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.
Sunday, September 18, 2005
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
Friday, December 10, 2004
Ketogenic Diet
We went to see Dr. Farrell, the ketogenic diet neurologist today.
The appointment went so smoothly!! But it didn’t happen without your prayers!!
The appointment went so smoothly!! But it didn’t happen without your prayers!!
When we went into the appointment, the Dr. reviewed the seizures, charts and medications, looked up at me and said, “So, what would you like to do next?” I was expecting him to tell me his opinion first then ask me that question! I told him I wanted to go off the diet. It had worked in the beginning, but it has now lost its effectiveness. He said, “OK.”. Simple as that!!
Then he talked about how long to take to come off the diet. I was expecting them to say 2 or 3 months. He said, 2 or 3 weeks. That means Mason will be able to have turkey dinner with us at Christmas!!!!!!!! He won’t be eating cookies and stuff too much then yet.
After that has settled down, we’ll continue going down on meds, as it works.
The Dr. also asked something to the effect of what I’d like to do in the future. So we talked about a couple of things.
So today I felt like I received everything on my wish list, and more! Going off the diet without any opposition from the medical professionals, and doing it quickly. And just in general having increasing input in the direction of what to try in the future.
Although it may seem that we are back at square one again with the seizures, we have did have a short reprieve from the severity of them. As well, we have seen some significant development progress compared to the previous four years, in which there has been very limited advancement. He has become a little more alert and aware of himself and what goes on around him, picked up a few new words, and learned routines (although current tantrum behavior interferes with that).
His current stage of “terrible twos” tantrums and screaming are excruciatingly hard to deal with, yet they are progress in development. ( no I haven’t lost my mind . . . permanently) I believe there was enough of a reprieve from the seizures this summer and fall to allow Mason to move forward into this next phase. A toddler throws tantrums and screaming fits because he is exerting his new awareness of self and will and becoming more aware of his ability to control and make “decisions”. So there, . . . . the terrible two’s are a good thing! The hard thing is that Mason tends to stay in a stage about ten times longer (or more) than a typical child.
So this Christmas, as you sit at the dinner table with your families, remember Mason for just a few seconds - eating foods like turkey, mashed potatoes, gravy, stuffing, corn, and just a taste of a cookie for the first time in half a year. He will not have to eat any butter and oil that day!!
So now I wish you a most wonderful time preparing for Christmas to celebrate the birth of Jesus!
THANK YOU so much for your many prayers, and please continue. The future is still filled with great uncertainty, but God has each day planned for us, and He will prosper us with hope and a future. We have called upon Him, and He HAS answered!!!! Jeremiah 29:11 & 12
Blessed be the Name of the Lord!!!
Love Shirley
Wednesday, December 01, 2004
E-mail updates
I am posting the last three email updates I sent out:
November 9, 2004
Here I am again, asking you for a moment of your time to pray for us. I always have two reasons for sending out these e-mails regarding Mason. One is that so many of you ask about him, I for that I am extremely grateful, so I want to keep you updated. The second is that we need you to call on the Name of the Lord on our behalf. For that I also thank you.
We’re going down that road again. Mason’s seizures have been increasing dramatically in numbers, and in severity. I really feel at a loss for knowing what the next step is. Although there are more medications to experiment with, a positive prognosis is extremely unlikely. Do I sound discouraged? Well, I am, in regards to what is happening with our little boy. I’ll never get used to the emotional roller coaster ride that we go on so regularly.
Yet, I know that my Father is faithful. He is faithful to always be here for us. I choose to say Blessed Be Your Name, Father, Jesus, Holy Spirit.
This is my favorite song:
Blessed be Your name in the land that is plentiful ~ Where Your streams of abundance flow ~ Blessed be Your name ~ And blessed be Your name when I’m found in the desert place ~ Though I walk through the wilderness ~ Blessed be your name ~ Every blessing You pour out I’ll turn back to praise ~ And when the darkness closes in Lord ~ Still I will say ~Blessed be the name of the Lord ~ Blessed be Your name ~ Blessed be the name of the Lord ~ Blessed be Your glorious name ~ Blessed be Your name when the sun’s shining down on me ~ When the world’s “all as it should be” ~ Blessed be Your name ~ And blessed be Your name on the road marked with suffering ~ Though there’s pain in the offering ~ Blessed be Your name ~ You give and take away ~ You give and take away ~ My heart will choose to say ~ Lord, blessed be Your name
Thanks for your prayers, Shirley and Daryl
November 30
Hello,
Just a quick note to let you know where Mason is at right now.
He continues to have between 6 and 9 seizures per day, not including the 1 or 2 each night that I suspect. This is in spite of tweaking his diet and reducing meds a bit. As the seizures increase, his behavior becomes more unmanageable. A lot of screaming, crying and tantrums. He has to leave kindergarten a lot these days – to go into the special ed room – which is a fun room, but not integrated. A matter of a few weeks ago Mason was in the K room nearly the whole morning, doing what the other kids were doing, great focus, following routines and directions extremely well.
Tomorrow, Wednesday, he will be fasting for 24 hours to help the neurologist decide to continue on the diet or begin the process of quitting it.
So while Mason is fasting, will you pray? He knows how to say “amen” so I guess he will be praying and fasting!! J
We will most likely be going in to see the neurologist in December to see what to do next. I have some treatments I want to ask him about.
Pray for God’s wisdom and understanding for me and Daryl, the doctor, nurses, and dietician, who are all involved in the decision process. And for my sanity. The bottom is dropping out from under us again.
I have a most wonderful family. Daryl is so supportive of what I do with Mason, Asia and Sydney are amazingly understanding for their age. Bedtime is usually very easy for Mason, but yesterday he fought it quite hard. When I finally emerged from his room, the girls were standing in the middle of the living room with little grins on. They had cleaned up all the toys, set the chairs straight, etc. The message on the magna-doodle said, “we wanted to help you mommy. Love Asia and Sydney”.
Thanks for your support!!!!!!!!!!!
Shirley
December 1
Thanks for your prayers today!!
Mason did very well with fasting. He did not indicate that he was hungry all day until bedtime, at which time he was finally allowed to eat. During school he was either extremely cranky or extremely happy. No middle ground. He came home around lunch time, had a great nap and was in a great mood for most of the evening. He had five seizures, so still close to normal range, I don’t know yet if we will continue the diet, or if it’s worth a shot to continue a little longer. I don’t mind doing it if I know it’s working, even in part.
There are some of you that forward this on to care groups or others you know. That is great! Enlarge that territory of prayer. Some of you even fasted today along with Mason. WOW! My heart (and eyes) are really touched.
I had to pop in at a store with Mason today and while I pushed him down the isle, he put his hands together up on his forehead said a few “words” then said “amen”. A minute later he ”prayed” a longer prayer, which turned into a song. Although I could not understand a single word, other than amen, God knew. And now, although I don’t understand what is going on, God knows. That is where I rest. That is why I can agree with Job and truly say, Blessed be the Name of the Lord.
Thanks so much for your continued prayers.
Love Shirley
November 9, 2004
Here I am again, asking you for a moment of your time to pray for us. I always have two reasons for sending out these e-mails regarding Mason. One is that so many of you ask about him, I for that I am extremely grateful, so I want to keep you updated. The second is that we need you to call on the Name of the Lord on our behalf. For that I also thank you.
We’re going down that road again. Mason’s seizures have been increasing dramatically in numbers, and in severity. I really feel at a loss for knowing what the next step is. Although there are more medications to experiment with, a positive prognosis is extremely unlikely. Do I sound discouraged? Well, I am, in regards to what is happening with our little boy. I’ll never get used to the emotional roller coaster ride that we go on so regularly.
Yet, I know that my Father is faithful. He is faithful to always be here for us. I choose to say Blessed Be Your Name, Father, Jesus, Holy Spirit.
This is my favorite song:
Blessed be Your name in the land that is plentiful ~ Where Your streams of abundance flow ~ Blessed be Your name ~ And blessed be Your name when I’m found in the desert place ~ Though I walk through the wilderness ~ Blessed be your name ~ Every blessing You pour out I’ll turn back to praise ~ And when the darkness closes in Lord ~ Still I will say ~Blessed be the name of the Lord ~ Blessed be Your name ~ Blessed be the name of the Lord ~ Blessed be Your glorious name ~ Blessed be Your name when the sun’s shining down on me ~ When the world’s “all as it should be” ~ Blessed be Your name ~ And blessed be Your name on the road marked with suffering ~ Though there’s pain in the offering ~ Blessed be Your name ~ You give and take away ~ You give and take away ~ My heart will choose to say ~ Lord, blessed be Your name
Thanks for your prayers, Shirley and Daryl
November 30
Hello,
Just a quick note to let you know where Mason is at right now.
He continues to have between 6 and 9 seizures per day, not including the 1 or 2 each night that I suspect. This is in spite of tweaking his diet and reducing meds a bit. As the seizures increase, his behavior becomes more unmanageable. A lot of screaming, crying and tantrums. He has to leave kindergarten a lot these days – to go into the special ed room – which is a fun room, but not integrated. A matter of a few weeks ago Mason was in the K room nearly the whole morning, doing what the other kids were doing, great focus, following routines and directions extremely well.
Tomorrow, Wednesday, he will be fasting for 24 hours to help the neurologist decide to continue on the diet or begin the process of quitting it.
So while Mason is fasting, will you pray? He knows how to say “amen” so I guess he will be praying and fasting!! J
We will most likely be going in to see the neurologist in December to see what to do next. I have some treatments I want to ask him about.
Pray for God’s wisdom and understanding for me and Daryl, the doctor, nurses, and dietician, who are all involved in the decision process. And for my sanity. The bottom is dropping out from under us again.
I have a most wonderful family. Daryl is so supportive of what I do with Mason, Asia and Sydney are amazingly understanding for their age. Bedtime is usually very easy for Mason, but yesterday he fought it quite hard. When I finally emerged from his room, the girls were standing in the middle of the living room with little grins on. They had cleaned up all the toys, set the chairs straight, etc. The message on the magna-doodle said, “we wanted to help you mommy. Love Asia and Sydney”.
Thanks for your support!!!!!!!!!!!
Shirley
December 1
Thanks for your prayers today!!
Mason did very well with fasting. He did not indicate that he was hungry all day until bedtime, at which time he was finally allowed to eat. During school he was either extremely cranky or extremely happy. No middle ground. He came home around lunch time, had a great nap and was in a great mood for most of the evening. He had five seizures, so still close to normal range, I don’t know yet if we will continue the diet, or if it’s worth a shot to continue a little longer. I don’t mind doing it if I know it’s working, even in part.
There are some of you that forward this on to care groups or others you know. That is great! Enlarge that territory of prayer. Some of you even fasted today along with Mason. WOW! My heart (and eyes) are really touched.
I had to pop in at a store with Mason today and while I pushed him down the isle, he put his hands together up on his forehead said a few “words” then said “amen”. A minute later he ”prayed” a longer prayer, which turned into a song. Although I could not understand a single word, other than amen, God knew. And now, although I don’t understand what is going on, God knows. That is where I rest. That is why I can agree with Job and truly say, Blessed be the Name of the Lord.
Thanks so much for your continued prayers.
Love Shirley
Tuesday, November 09, 2004
Jesus in the Boat
I spoke with my friend Janelle this morning. Her little girl has a severe chronic condition and had taken a very bad turn. My heart broke for her. Then she asked about Mason and she found out that Mason had taken a bad turn as well. (seven seizures in one day, with a dramatic increase in his tonic drop seizures)
To which Janelle responded with "I guess we're in the same boat today."
The next moment she burst into a familiar kids song - "With Jesus in the boat we can smile at the storm, smile at the storm, smile at the storm!"
You have to realize we were two mom's with tears running down our faces when we both burst into laughter.
This day has not been easy. We went into Childrens Hospital in the afternoon to weigh Mason. In the next day or two we will decide if we will restrict his diet yet more, or think about another medication. There really are very few, if any, options left.
Although it looks like another hurricane is comming our way, Jesus is in our boat.
Wednesday, November 03, 2004
More Seizures
Poor little Mason. He has been suffering from a really bad cold. He NEVER gets sick. But now that he is in kindergarten all day, he is exposed to that stuff so much more. The last cold he had was in only one nostril, and lasted only a few days. This one came with a cough, fever, goopy nose, etc. He missed two days of school, one of which he slept most of the day. Back to school today, and what a cranky kid he was!
His seizures have increased again in the last several weeks. In summer he was down to two or three per week. Now he is back at four or so per day. He has three kinds happening right now. Blinking, myoclonic (clusters of short body jerks), and tonic drops (goes completely stiff up to 10 or 20 seconds). They don't come as fast and hard as they did last year.
In spite of the seizures, he is continuation to learn! :-) For the longest time he said a nasally "hang" for thanks. A few weeks ago it turned to "ha gung". In the last few days it's closer to "hang hoo" for thank you. And he says teacher in school! Well, his version of it.
He naps in school, plays outside, spends most of the morning in the kindergarten classroom, sits well at his desk, follows routine well. Going on the bus is a definite highlight!
His seizures have increased again in the last several weeks. In summer he was down to two or three per week. Now he is back at four or so per day. He has three kinds happening right now. Blinking, myoclonic (clusters of short body jerks), and tonic drops (goes completely stiff up to 10 or 20 seconds). They don't come as fast and hard as they did last year.
In spite of the seizures, he is continuation to learn! :-) For the longest time he said a nasally "hang" for thanks. A few weeks ago it turned to "ha gung". In the last few days it's closer to "hang hoo" for thank you. And he says teacher in school! Well, his version of it.
He naps in school, plays outside, spends most of the morning in the kindergarten classroom, sits well at his desk, follows routine well. Going on the bus is a definite highlight!
Saturday, September 18, 2004
Two Buddy's
The two Buddy's are becoming better buds!! (We have called Mason, Buddy since he was a baby causing us confusion now!) Because of Mason's unpredictable behavior, he can at times become too rough with Buddy, causing Buddy to avoid Mason more. Over the last few days that has begun to change. It started off with Mason playing with his squeaky fish. It turns out that nothing gets Buddy more excited than the "squeak". Those two had the time of their life for about twenty minutes taking that thing from each other. Mason howled with laughter, while Buddy jumped and ran around like crazy! After that Buddy has been checking Mason out more. When Mason throws a temper tantrum, Buddy comes over and starts sniffing his head, tickling Mason, quickly causing severe giggles. We are working at teaching Mason how to play with a dog. They have some other similar interests as well. Mason made his way into the garage today, and made a bee-line for the car, opened the door and climbed in. Buddy was right there, too. So there they sat in the back seat, waiting to go bye-bye. I couldn't drag either of them out, so they sat there for a bit. I couldn't find the camera quick enough, but next time (and I'm sure there will be a next time!!!) I find those two in there, I will take a picture!
Tuesday, September 14, 2004
School - day five
Each day is getting better for Mason as he gets used to school. Friday I decided to stay to see if that would lessen his anxiety. (his seizures have been increasing because of the stress) It actually made it worse, so now I cut it quick at the door. A cute little story though . . . we ( me, Mason and his special needsteacher- Ms. S) had been walking down the hall, went into the kindergarten room a bit, then to the water fountain just outside the door. I pressed the button so Mason could drink. It went up his nose a few times which he thought was very funny. After a couple of minutes, I signalled Ms. S to come and press the button. I didn't move, and she stood behind him and pressed the button without him noticing it. Shortly Mason did notice! He grabbed her hand and shoved it back. Grabbed my hand and put it on the button and kept his hand on my hand. He knew what we were up to, and was not going to let us pull the wool over his eyes again!!!
Yesterday he pulled me into the classroom but cried as I left. Apparently he stopped within a minute or two.
Today he made a couple of quick complaining sounds before going into the classroom. Once again he pulled me into the classroom, only this time HE let go of my hand as he stepped through the door!! He did not cry at all!! Very exciting!!
Keep on praying, children of God!!!
Sunday, September 12, 2004
Buddy
After years of saying no to my family, I caved in and now we have a dog. Well, it wasn't exactly caving in, as I was the one who initiated it. Every one who knows me is in shock! Can I tell you the whole story? A few years ago I read about seizure dogs, and decided that that would be a good reason to get a dog. It also had to meet my long list of criteria. Trained, well behaved, not jumping on people, quiet, no shedding, small but tough, maybe a few other things. Recently I read an article in the local newspaper about a man who trains fox terriers for children with certain kinds of special needs for free. I gave him a call, and he brought Buddy over the next day. He seemed to target in on Mason quite quickly. So now we have a dog! This is a very special thing for someone to put all that work and cost into training a dog, to give it away to someone else's child!
Although we could see there was an initial attraction between the boy and the dog, right now Buddy is a little scared of Mason at times. That is because Mason does not behave as a typical child, petting and playing with animals. There will be some work involved in training Mason how to play with Buddy, but I think it is very possible. Especially as the girls get older and more involved with their sports and friends. There are those kinds of things that Mason will not be likely to do much, especially in the next number of years.
Buddy is a great dog. He is very social, will jump straight up in the air, but not onto people, unless by mistake if he is too excited. He loves going for car rides, he went along to Childrens Hospital last week and did great!! He also has Service Animal papers, so we just need to get a vest to that effect and we can take him anywhere. Mason can be kinda rough on Buddy, but really likes him. He does shed a little, but i can deal with that.
SOme of the goals for the future of Buddy with Mason, first off to be companions, guarding Mason from danger, or running off. It would really be great if Buddy would recognize the onset of a seizure, as some dogs are capable of doing.
I look forward to telling you more stories of a boy and his dog!
Although we could see there was an initial attraction between the boy and the dog, right now Buddy is a little scared of Mason at times. That is because Mason does not behave as a typical child, petting and playing with animals. There will be some work involved in training Mason how to play with Buddy, but I think it is very possible. Especially as the girls get older and more involved with their sports and friends. There are those kinds of things that Mason will not be likely to do much, especially in the next number of years.
Buddy is a great dog. He is very social, will jump straight up in the air, but not onto people, unless by mistake if he is too excited. He loves going for car rides, he went along to Childrens Hospital last week and did great!! He also has Service Animal papers, so we just need to get a vest to that effect and we can take him anywhere. Mason can be kinda rough on Buddy, but really likes him. He does shed a little, but i can deal with that.
SOme of the goals for the future of Buddy with Mason, first off to be companions, guarding Mason from danger, or running off. It would really be great if Buddy would recognize the onset of a seizure, as some dogs are capable of doing.
I look forward to telling you more stories of a boy and his dog!
Friday, September 10, 2004
Back to School
Hello! We have discovered an new and easy way to keep you updated on Mason's progress! Previously with Mason's Web ( www.bluesticker.com/mason ) I had to have Daryl post what I wanted, which was a lot of work for him. This, even I can do!!
Well, Mason has started kindergarten. What an adventure! First I need to back track a bit. Last year when he started pre-school, he sailed right into that room, said bye to me and had the time of his life! He has always entered new territory without a look back. Since starting the ketogenic diet, his seizures have been reduced a lot and that has also increased his alertness, and awareness of his surroundings. He is saying more words, and just plain progressing at a slightly faster speed. That is a fabulous thing!! The other side, is that with being more aware of his surroundings, separation anxiety has kicked in . . . big time. Two weeks before school!!
Anyway, the first few days have been quite rocky for Mason. He screams with everything he's got initially, but does settle down shortly after I leave and has a good time. When I pick him up, he gives me the biggest hugs of his lifetime! His seizures have increased because of all this anxiety, but his nurse has recommended to continue as we are and hopefully the seizures settle down quickly and Mason gets over the separation soon. The teachers involved with Mason at school are great at accommodating his needs. I know he'll do fine in a little while. Me too! Yesterday he cried a total of less than 5 minutes, I was told. My reply:" So, I cried more than he did!" Apparently kindergarten moms are allowed to do that. Especially if it is their last child.
He will be in the all day kindergarten program. The plan is for him to be in the kindergarten classroom in the morning and the resource room (special needs) for lunch and the afternoon. So we will work into that. So far he is there for about two and a half hours.
With this as my first official entry I shall say good night, and look up other stuff I have written about Mason and post it in the near future. Bye!
Well, Mason has started kindergarten. What an adventure! First I need to back track a bit. Last year when he started pre-school, he sailed right into that room, said bye to me and had the time of his life! He has always entered new territory without a look back. Since starting the ketogenic diet, his seizures have been reduced a lot and that has also increased his alertness, and awareness of his surroundings. He is saying more words, and just plain progressing at a slightly faster speed. That is a fabulous thing!! The other side, is that with being more aware of his surroundings, separation anxiety has kicked in . . . big time. Two weeks before school!!
Anyway, the first few days have been quite rocky for Mason. He screams with everything he's got initially, but does settle down shortly after I leave and has a good time. When I pick him up, he gives me the biggest hugs of his lifetime! His seizures have increased because of all this anxiety, but his nurse has recommended to continue as we are and hopefully the seizures settle down quickly and Mason gets over the separation soon. The teachers involved with Mason at school are great at accommodating his needs. I know he'll do fine in a little while. Me too! Yesterday he cried a total of less than 5 minutes, I was told. My reply:" So, I cried more than he did!" Apparently kindergarten moms are allowed to do that. Especially if it is their last child.
He will be in the all day kindergarten program. The plan is for him to be in the kindergarten classroom in the morning and the resource room (special needs) for lunch and the afternoon. So we will work into that. So far he is there for about two and a half hours.
With this as my first official entry I shall say good night, and look up other stuff I have written about Mason and post it in the near future. Bye!
Tuesday, June 22, 2004
Mason on the ketogenic diet
We have completed the second day of the ketogenic diet. We have to be at Childrens Hospital four days in a row for most of the day for teaching the parents and watching Mason closely as his body adjusts to the changes. He fasted for part of the first day, and had a special drink (tiny amount) for lunch and later for supper at home. The ratio of his food is about 90% fat with the remaining 10% consisting of a combination of carbohydrates and protein. He will have whipping cream, butter, and oil in each meal, along with small amounts of certain veggies and meat, egg, or cheese. Everything has to be weighed to the .1 gram. For example I prepared a beaten egg for him for supper. It weighed 47.4 grams, and he could have 41 grams, so I discarded 6.4 grams of the egg. Along with 33 grams of green pepper(about 1/3 cup), 11 grams of butter (about 1 tablespoon), 10 grams of canola oil (about one tablespoon), and 25 grams of whipping cream (36% had to be special ordered). Part of the whipping cream went into the "omelet" while the rest was mixed with a measured amount of water (fluids are limited, although a fair amount) a couple of drops of stevia sweetener (only certain brands allowed) and a drop of vanilla for flavor. I scraped the oil and butter with a rubber spatula from his plate at the end of his meal to feed it to him, to make sure he got the entire amount. It took me a long time to prepare it!! I have to test Mason's blood sugars for a few days (it's really good so far), as well as check hi urine for ketosis many times per day initially, then morning and bedtime on a regular basis after that. He reached the right level of ketosis this morning (ahead of schedule) so that he could have a full, real keto meal for supper. Otherwise he would not have been able to eat until tomorrow. The quick version, this diet tricks the body into thinking that it is starving, causing ketosis - a chemical produced when fat us burned for fuel. For unknown reasons, this seems to help some children with difficult to control seizures. If you are really curious there is more information at the following website. http://www.epilepsyfoundation.org/answerplace/Medical/treatment/diet/
A ketogenic story: http://www.jhu.edu/~jhumag/495web/fat.html
What a blessing it is that we have wonderful friends to take Asia and Sydney after school, friends and family to come along to the hospital, and others who are bringing meals. Today after I got home, I thought, "hey I would have been able to make supper, no problem!" then when Daryl and I didn't get to eat until 7 pm, I realized, no, I couldn't have done it today. So the combination of help and prayer, cooks up just the right concoction for what God knows we need!! As a 'refining fire' in our lives, this experience will require me to become extremely organized and structured. Eeeeeeeeeek!!!!!!!! My personality is the opposite, laid back and spontaneous. Mason will have to eat at certain times, and the rest of us will have to be very careful in what we eat around him, including food preparation. It will be a lot of work yet, but worth it in the end when we find out one way or another if this is the answer. Thanks again for your thoughts and prayers!!!!! Shirley
A ketogenic story: http://www.jhu.edu/~jhumag/495web/fat.html
What a blessing it is that we have wonderful friends to take Asia and Sydney after school, friends and family to come along to the hospital, and others who are bringing meals. Today after I got home, I thought, "hey I would have been able to make supper, no problem!" then when Daryl and I didn't get to eat until 7 pm, I realized, no, I couldn't have done it today. So the combination of help and prayer, cooks up just the right concoction for what God knows we need!! As a 'refining fire' in our lives, this experience will require me to become extremely organized and structured. Eeeeeeeeeek!!!!!!!! My personality is the opposite, laid back and spontaneous. Mason will have to eat at certain times, and the rest of us will have to be very careful in what we eat around him, including food preparation. It will be a lot of work yet, but worth it in the end when we find out one way or another if this is the answer. Thanks again for your thoughts and prayers!!!!! Shirley
Sunday, April 11, 2004
April 2004
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.
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.
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!
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