form of Epilepsy, (now progressed to Lennox Gastaut Syndrome). I had started noticing the "odd movement" (early seizures) during the last week of September and first week of October in 2000.
For the last 5 years, we have seldom gone more than a few weeks without constant changes happening. Last summer was the longest break we had in the early months of the Ketogenic Diet, with Mason holding steady for a couple of months. So, being on this constant roller coaster ride makes us really covet your continued prayers. And at the same time, we are so incredibly thankful for your support. God has really been good to us in providing us with each one of you. As well as many people that we don’t even know who think of us and pray for us.
Thanksgiving weekend, five years ago, was a weekend of great fear with increasing seizures, tears and crying out to God, knowing something unknown was terribly wrong with Mason.
This Thanksgiving we are truly thankful for the goodness of God over these five years. He has really taken care of our needs and brought so many amazing people into our lives. And what an miraculous time we are in right now, after the brain surgery!! As always, we don’t know what tomorrow holds, but we rest in the One who does.
Happy Thanksgiving!! : - )
Daryl & Shirley
Asia, Sydney, and Mason
Just want to send a quick note for prayer request.
Mason started having new seizures this evening (Thursday). We were told to expect different seizure types. He had three where he went all limp and non-responsive. He has also been quite moody in the last couple of days, as well as poking his right eye a lot, for reasons I don’t know.
We had also been anticipating some nursing home support through Daryl’s work insurance, but have now been denied. Pray for our continued strength.
I want to share some inspiration on a card we received from Daryl’s Aunt and Uncle today. (perfect timing once again . . .)
God will get you through -
Not somehow,
But
Triumphantly
Inside:
He can do what
Our strength could
Never do …
He will do what
our hearts could
never imagine.
Romans 8:32 (NIV)
He who did not spare his own Son, but gave him up for us all-how will he not also, along with him, graciously give us all things?
. . . . . To Him who has already done more and will do more than we can even dare to ask or think. . . . To Him be the glory . . .
Saturday, October 01, 2005
After Surgery - Saturday
Mason is sleeping right now. He’s been having great naps.
So here’s a little more in-depth of what has been happening.
Mason actually had two surgeries. I don’t think I’ve mentioned the other one, seemed so minor. A few years ago Mason had the VNS implanted. (read more at www.bluesticker.com/mason) it has not been affecting the seizures in a very long time, but there was no harm in leaving it in. So now that he was in for the brain surgery anyway, may as well take out the VNS. About a 45 minute procedure. So that incision is underneath his left arm pit area. I don’t think that Mason has even noticed it.
As a refresher: the brain surgery that Mason had is called Corpus Callosotomy. The surgeon severed the part of the brain where the left and right side of the brain communicate with each other, stopping the seizure from crossing from one side to the other causing the big seizures - tonic drop seizures, tonic clonic (grand mal)) and the like. The purpose was to decrease the intensity of the seizures, not the amount
So far, the number of seizures has dropped by about 90% - not really expected but accepted!!! He was having 20 - 30, and now just a few in the mornings. The intensity has also decreased by the same amount. The morning seizures have been the strongest and worst, causing Mason to fall and hurt himself, as well as have some difficulty breathing. Monday, a week before the surgery, he had three tonic clonic seizures before school. Really wiped him out, and the first one had his face buried in the blanket with little or no breathing room. Now his seizures are tiny little twitches, hardly noticeable if we’re not looking.
There could be changes along the way, especially in the first few weeks until the swelling goes down. His face had a bit of swelling the first day or two, but if he’s wearing a hat, you wouldn’t know a thing was different. The incision is longer than originally anticipated. It’s like a big staple shape. Because Mason had a lot of blood vessels at the top of his head, the incision was made to be able to into the brain from the front for part of the surgery and the back for the rest. As it turned out, our gifted surgeon was able to do the entire process from the front only, eliminating the need to disturb the back part of the brain. Although the surgery time was anticipated at 3 ½ to 4 hours, the brain surgery actually took about 4 ½ hours. With the rest of the time taken for the VNS.
I am figuring out pain management and why he cries. Yesterday he had been crying a lot, gave him Tylenol with codeine. Didn’t do much. I was a little concerned. Then we fed him supper. He ate 3 pieces of lasagna and garlic toast. He was very happy after. His cries have changed, so I have to get used to them.
Today has been a great day for Mason. Lots of laughing and giggling, triggered by burping and peek-a-boo. He even had some bounced to his step today, so I see running and jumping starting shortly!
So that’s it for today. I hope you can all see how important you are in the miracles of Mason’s life. Thanks for your support! He’s just woken up, so I gotta run! Shirley
So here’s a little more in-depth of what has been happening.
Mason actually had two surgeries. I don’t think I’ve mentioned the other one, seemed so minor. A few years ago Mason had the VNS implanted. (read more at www.bluesticker.com/mason
As a refresher: the brain surgery that Mason had is called Corpus Callosotomy. The surgeon severed the part of the brain where the left and right side of the brain communicate with each other, stopping the seizure from crossing from one side to the other causing the big seizures - tonic drop seizures, tonic clonic (grand mal)) and the like. The purpose was to decrease the intensity of the seizures, not the amount
So far, the number of seizures has dropped by about 90% - not really expected but accepted!!! He was having 20 - 30, and now just a few in the mornings. The intensity has also decreased by the same amount. The morning seizures have been the strongest and worst, causing Mason to fall and hurt himself, as well as have some difficulty breathing. Monday, a week before the surgery, he had three tonic clonic seizures before school. Really wiped him out, and the first one had his face buried in the blanket with little or no breathing room. Now his seizures are tiny little twitches, hardly noticeable if we’re not looking.
There could be changes along the way, especially in the first few weeks until the swelling goes down. His face had a bit of swelling the first day or two, but if he’s wearing a hat, you wouldn’t know a thing was different. The incision is longer than originally anticipated. It’s like a big staple shape. Because Mason had a lot of blood vessels at the top of his head, the incision was made to be able to into the brain from the front for part of the surgery and the back for the rest. As it turned out, our gifted surgeon was able to do the entire process from the front only, eliminating the need to disturb the back part of the brain. Although the surgery time was anticipated at 3 ½ to 4 hours, the brain surgery actually took about 4 ½ hours. With the rest of the time taken for the VNS.
I am figuring out pain management and why he cries. Yesterday he had been crying a lot, gave him Tylenol with codeine. Didn’t do much. I was a little concerned. Then we fed him supper. He ate 3 pieces of lasagna and garlic toast. He was very happy after. His cries have changed, so I have to get used to them.
Today has been a great day for Mason. Lots of laughing and giggling, triggered by burping and peek-a-boo. He even had some bounced to his step today, so I see running and jumping starting shortly!
So that’s it for today. I hope you can all see how important you are in the miracles of Mason’s life. Thanks for your support! He’s just woken up, so I gotta run! Shirley
After Surgery - Friday
Hello all.
Your prayers are so appreciated and hard at work.
We came home today. We actually could have come home yesterday, but I opted to stay one more night. 3 days in hosp. After brain surgery!!!
Still working out why he cries - pain - hunger - discomfort etc.
I’ll write more after he’s in bed tonight . . . if I don’t fall asleep at the same time!
Your prayers are so appreciated and hard at work.
We came home today. We actually could have come home yesterday, but I opted to stay one more night. 3 days in hosp. After brain surgery!!!
Still working out why he cries - pain - hunger - discomfort etc.
I’ll write more after he’s in bed tonight . . . if I don’t fall asleep at the same time!
After Surgery - Wednesday
I am sitting in Mason’s room up on the neurology ward now. He was let out of ICU this morning. Mason is still sleeping quite a bit. It’s so unusual seeing this normally non-stop active boy lay in a bed a lot. But he is doing well. When I spoke with the surgeon this morning he asked me how I felt Mason was doing. I said he was getting a little more alert all the time. Then I asked how he felt about how Mason was doing. He said he was very pleased with how every thing was going.
Mason has had several seizures, although not nearly as severe. But that is expected for the first few weeks until the swelling goes down.
Mason yanked of the head dressing a little while ago, eliminating the need to ask the dr when to take it off.
Mason has been rubbing his face a lot, so he has been given benadryl now for being itchy. He has been off the morphine for a few hours now, and a bunch of the other hookups are off.
He has been giving us the occasional smile and giggles when we fake sneeze or play peek-a-boo. He has also started kissing his stuffies already. (Daddy bought him a new little white puppy) and we found a little magnadoodle to draw on.
Asia and Sydney are coming to visit Mason tomorrow.
Thanks again for your continued prayers and thoughts!
Love Shirley, via Daryl’s e-mail for the Martens gang
5 hours latter…Daryl here
Mason ate a small box of cheerios and then almost all of his supper.
He’s been awake for 5 hours now doing really good.
The doctors are amazed how well he is doing. Lots of kids are very nauseated…Mason none.
Thanks All …Daryl
Mason has had several seizures, although not nearly as severe. But that is expected for the first few weeks until the swelling goes down.
Mason yanked of the head dressing a little while ago, eliminating the need to ask the dr when to take it off.
Mason has been rubbing his face a lot, so he has been given benadryl now for being itchy. He has been off the morphine for a few hours now, and a bunch of the other hookups are off.
He has been giving us the occasional smile and giggles when we fake sneeze or play peek-a-boo. He has also started kissing his stuffies already. (Daddy bought him a new little white puppy) and we found a little magnadoodle to draw on.
Asia and Sydney are coming to visit Mason tomorrow.
Thanks again for your continued prayers and thoughts!
Love Shirley, via Daryl’s e-mail for the Martens gang
5 hours latter…Daryl here
Mason ate a small box of cheerios and then almost all of his supper.
He’s been awake for 5 hours now doing really good.
The doctors are amazed how well he is doing. Lots of kids are very nauseated…Mason none.
Thanks All …Daryl
After Surgery - Tuesday
I am watching mason sleep right now. Daryl will send this later for me. First time for everything: Mason fell asleep 5 minutes before being sedated with gas this morning. He never noticed a thing. He's been sedated for a variety of tests and VNS surgery and it is always a traumatic experience for him and me! So this was a HUGE gift!
Surgery went very well. He was in nearly 5 ½ hours (longer than anticipated). I was talking to him shortly after he got to ICU, “you had a big nap!” he responded “no”. it’s 5 pm right now, and Mason has been sleeping most of the time. The surgeon said the surgery went very well.
Surgery went very well. He was in nearly 5 ½ hours (longer than anticipated). I was talking to him shortly after he got to ICU, “you had a big nap!” he responded “no”. it’s 5 pm right now, and Mason has been sleeping most of the time. The surgeon said the surgery went very well.
Monday MRI
Super super quick note.
The MRI went well today, other than the trauma and tear of being sedated. (his tears and mine!) Mason co-operated with everything well. Usually getting his weight & height are as distressing as getting blood work done! Not today. He was quite complacent today, even tempered and happy.
The prayer time at church tonight was so wonderful leaving me feel enveloped with open arms by family, friends and strangers alike. So thank you for all of you who joined us. And to those who were not able to make it, thank you for your prayers from afar. Our circle of support is incredible. Our God is immense.
Well I should get prepared. I will be getting an e-mail out, hopefully tomorrow, via Daryl.
Thanks again for your support in prayer and in offers of helping out. Sooner or later I will take you all up on it.
The MRI went well today, other than the trauma and tear of being sedated. (his tears and mine!) Mason co-operated with everything well. Usually getting his weight & height are as distressing as getting blood work done! Not today. He was quite complacent today, even tempered and happy.
The prayer time at church tonight was so wonderful leaving me feel enveloped with open arms by family, friends and strangers alike. So thank you for all of you who joined us. And to those who were not able to make it, thank you for your prayers from afar. Our circle of support is incredible. Our God is immense.
Well I should get prepared. I will be getting an e-mail out, hopefully tomorrow, via Daryl.
Thanks again for your support in prayer and in offers of helping out. Sooner or later I will take you all up on it.
Sunday, September 18, 2005
Hello Friends
Well it’s only nine days until Mason’s surgery. I have had moments of fear about the surgery, quickly brought it before God and it dissipated. (wouldn’t it be great if I did that in all areas of my life, all the time!!!!)
Couple of things happening on the 26th of September, the day before surgery, the first is the MRI in the afternoon.
A very important event in the evening. We will be bringing Mason to the church to the Monday night Pray First Team to be prayed over by the elders and pastors. Others will also be there, including family and friends. If you would like to join us, that would be great! If possible, let me know so I can let them know in advance of how many will come. We are currently planning to be there right at 7 pm.
Ephesians 3:20, 21 has been popping into my head a lot lately:
NIV
20 Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, 21 to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen
Amplified Version:
20 Now to Him Who, by (in consequence of) the [action of His] power that is at work within us, is able to [carry out His purpose and] do superabundantly, far over and above all that we [dare] ask or think [infinitely beyond our highest prayers, desires, thoughts, hopes, or dreams]--
21 To Him be glory in the church and in Christ Jesus throughout all generations forever and ever. Amen (so be it).
Bye for now!!
Love & Thanks Shirley
Ps. I don’t mind if you forward this onto others. There can’t be too many people praying for this boy!! There are also some people on my list that the e-mails, for some reason, won’t go through. So if you get this as a forward that’s great!
Well it’s only nine days until Mason’s surgery. I have had moments of fear about the surgery, quickly brought it before God and it dissipated. (wouldn’t it be great if I did that in all areas of my life, all the time!!!!)
Couple of things happening on the 26th of September, the day before surgery, the first is the MRI in the afternoon.
A very important event in the evening. We will be bringing Mason to the church to the Monday night Pray First Team to be prayed over by the elders and pastors. Others will also be there, including family and friends. If you would like to join us, that would be great! If possible, let me know so I can let them know in advance of how many will come. We are currently planning to be there right at 7 pm.
Ephesians 3:20, 21 has been popping into my head a lot lately:
NIV
20 Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, 21 to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen
Amplified Version:
20 Now to Him Who, by (in consequence of) the [action of His] power that is at work within us, is able to [carry out His purpose and] do superabundantly, far over and above all that we [dare] ask or think [infinitely beyond our highest prayers, desires, thoughts, hopes, or dreams]--
21 To Him be glory in the church and in Christ Jesus throughout all generations forever and ever. Amen (so be it).
Bye for now!!
Love & Thanks Shirley
Ps. I don’t mind if you forward this onto others. There can’t be too many people praying for this boy!! There are also some people on my list that the e-mails, for some reason, won’t go through. So if you get this as a forward that’s great!
Surgery Date
August 17, 2005
Hello all,
Summer is going well. We’ve been doing some holidaying, having a great time at a campground. Mason loves, I mean really loves, digging on the gravel lot!
Anyway, we met with the neurologist and neurosurgeon a few weeks ago and here is a quick overview of what will happen:
~Mason will have an MRI on September 26 (1 pm) to determine where the blood vessels are at the top of his head where they will go in.
~Surgery will be on September 27 lasting 3 ½ to 4 hours. The incision will be along the top of his head, front to back, 3 or 4 inches long or so, depending on where the blood vessels are.
~He will be in the hospital 4 or 5 days
~Back at school after about 2 weeks (after surgery)
~They listed off a few possible complications most of which tend to correct themselves shortly
~Permanent complications would depend mostly on if any of the blood vessels that cross the top of the head were nicked or severed. Therefore the MRI the day before to avoid that.
~They will completely sever the corpus callosum (often they will attempt a partial first, but because of the severity of Mason’s lack of development, the issues that would normally be affected, won’t matter)
~Mason is currently having at least 20 to 30 Tonic seizures per day (not counting his blinking seizures) , according to the EEG intensive monitoring we did a little while back. Those are the seizures that take over his whole brain. That includes those that we don’t notice, but only happen in the brain. This surgery will keep the seizure to the side where it began, keeping it to a focal seizure which in Mason looks like blinking most of the time.
~Neuro-Psych testing appointment on August 18. Meeting with the psychologist (9am – 3 pm) to play with toys and talk. This will help further determine what Mason knows, can do, and what ages he is at developmentally in different areas.
Currently, Mason is doing quite well during the day. Mostly blinking seizures so he isn’t wearing a helmet most days. The worst times are between 5 and 9 am, where they seem to go on back to back in clusters. They also increase somewhat after supper.
Daryl remade the sandbox recently, and the backyard is a place of great pleasure for Mason. The girls are enjoying the summer. Both have had their week at Camp Squeah Bible camp. Seeing friends and spending a lot of time at the trailer and swimming there.
We have not felt anxious about the surgery coming up. We are confident that God is in control, whatever the outcome. He has gifted these doctors greatly. We have had nothing but positive things to say about Childrens Hospital here in Vancouver. Mason’s neurologist, Dr. Mary Connolly has been very supportive and humble. As well as being one of the best in her field internationally.
As I look back on our life and the way circumstances, jobs and homes have taken us down different paths, pointing us to where we are today, there can be no question that our Heavenly Father is really looking after us, even in our tendency to be distracted by other things, and we take our focus off Him.
Thank you again for being part of our circle of family, friends, and supporters. (this includes those of you that are not on my current list, but get these updates and information in other ways!!)
Thanks again!!
Love Shirley and Daryl
July18, 2005
Hello all
Well the Dr’s have recommended the corpus callosotomy brain surgery for Mason, as we expected. Daryl and I will meet with the neurologist and neurosurgeon on Wednesday, July 27 to discuss the details. We also have a surgery date for September 27. The timing is perfect, as my sister Kim is getting married on September 24, in Vancouver, and my mom and other sister will be here to help out without having to make an extra trip.
As always, we covet your prayers for wisdom and the right direction for the doctors. Also for the waiting time, that Mason’s seizures won’t get worse, and all the rest involved with something as major as brain surgery.
I’ll let you know more details after our July 27 appointment.
Hello all
Well the Dr’s have recommended the corpus callosotomy brain surgery for Mason, as we expected. Daryl and I will meet with the neurologist and neurosurgeon on Wednesday, July 27 to discuss the details. We also have a surgery date for September 27. The timing is perfect, as my sister Kim is getting married on September 24, in Vancouver, and my mom and other sister will be here to help out without having to make an extra trip.
As always, we covet your prayers for wisdom and the right direction for the doctors. Also for the waiting time, that Mason’s seizures won’t get worse, and all the rest involved with something as major as brain surgery.
I’ll let you know more details after our July 27 appointment.
Tuesday, June 21, 2005
MRI Date
We got the phone call today for an MRI appointment. This Thursday morning. The doctors will be discussing Mason at their next surgery meeting . . I think July 14. It involves several neurologists, neurosurgeon, nurses, psychologists, where they discuss whether the kids are good candidates for the various types of epilepsy surgery. ( I mentioned the corpus callosotomy brain surgery in the last update)
Also, Mason’s nighttime seizures have been increasing. Last night he had one at 1 am, and it looks like he fractured or severely bruised his nose. I had started putting his helmet on around 5 am (he has been having two or three drop seizures between 5 and 8 am – they come on suddenly and he buckles and falls to the floor – often after hitting the window sill first – he likes looking out of his window when he wakes), but now will I spend more of the night in his room. I don’t sleep as well, but Mason is safer that way. So hopefully the possibility of brain surgery will be fast tracked.
Well, thank you for your continued prayers. God really does answer them!!! Time to get ready for going along on Mason’s kindergarten field trip tomorrow!!
Off to White Rock. Forecast – RAIN - !?!?!?!?!?!?
Also, Mason’s nighttime seizures have been increasing. Last night he had one at 1 am, and it looks like he fractured or severely bruised his nose. I had started putting his helmet on around 5 am (he has been having two or three drop seizures between 5 and 8 am – they come on suddenly and he buckles and falls to the floor – often after hitting the window sill first – he likes looking out of his window when he wakes), but now will I spend more of the night in his room. I don’t sleep as well, but Mason is safer that way. So hopefully the possibility of brain surgery will be fast tracked.
Well, thank you for your continued prayers. God really does answer them!!! Time to get ready for going along on Mason’s kindergarten field trip tomorrow!!
Off to White Rock. Forecast – RAIN - !?!?!?!?!?!?
Thursday, June 09, 2005
We're home !!!!!!!!!
Hello everyone!!!!!!!
Thank you, Thank you, Thank you, Thank you, Thank you, Thank you . . . for your prayers. Were they ever answered!! But, I’ll start at the beginning . . .
First off the appointment was very nearly cancelled because Mason had been exposed to chicken pox. Potentially very serious for kids that are already sick in the hospital. So they make sure that kids that have been exposed don’t come near. Neurology department over-ruled Infectious Diseases department, because they didn’t want Mason to wait again. That ends up making more work for those on the ward. Gowns, gloves, masks, extra hand washing, etc. And because of this, Mason was hooked up to the EEG on the ward instead of the EEG room. Not as comfortable, etc. The room also reminded Mason of going to Emergency several weeks back.
Screaming began the moment we walked in the door. He settled after a few minutes while we waited for the technician. We always strap him down and wrap him up to keep his arms and legs down. He normally cries and screams while it’s being done, but has tended to settle down partially after a while. This time there was NO settling down. He literally screamed for the entire time. Over an hour. His face was redder than I ever could have imagined. And I have seen him scream and cry before!!! Daryl’s Mom came along and she held down his lower legs. I held down his body. (with our bodies, that is) one technician held his face and head while another tech glued on the EEG leads. (long wires with little discs at the end that are attached to a computer) they glued on 25 (up to 30 in the past). Mason wasn’t the only one who cried. I still find this very emotional to even write about it. Later I noticed that he had a lot of red dots above and below his eyes. Initially I thought it was residue from the marker they use to mark the spots on his head. They were actually spots where tons of blood vessels burst from crying so hard and so long.
That is where the bad stuff ends. The rest of the story is happy with a happy ending . . . .
A few minutes after returning to his room (isolation) he perked up and smiled and was himself for a few minutes. Then the seizures began. Yeah! The more seizures, the more information the doctor would get, and the sooner we could go home. so, over the 24 hour period, he had a lot. A real answer to prayer. It is not uncommon for kids to suddenly not have seizures or have a lot less when they are going for testing, making the process longer. I think he had close to 15 seizures while in the hospital. One was around an hour long, with several different kinds happening during that time. There were a couple of others that were 20 - 40 minutes long. So it was good to see that happen there so the doctor could see them.
Also . . . Mason stayed in his bed the whole time!!!!!!!!!!!!! That is nothing less that a miracle. This is a boy who does not walk. He runs and runs and runs, oh and climbs and climbs and explores. He is constantly on the move. He had to stay in the bed because he was hooked up to a computer and he had to remain in the view of the video camera. The first time he tried to get out of bed was an hour before we left today. Not once in that entire 23 hours prior did Mason even indicate that he wanted to get out. That is so not like him! He also only put his hand to his head a few times, and we would say "no, Mason" and he would put his hand down. No wires pulled or tugged at!!
Daryl came after work for a while, then took his Mom home. My sister Kim came a while before they left and stayed overnight with me. Someone had to constantly be watching Mason because we had to press a button each time a seizure started. We took turns sleeping. Not easy to do with all the bright lights on all night! I got just over 3 hours of sleep in total. Mason on the other hand had no problem sleeping with the lights on. He woke a couple of times because of seizures, but had a great 7 hour stretch in the middle. He was a happy kid through out the whole ordeal after the initial hook up.
After reviewing some of the data, Dr. Connolly told me that it looked like Mason would be a good candidate for the corpus callosotomy brain surgery which has a very good success rate for eliminating drop seizures.
Mason will have an MRI once the chicken pox risk is gone, as well.
The happy ending . . . . we’re home!!!!!!!!!!!!!!!
Thank you so very much for your prayers. God is so good in hearing and answering, isn’t He?!?!?!?
1 Chronicles 16:8-12
Give thanks to the LORD, call on his name;
make known among the nations what he has done.
Sing to him, sing praise to him; tell of all his wonderful acts.
Glory in his holy name; let the hearts of those who seek the LORD rejoice.
Look to the LORD and his strength; seek his face always.
Remember the wonders he has done, his miracles, and the judgments he pronounced,
Love, Shirley
Thank you, Thank you, Thank you, Thank you, Thank you, Thank you . . . for your prayers. Were they ever answered!! But, I’ll start at the beginning . . .
First off the appointment was very nearly cancelled because Mason had been exposed to chicken pox. Potentially very serious for kids that are already sick in the hospital. So they make sure that kids that have been exposed don’t come near. Neurology department over-ruled Infectious Diseases department, because they didn’t want Mason to wait again. That ends up making more work for those on the ward. Gowns, gloves, masks, extra hand washing, etc. And because of this, Mason was hooked up to the EEG on the ward instead of the EEG room. Not as comfortable, etc. The room also reminded Mason of going to Emergency several weeks back.
Screaming began the moment we walked in the door. He settled after a few minutes while we waited for the technician. We always strap him down and wrap him up to keep his arms and legs down. He normally cries and screams while it’s being done, but has tended to settle down partially after a while. This time there was NO settling down. He literally screamed for the entire time. Over an hour. His face was redder than I ever could have imagined. And I have seen him scream and cry before!!! Daryl’s Mom came along and she held down his lower legs. I held down his body. (with our bodies, that is) one technician held his face and head while another tech glued on the EEG leads. (long wires with little discs at the end that are attached to a computer) they glued on 25 (up to 30 in the past). Mason wasn’t the only one who cried. I still find this very emotional to even write about it. Later I noticed that he had a lot of red dots above and below his eyes. Initially I thought it was residue from the marker they use to mark the spots on his head. They were actually spots where tons of blood vessels burst from crying so hard and so long.
That is where the bad stuff ends. The rest of the story is happy with a happy ending . . . .
A few minutes after returning to his room (isolation) he perked up and smiled and was himself for a few minutes. Then the seizures began. Yeah! The more seizures, the more information the doctor would get, and the sooner we could go home. so, over the 24 hour period, he had a lot. A real answer to prayer. It is not uncommon for kids to suddenly not have seizures or have a lot less when they are going for testing, making the process longer. I think he had close to 15 seizures while in the hospital. One was around an hour long, with several different kinds happening during that time. There were a couple of others that were 20 - 40 minutes long. So it was good to see that happen there so the doctor could see them.
Also . . . Mason stayed in his bed the whole time!!!!!!!!!!!!! That is nothing less that a miracle. This is a boy who does not walk. He runs and runs and runs, oh and climbs and climbs and explores. He is constantly on the move. He had to stay in the bed because he was hooked up to a computer and he had to remain in the view of the video camera. The first time he tried to get out of bed was an hour before we left today. Not once in that entire 23 hours prior did Mason even indicate that he wanted to get out. That is so not like him! He also only put his hand to his head a few times, and we would say "no, Mason" and he would put his hand down. No wires pulled or tugged at!!
Daryl came after work for a while, then took his Mom home. My sister Kim came a while before they left and stayed overnight with me. Someone had to constantly be watching Mason because we had to press a button each time a seizure started. We took turns sleeping. Not easy to do with all the bright lights on all night! I got just over 3 hours of sleep in total. Mason on the other hand had no problem sleeping with the lights on. He woke a couple of times because of seizures, but had a great 7 hour stretch in the middle. He was a happy kid through out the whole ordeal after the initial hook up.
After reviewing some of the data, Dr. Connolly told me that it looked like Mason would be a good candidate for the corpus callosotomy brain surgery which has a very good success rate for eliminating drop seizures.
Mason will have an MRI once the chicken pox risk is gone, as well.
The happy ending . . . . we’re home!!!!!!!!!!!!!!!
Thank you so very much for your prayers. God is so good in hearing and answering, isn’t He?!?!?!?
1 Chronicles 16:8-12
Give thanks to the LORD, call on his name;
make known among the nations what he has done.
Sing to him, sing praise to him; tell of all his wonderful acts.
Glory in his holy name; let the hearts of those who seek the LORD rejoice.
Look to the LORD and his strength; seek his face always.
Remember the wonders he has done, his miracles, and the judgments he pronounced,
Love, Shirley
Coming up
Hello
Last time around a let you know of a couple of events coming up for Mason. The dental appointment went great. They first put him to sleep with gas before giving him the IV. J no pain for the boy!! He came out of it with 6 minor fillings, and a halloween pumpkin smile. He had lost a tooth the week before, one other adult tooth was halfway in, then had two loose teeth pulled while at the hospital. It all went very well. Great recovery. Actually I was hoping he would be a little more sleepy. Not.
Today is the day we are going in to Childrens Hospital overnight for Intensive Monitoring. About 30 little wires will be glued to his head for an EEG to read the electrical activity in his brain. He will be videoed during this time as well. The hard part will be keeping this EXTREMELY active boy in a small area to capture every move on video for 24 hours or so. (pray that he will have LOTS of seizures during this time so we don’t have to stay longer) Our appointment begins at 1 pm this afternoon. It was nearly canceled because Mason was exposed to chicken pox last week, miraculously, they are letting him in, although it put them through more work keeping him in isolation etc.
Gotta run, now, and get the kids off to school. Thanks for your continued prayers and thoughts. !!!
Thursday, May 12, 2005
Hi,
I just want to send out a quick note to let you know what’s been happening.
On Thursday night, May 5, Mason started having a seizure at supper time, and it kept going on, - not eating, staring, blinking, drooling etc. After a few minutes, I felt his forehead and noticed it was warm. I gave him Tylenol, he continued the seizure. His fever kept going up slowly. He seemed to have moments where it looked like it was ending. After a while, I phoned the neurologist on call at Childrens Hospital and he recommended that we call an ambulance, so we did. Because this was something we had not experienced before, and we didn’t want to wait at the ER, and we did not know what could happen between home and the hospital, the ambulance was the right choice. We got in very quickly. They put a saline IV in and eventually the fluids and another dose of Tylenol finally started to bring Mason’s temperature down. finally he fell asleep at 11 pm. (the seizure kept him awake). This is called non-convulsive status epilepticus. The definition is a seizure that does not stop. Mason’s lasted for 5 hours. He slept a lot the next day.
After talking to the nurse and doctor over the next few days, they called Mason in for the following Wednesday to train me on a rectally administered drug to stop the seizures at home. Normally Valium or Ativan (for you nurses out there) are used, but they don’t work on Mason. We don’t know if this one would either, but we’ll try.
Next week I’ll be training the teachers and TA’s at school in what to look for and when to call me or an ambulance. We have something in place already, but not for this type of seizure.
Tomorrow morning, Friday, Mason will be in the local hospital for dental work. He won’t let the dentist in, so he will be put to sleep for cleaning and suspected cavities.
June 6 will begin a new round of testing for Mason. Intensive Monitoring (an EEG – 30 or so wires attached to his head – while being monitored on video) the room is booked for 5 days, but we expect Mason to give ample information within 24 hours, for the number of seizures he has.
He will also have an MRI hopefully during our stay there, as well.
The Dr will also be investigating chromosome deficiencies.
After all that, the information will indicate if he is a candidate for brain surgery. A different kind than we looked into a few years ago. We will be considering Corpus Callosotomy, which would separate the communication between the left and right brain. There is an 80% chance of eliminating or greatly reducing Mason’s drop seizures, which he has 2 – 5 of each day. Currently he wears a helmet nearly all the time.
That’s all the basic information of what’s going on here.
It has not been an easy time lately in general with the seizures on the rise, as well as the additional emergency issues and preparing for future emergencies. I’m tired from what has been going on (although a short visit from my mom, new step-dad, and former neighbors in the middle of all this was a perk!) an get tired thinking about what is coming up, never mind all the unknown worries. Although I know that all of it is in the control of our Heavenly Father, and that knowledge does not sway at all, it is emotionally and physically draining.
I just ask that you will remember us often in your prayers often, especially over the next couple of months. I’ll keep you up to date on what is going on.
Thanks, love Shirley
I just want to send out a quick note to let you know what’s been happening.
On Thursday night, May 5, Mason started having a seizure at supper time, and it kept going on, - not eating, staring, blinking, drooling etc. After a few minutes, I felt his forehead and noticed it was warm. I gave him Tylenol, he continued the seizure. His fever kept going up slowly. He seemed to have moments where it looked like it was ending. After a while, I phoned the neurologist on call at Childrens Hospital and he recommended that we call an ambulance, so we did. Because this was something we had not experienced before, and we didn’t want to wait at the ER, and we did not know what could happen between home and the hospital, the ambulance was the right choice. We got in very quickly. They put a saline IV in and eventually the fluids and another dose of Tylenol finally started to bring Mason’s temperature down. finally he fell asleep at 11 pm. (the seizure kept him awake). This is called non-convulsive status epilepticus. The definition is a seizure that does not stop. Mason’s lasted for 5 hours. He slept a lot the next day.
After talking to the nurse and doctor over the next few days, they called Mason in for the following Wednesday to train me on a rectally administered drug to stop the seizures at home. Normally Valium or Ativan (for you nurses out there) are used, but they don’t work on Mason. We don’t know if this one would either, but we’ll try.
Next week I’ll be training the teachers and TA’s at school in what to look for and when to call me or an ambulance. We have something in place already, but not for this type of seizure.
Tomorrow morning, Friday, Mason will be in the local hospital for dental work. He won’t let the dentist in, so he will be put to sleep for cleaning and suspected cavities.
June 6 will begin a new round of testing for Mason. Intensive Monitoring (an EEG – 30 or so wires attached to his head – while being monitored on video) the room is booked for 5 days, but we expect Mason to give ample information within 24 hours, for the number of seizures he has.
He will also have an MRI hopefully during our stay there, as well.
The Dr will also be investigating chromosome deficiencies.
After all that, the information will indicate if he is a candidate for brain surgery. A different kind than we looked into a few years ago. We will be considering Corpus Callosotomy, which would separate the communication between the left and right brain. There is an 80% chance of eliminating or greatly reducing Mason’s drop seizures, which he has 2 – 5 of each day. Currently he wears a helmet nearly all the time.
That’s all the basic information of what’s going on here.
It has not been an easy time lately in general with the seizures on the rise, as well as the additional emergency issues and preparing for future emergencies. I’m tired from what has been going on (although a short visit from my mom, new step-dad, and former neighbors in the middle of all this was a perk!) an get tired thinking about what is coming up, never mind all the unknown worries. Although I know that all of it is in the control of our Heavenly Father, and that knowledge does not sway at all, it is emotionally and physically draining.
I just ask that you will remember us often in your prayers often, especially over the next couple of months. I’ll keep you up to date on what is going on.
Thanks, love Shirley
Tuesday, April 05, 2005
Celebrate with a Banquet!!!
Hello praying friends and family
I was going to sit down and let you know about a very important prayer request. But God answered it today. So now it's time to celebrate!!! I am feeling very excited at this moment. Here's the story:
I have been trying to get extra Teacher Assistant time for Mason at school. He has only been allocated 2.5 hours and he is there all day, so that means time has to get pulled from other kids for safety reasons. Although he does have someone near him all the time, 2/3 of the day he and other children share this person. Sometimes there are only a couple of adults in the special ed room, which does not insure that someone is near Mason. As he is having between 8 and 13 seizures per day, he needs someone right there for his safety. Getting extra TA time at this time of year is nearly non-existent. So I knew that getting this would need divine intervention.
The first miracle was finally (after weeks of trying) getting an appointment with the person at the school district, which is slated for this Thursday, April 7. Well that person went to our school yesterday (Monday), and the special ed teacher was told Mason would get one more hour per day, starting today. This is still not full one on one, but will make the end of the day
a lot more manageable and give a little more attention to the other students who also need TA time. Can you imagine getting 7 or so children with special needs ready at the end of the day to go home? I find it exhausting with one!!
And, Mason will get the full time amount for next year!! 5.5 hours. Yeah!!!!!! The meeting is still on for Thursday, but she doesn't know that I know.
Another surprise we got last week, and I need more details yet, is some one time only unexpected funding through Mason's social worker. It is designated as behavioral intervention. There is a contract with an organization that will analyze his behavior and figure out strategies to work with him.
So, wow! Isn't that exciting?? God tends to do the unexpected. And to answer this prayers early, well, that's unexpected!
So some of this very thrilling news came on a very difficult day. Yesterday morning Mason had a 45 minute seizure before school. It consisted of two seizure types, blinking, and myoclonic jerks randomly throughout that time. These happen several times per day, but not often that they last that long. During this time he smashed his chin on the bathroom sink so hard that he
has a big scrape on the bottom of in. I heard the smack and it sounded awful. I was only an inch away from him and could not prevent it. That jerk came on so suddenly. The duration of this seizure made us miss the bus, so I drove the kids to school. When I got there, there was a van
blocking the handicap parking spot, I showed the woman my handicap pass, and she refused to move. She ended up moving back a foot or so, but not nearly enough space for me to get through. Then she took her child in to the school. This is also a drop off only lane. So I sat there waiting in shock and disbelief. When she finally came back, and left, I pulled in and burst
into tears. I had to go into the school that way. Beat red, face wet (I couldn't stop crying, nor could I wipe my tears for holding onto Mason and his stuff). someone asked me if I went and talked to her. No. I was actually speechless, believe it or not. That's probably a built in
mechanism that kept me from tearing a strip off her. I was a smidge angry.
Then at the end of the day, Mason had a strong Tonic seizure (stiff for 45 seconds) where he has difficulty breathing, smashed his head on the computer where he was sitting. Poor kid. I picked him up at school, where he was still groggy half an hour later from it.
Several weeks ago he also started having Tonic Clonic seizures. (Grand Mal) So now he has five different types on a regular basis We continue to mess around with his meds. He may have a day or two here and there that go down to 6 maybe, but medically he is not in a good place right now. His behavior was extremely bad a couple of months ago. Very hyper. And generally difficult. So much work. That has been easing up, and I actually enjoyed him over spring break! Christmas was that last time that was possible. He is still a lot of work, but does have longer periods where he will play well. (it was down to about 20 seconds attention span to play, for several months)
a wonderful husband, special daughters, and a cheerful-in-spite-of-it-all
son. Add to that all our friends and family supporting us like this.
Blessed be the name of the Lord!!!
I was going to sit down and let you know about a very important prayer request. But God answered it today. So now it's time to celebrate!!! I am feeling very excited at this moment. Here's the story:
I have been trying to get extra Teacher Assistant time for Mason at school. He has only been allocated 2.5 hours and he is there all day, so that means time has to get pulled from other kids for safety reasons. Although he does have someone near him all the time, 2/3 of the day he and other children share this person. Sometimes there are only a couple of adults in the special ed room, which does not insure that someone is near Mason. As he is having between 8 and 13 seizures per day, he needs someone right there for his safety. Getting extra TA time at this time of year is nearly non-existent. So I knew that getting this would need divine intervention.
The first miracle was finally (after weeks of trying) getting an appointment with the person at the school district, which is slated for this Thursday, April 7. Well that person went to our school yesterday (Monday), and the special ed teacher was told Mason would get one more hour per day, starting today. This is still not full one on one, but will make the end of the day
a lot more manageable and give a little more attention to the other students who also need TA time. Can you imagine getting 7 or so children with special needs ready at the end of the day to go home? I find it exhausting with one!!
And, Mason will get the full time amount for next year!! 5.5 hours. Yeah!!!!!! The meeting is still on for Thursday, but she doesn't know that I know.
Another surprise we got last week, and I need more details yet, is some one time only unexpected funding through Mason's social worker. It is designated as behavioral intervention. There is a contract with an organization that will analyze his behavior and figure out strategies to work with him.
So, wow! Isn't that exciting?? God tends to do the unexpected. And to answer this prayers early, well, that's unexpected!
So some of this very thrilling news came on a very difficult day. Yesterday morning Mason had a 45 minute seizure before school. It consisted of two seizure types, blinking, and myoclonic jerks randomly throughout that time. These happen several times per day, but not often that they last that long. During this time he smashed his chin on the bathroom sink so hard that he
has a big scrape on the bottom of in. I heard the smack and it sounded awful. I was only an inch away from him and could not prevent it. That jerk came on so suddenly. The duration of this seizure made us miss the bus, so I drove the kids to school. When I got there, there was a van
blocking the handicap parking spot, I showed the woman my handicap pass, and she refused to move. She ended up moving back a foot or so, but not nearly enough space for me to get through. Then she took her child in to the school. This is also a drop off only lane. So I sat there waiting in shock and disbelief. When she finally came back, and left, I pulled in and burst
into tears. I had to go into the school that way. Beat red, face wet (I couldn't stop crying, nor could I wipe my tears for holding onto Mason and his stuff). someone asked me if I went and talked to her. No. I was actually speechless, believe it or not. That's probably a built in
mechanism that kept me from tearing a strip off her. I was a smidge angry.
Then at the end of the day, Mason had a strong Tonic seizure (stiff for 45 seconds) where he has difficulty breathing, smashed his head on the computer where he was sitting. Poor kid. I picked him up at school, where he was still groggy half an hour later from it.
Several weeks ago he also started having Tonic Clonic seizures. (Grand Mal) So now he has five different types on a regular basis We continue to mess around with his meds. He may have a day or two here and there that go down to 6 maybe, but medically he is not in a good place right now. His behavior was extremely bad a couple of months ago. Very hyper. And generally difficult. So much work. That has been easing up, and I actually enjoyed him over spring break! Christmas was that last time that was possible. He is still a lot of work, but does have longer periods where he will play well. (it was down to about 20 seconds attention span to play, for several months)
If you are interested in learning more about Mason's type of Epilepsy:
http://www.epilepsy.com/epilepsy/epilepsy_lennoxgastaut.html
What I keep finding interesting over the years, is that even though this medical problem has not gone away, usually in those darkest hours, there is an amazing, unexpected banquet that comes before me. Cool, eh?
Even though I walk through the valley of the shadow of death, I will fear no evil,for you are with me; your rod and your staff, they comfort me. You prepare a table before me in the presence of my enemies. Psalm 23
a wonderful husband, special daughters, and a cheerful-in-spite-of-it-all
son. Add to that all our friends and family supporting us like this.
Blessed be the name of the Lord!!!
Tuesday, February 15, 2005
Hyper Kid
Mason is driving me CRAZY!!
He went off Lamictal last week and has kicked into hyper active!! When he comes home from school, it’s like he shoots out of a cannon!!!! Even though he was on a low dose, it must have been more sedating than I thought. I started him on Keppra (at bedtime) a few days later, and he is sleeping extremely well at night. Either from the sedation of it, or it is reducing the night seizures. Not sure. I will know more next weekend when he starts a morning dose as well. Seizures are at 7 or 9 per day right now. But a happy kid as always!!
He went off Lamictal last week and has kicked into hyper active!! When he comes home from school, it’s like he shoots out of a cannon!!!! Even though he was on a low dose, it must have been more sedating than I thought. I started him on Keppra (at bedtime) a few days later, and he is sleeping extremely well at night. Either from the sedation of it, or it is reducing the night seizures. Not sure. I will know more next weekend when he starts a morning dose as well. Seizures are at 7 or 9 per day right now. But a happy kid as always!!
Monday, January 03, 2005
Computer Games
The tiny little steps of progress with Mason are always huge events to write about. So that's what I'm about to do.
First the background ~ Mason has learned to use the computer at school. He can easily make his way around Reader Rabbit Toddler, a program for ages 1 - 3. So we set up our old slow computer for him at home over Christmas. He has been playing on it off and on during the day. First thing, he will get one of the dining chairs and bring it to the desk. Next he gets a second one for me or another person to sit on. He likes having someone next to him sometimes.
Yesterday, I had rolled the desk (on castors) into our bedroom, thinking that Mason could go a whole morning without the computer. After breakfast, Mason went a got a chair and put it in front of where the computer normally sits. Then he got the second one and placed it beside the spot the computer normally sits. Then he took my hand and plunked me down in the guest chair. Then he stood and looked at the blank wall where the computer should be. I said "no computer" and he began to cry. He followed me as I walked past the front door, then lay down on the floor to cry some more. I said, once again, "no computer". He cried a bit more, then suddenly stopped crying, looked directly at me and clearly said," La la?" That's his word for computer. How could I say no again after that?
The hugeness of the event is his clear verbal communication. Because his speech is so extremely limited, his communication lies in crying (like a baby does) or taking our hand and leading us to what he wants. I always try to make him verbalize his request, even though he uses the same one or two generic words in his request. But this is the first time he verbalized a request without being promted first.
A very exciting day for us! It's so neat to see his brain working and thinking!
First the background ~ Mason has learned to use the computer at school. He can easily make his way around Reader Rabbit Toddler, a program for ages 1 - 3. So we set up our old slow computer for him at home over Christmas. He has been playing on it off and on during the day. First thing, he will get one of the dining chairs and bring it to the desk. Next he gets a second one for me or another person to sit on. He likes having someone next to him sometimes.
Yesterday, I had rolled the desk (on castors) into our bedroom, thinking that Mason could go a whole morning without the computer. After breakfast, Mason went a got a chair and put it in front of where the computer normally sits. Then he got the second one and placed it beside the spot the computer normally sits. Then he took my hand and plunked me down in the guest chair. Then he stood and looked at the blank wall where the computer should be. I said "no computer" and he began to cry. He followed me as I walked past the front door, then lay down on the floor to cry some more. I said, once again, "no computer". He cried a bit more, then suddenly stopped crying, looked directly at me and clearly said," La la?" That's his word for computer. How could I say no again after that?
The hugeness of the event is his clear verbal communication. Because his speech is so extremely limited, his communication lies in crying (like a baby does) or taking our hand and leading us to what he wants. I always try to make him verbalize his request, even though he uses the same one or two generic words in his request. But this is the first time he verbalized a request without being promted first.
A very exciting day for us! It's so neat to see his brain working and thinking!
New Year Update
Happy New Year!!
We have kept extremely low key over the holidays this year. It has been very relaxing after a busy fall. School kicks in again in two days, along with soccer, Oasis (women’s bible study and worship at our church Wednesday mornings), and anything else that may show up!
Mason has been doing extremely well going off the diet. His seizures have come down a bit. So he is having between 5 and 8 per day right now. His behavior has improved dramatically! He is very happy all day, which is a surprise, because he has been at home most of the time, other than a couple of times to Grandpa and Grandma’s home. he has also been playing Reader Rabbit Toddler on the computer. We hooked up an old computer for Mason, and it’s amazing how well he knows what to do!! The program is made for kids ages 1 – 3. Mason’s development lies between ages 1 – 2. My niece just turned two, and it is amazing how alike Mason and Ava are in many ways.
Regarding food, Mason had pizza for the first time tonight. He’s had a couple of Ritz crackers in the last two days, otherwise no breads yet. He is still mostly having foods that are low carb, as listed on the ketogenic diet, but quantities are not limited. No cream or oil, No weighing, no worrying that he might pick up something and eat it that he’s not allowed. After everything has been so controlled for six months it has felt quite strange having freedom.
Over all, this has been a wonderful Christmas! (in spite of the cough I’ve had since November as well as a head cold over Christmas, a case of head lice on one child of ours, and just plain being tired)
Thank you for your past and continued prayers!
May God richly bless you with His peace this year!!!
Love Shirley
We have kept extremely low key over the holidays this year. It has been very relaxing after a busy fall. School kicks in again in two days, along with soccer, Oasis (women’s bible study and worship at our church Wednesday mornings), and anything else that may show up!
Mason has been doing extremely well going off the diet. His seizures have come down a bit. So he is having between 5 and 8 per day right now. His behavior has improved dramatically! He is very happy all day, which is a surprise, because he has been at home most of the time, other than a couple of times to Grandpa and Grandma’s home. he has also been playing Reader Rabbit Toddler on the computer. We hooked up an old computer for Mason, and it’s amazing how well he knows what to do!! The program is made for kids ages 1 – 3. Mason’s development lies between ages 1 – 2. My niece just turned two, and it is amazing how alike Mason and Ava are in many ways.
Regarding food, Mason had pizza for the first time tonight. He’s had a couple of Ritz crackers in the last two days, otherwise no breads yet. He is still mostly having foods that are low carb, as listed on the ketogenic diet, but quantities are not limited. No cream or oil, No weighing, no worrying that he might pick up something and eat it that he’s not allowed. After everything has been so controlled for six months it has felt quite strange having freedom.
Over all, this has been a wonderful Christmas! (in spite of the cough I’ve had since November as well as a head cold over Christmas, a case of head lice on one child of ours, and just plain being tired)
Thank you for your past and continued prayers!
May God richly bless you with His peace this year!!!
Love Shirley
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