Friday, November 14, 2008
Wednesday, November 12, 2008
20,000
What comes to mind we see the number 20,000? Dollars, a small city, the cost of some kind of new car, ...leagues under the sea, the cost of a house ... a very long time ago. None-the-less, it's a big number.
This week, this number reminds me of God's Faithfulness. I did something I have only ever done once before, many years ago: I estimated the number of seizures Mason has had in the past eight years. You may have guessed it by now... Twenty thousand. Those are only the ones we see. According to his EEG's, there are plenty happening in his brain that we don't see. It overwhelmed me the other day, how amazingly God has been there all along. Yes it's been tough, excruciating at times, but we, as a family, have not only survived, but, we are balanced and enjoy life! (Ok, not everyone thinks I'm balanced)
This week, this number reminds me of God's Faithfulness. I did something I have only ever done once before, many years ago: I estimated the number of seizures Mason has had in the past eight years. You may have guessed it by now... Twenty thousand. Those are only the ones we see. According to his EEG's, there are plenty happening in his brain that we don't see. It overwhelmed me the other day, how amazingly God has been there all along. Yes it's been tough, excruciating at times, but we, as a family, have not only survived, but, we are balanced and enjoy life! (Ok, not everyone thinks I'm balanced)
Sunday, November 09, 2008
What drives every parent to near insanity? : a child that does not stop saying "no". Well, right now Mason says "no" constantly. Only, he is not doing it out of defiance. He has developed an unusual side effect from his medication. Saying "no". It is a Tourette's Sydndrome type of tic, although Mason does not have TS.
So he says "no" every few seconds. The trouble is that most of the time I don't know if he is actually saying "no", or if it's the tic! A lot of confusion...
This also happened nearly two years ago when we went up on this medication. Only it was just a grunt. It took a couple of months to go away then. Hopefully this, too, is short term!
So he says "no" every few seconds. The trouble is that most of the time I don't know if he is actually saying "no", or if it's the tic! A lot of confusion...
This also happened nearly two years ago when we went up on this medication. Only it was just a grunt. It took a couple of months to go away then. Hopefully this, too, is short term!
Wednesday, November 05, 2008
Doctors, Doctors, Doctors.
Well, the dust is settling after a number of issues arose for Mason. Here are the results of the doctors' appointments Mason had:
~ Family Doctor: to get a referral to the pediatrician.
~ Pediatrician: Saw him for the chronic diarrhea Mason has. We went for a blood test, which had me holding Mason on my lap, plus four technicians. One held his kicking legs, one held his fighting arm, another poked the needle in his blood vein and the last one blew bubbles! Not so fun. But he did leave with a wave and a smile and a bunch of stickers! We have not heard back about the test results, so that means they were negative for: Crohn's Disease, Celiac Disease (runs in my family), and other stuff. Basically we have no idea why it's going on. He is sensitive to certain foods, so it may be that there is something new he is sensitive to, and we just don't know what yet.
~ Neurologist: Mason was on two medications. We decided to go completely off one of them. Keppra was the one that was causing the hallucinations and aggressive and violent behavior. he has been off that med for a week, and the adverse side effects are now gone. :) He has also joined a study of medications with adverse side effects. Keppra with psychosis is one of the medications on their list. They took his DNA and are looking for genetic markers, that would show a predisposition to the drug, in order to create a national data base; something that is lacking in Canada.
Currently, Mason's seizures have increased in frequency and intensity. Once per night, plus 3 - 5 during the day. Most are a matter of seconds in length, others last anywhere from 15 seconds up to a minute. Right now, it's not a bad trade off for the negative side effects that are now gone!! He is a very happy boy again, with the frequent anger and aggression gone. Just the regular tantrums now!!!
Some really great stuff: Mason has been putting together four word sentences quite intentionally! There are short pauses between each word. " 't doing?" has become "what...are...you...doing?" . You can see his wheels turning as he does this. Some days he is a super jibber jabber -- non-stop chatterbox. Asking lots of questions and telling us everything he sees. Much of these are things he has done in the past, but now he says words slightly clearer, although a lot of it is still difficult to understand if you don't know him.
The thing that amazes me is that here we are,, three years after surgery, and Mason is still learning! I truly, am thankful for each day that I can say this!
~ Family Doctor: to get a referral to the pediatrician.
~ Pediatrician: Saw him for the chronic diarrhea Mason has. We went for a blood test, which had me holding Mason on my lap, plus four technicians. One held his kicking legs, one held his fighting arm, another poked the needle in his blood vein and the last one blew bubbles! Not so fun. But he did leave with a wave and a smile and a bunch of stickers! We have not heard back about the test results, so that means they were negative for: Crohn's Disease, Celiac Disease (runs in my family), and other stuff. Basically we have no idea why it's going on. He is sensitive to certain foods, so it may be that there is something new he is sensitive to, and we just don't know what yet.
~ Neurologist: Mason was on two medications. We decided to go completely off one of them. Keppra was the one that was causing the hallucinations and aggressive and violent behavior. he has been off that med for a week, and the adverse side effects are now gone. :) He has also joined a study of medications with adverse side effects. Keppra with psychosis is one of the medications on their list. They took his DNA and are looking for genetic markers, that would show a predisposition to the drug, in order to create a national data base; something that is lacking in Canada.
Currently, Mason's seizures have increased in frequency and intensity. Once per night, plus 3 - 5 during the day. Most are a matter of seconds in length, others last anywhere from 15 seconds up to a minute. Right now, it's not a bad trade off for the negative side effects that are now gone!! He is a very happy boy again, with the frequent anger and aggression gone. Just the regular tantrums now!!!
Some really great stuff: Mason has been putting together four word sentences quite intentionally! There are short pauses between each word. " 't doing?" has become "what...are...you...doing?" . You can see his wheels turning as he does this. Some days he is a super jibber jabber -- non-stop chatterbox. Asking lots of questions and telling us everything he sees. Much of these are things he has done in the past, but now he says words slightly clearer, although a lot of it is still difficult to understand if you don't know him.
The thing that amazes me is that here we are,, three years after surgery, and Mason is still learning! I truly, am thankful for each day that I can say this!
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