Just wanted to let you all know that nothing much has changed. We are trying to keep track of how many seizures occur throughout the day, but I think it's a fairly inaccurate account. We've had days in which we witnessed 25 and days in which we witnessed 40. I think more likely he's having about 50; we just don't catch them all. Today is the first day of taking a full dose of the new medication, Topamax. Dr. Burris said that we should be able to notice a change by the third day of the full dose, so we are still hopeful. I keep thinking that I am seeing less, but when I add up the daily totals, there are still high numbers.
I'll let you know as the days pass. One week from today will be the deciding day, regarding the success of the Topamax and the clear or cancellation of surgery.
Thanks for your prayers; we would be at a total loss without God.
Monday, June 9, 2008
Tuesday, June 3, 2008
Not Exactly According to Plan
Things worked out yesterday, but they didn't go quite as I had hoped or expected. Lucas did not sleep for the EEG nor did he have a seizure, but the technician, a very nice woman with beautiful silvery-white curls and a fun-loving gentility, said that she got some good results. As soon as the test was complete and she began removing the gooey leads, he had two seizures. She didn't realize until I said something but they had passed before she could see them happening.
We then met with the neurologist, Dr. Burris. He also did not witness any seizures. (I sometimes feel like I am the only one who can see them, like I've been given a supernatural seizure-detecting gift, or perhaps I am being tortured by my mind and require some intense psychotherapy! - Just kidding. Marc and my dad have seen them too; I am not alone in my madness.)
Dr. Burris explained that there are (for simplicity and appropriate application in this case) two kinds of seizures: prolonged and brief. When Lucas first had seizures they were very lengthy, the first lasting about 1 1/2 hours. The last round of seizures, we have now opted to consider clusters of brief seizures and this round, individual brief seizures.
The medication that Lucas takes to prevent seizures targets the prolonged type of seizures. We are now beginning a trial period of a new medication that should treat both the short and the long. It is called Topamax. We will give 1/2 dose for one week and then full dose the next. We will continue giving his Tegretol (regular med he's been taking since the beginning of the seizures) three times a day as well as Klonopin twice a day (we give this as long as he is having more than one seizure a day). If at the end of the 2 week trial period, we have not seen excellent results, we will cancel his surgery and consider a new trial of a different medication. If there are good results, we will begin to wean off of the Tegretol and rely solely on the Topamax.
We are, of course, hopeful that this medicine will be effective and that we will be able to press on as planned. We know that God knows best and if we are again to postpone his surgery then that is all right with us. We want the best for him and don't want to rush into anything. As much as we may distaste our frequent state of limbo we are becoming impressively flexible, not quite up to par as the famous Chinese Acrobats, but if we continue as we have, I think we'll get there and you can see us touring in a city near you. :)
Please continue to pray for our sweet prince. One concern is ensuring he actually consumes the medicine as it is in tablet form and must be crushed and added to food. As is obvious in his pictures, much of his meal typically ends up on his bib (and face and hair and tray and mommy) instead of in his tummy. His first dose last night went over well. We know and trust it will work out. It always does. :)
Thanks and blessings to you all. We'll keep you posted!
We then met with the neurologist, Dr. Burris. He also did not witness any seizures. (I sometimes feel like I am the only one who can see them, like I've been given a supernatural seizure-detecting gift, or perhaps I am being tortured by my mind and require some intense psychotherapy! - Just kidding. Marc and my dad have seen them too; I am not alone in my madness.)
Dr. Burris explained that there are (for simplicity and appropriate application in this case) two kinds of seizures: prolonged and brief. When Lucas first had seizures they were very lengthy, the first lasting about 1 1/2 hours. The last round of seizures, we have now opted to consider clusters of brief seizures and this round, individual brief seizures.
The medication that Lucas takes to prevent seizures targets the prolonged type of seizures. We are now beginning a trial period of a new medication that should treat both the short and the long. It is called Topamax. We will give 1/2 dose for one week and then full dose the next. We will continue giving his Tegretol (regular med he's been taking since the beginning of the seizures) three times a day as well as Klonopin twice a day (we give this as long as he is having more than one seizure a day). If at the end of the 2 week trial period, we have not seen excellent results, we will cancel his surgery and consider a new trial of a different medication. If there are good results, we will begin to wean off of the Tegretol and rely solely on the Topamax.
We are, of course, hopeful that this medicine will be effective and that we will be able to press on as planned. We know that God knows best and if we are again to postpone his surgery then that is all right with us. We want the best for him and don't want to rush into anything. As much as we may distaste our frequent state of limbo we are becoming impressively flexible, not quite up to par as the famous Chinese Acrobats, but if we continue as we have, I think we'll get there and you can see us touring in a city near you. :)
Please continue to pray for our sweet prince. One concern is ensuring he actually consumes the medicine as it is in tablet form and must be crushed and added to food. As is obvious in his pictures, much of his meal typically ends up on his bib (and face and hair and tray and mommy) instead of in his tummy. His first dose last night went over well. We know and trust it will work out. It always does. :)
Thanks and blessings to you all. We'll keep you posted!
Friday, May 30, 2008
EEGs Over Easy
Hopefully, anyway. That's how I like them. I would prefer to not have them at all, but if we have to, then that's the way to go.
I noticed last Wednesday, but wasn't sure I was noticing anything. Thursday I was sure I saw something, but no one else (even the pediatrician while examining him for his 12 month check) seemed to notice. He was super irritable, more than he's ever been Thursday and Friday from the shots he got at the doctor's office. When he had ibuprofen in his system, I didn't seem to notice so much, so I continued to brush it off. Over the weekend, however I noticed more and finally said something to Marc to see if he could spot anything. Sure enough, he did. Seizures.
I called the neurologist and explained what we are witnessing: super brief flashes of uncontrolled movement. A quick turn of the head to the left, maybe a right leg or arm movement to coincide, only lasting less than 4 seconds. Almost before there's a sign to look, there's nothing to see.
It mostly seems to occur after waking, immediately and up to 30 minutes after. There have been, however, some that happen at other, random points, while crying, playing, maybe tired, but having been awake for some time. Dr. Burris, Lucas' neurologist thinks that he might be having a new kind of seizure. If it is what he is thinking it might be, then the medication Lucas takes to prevent seizures needs to be changed because it is ineffective.
Monday, the 2nd of June, we will go in to Dr. Burris' office for an EEG. After attaching all the sensors, Lucas will need to sleep for a while. Then he will be awakened and likely stimulated with flashing lights, strobe style. When the EEG is complete, we will meet with Dr. Burris and discuss the results and where to go from here.
Please join us in praying for the test to go over easy, for Lucas' sleeping/napping to work well with what is needed for the test. Also, Lucas' hypospadias follow up/strabismus (lazy eye) corrective surgery is scheduled for June 27th. The last time we had a surgery scheduled for his eyes, it was canceled by the anesthesiologist because he was having "uncontrolled" seizures. If we do not get things "under control" by June 26th, the surgery will likely be canceled again. We would really prefer this not be the case. We have 2 different doctors' schedules to coordinate for the surgery so Lucas only has to be put under once, and we feel like this is a good time.
God's will be done. We know He has Lucas' best interest in mind and we trust Him, but He still says to ask. As little children without hesitation ask their daddy for things, so are we to ask of Him.
We'll keep you posted.
Blessings.
I noticed last Wednesday, but wasn't sure I was noticing anything. Thursday I was sure I saw something, but no one else (even the pediatrician while examining him for his 12 month check) seemed to notice. He was super irritable, more than he's ever been Thursday and Friday from the shots he got at the doctor's office. When he had ibuprofen in his system, I didn't seem to notice so much, so I continued to brush it off. Over the weekend, however I noticed more and finally said something to Marc to see if he could spot anything. Sure enough, he did. Seizures.
I called the neurologist and explained what we are witnessing: super brief flashes of uncontrolled movement. A quick turn of the head to the left, maybe a right leg or arm movement to coincide, only lasting less than 4 seconds. Almost before there's a sign to look, there's nothing to see.
It mostly seems to occur after waking, immediately and up to 30 minutes after. There have been, however, some that happen at other, random points, while crying, playing, maybe tired, but having been awake for some time. Dr. Burris, Lucas' neurologist thinks that he might be having a new kind of seizure. If it is what he is thinking it might be, then the medication Lucas takes to prevent seizures needs to be changed because it is ineffective.
Monday, the 2nd of June, we will go in to Dr. Burris' office for an EEG. After attaching all the sensors, Lucas will need to sleep for a while. Then he will be awakened and likely stimulated with flashing lights, strobe style. When the EEG is complete, we will meet with Dr. Burris and discuss the results and where to go from here.
Please join us in praying for the test to go over easy, for Lucas' sleeping/napping to work well with what is needed for the test. Also, Lucas' hypospadias follow up/strabismus (lazy eye) corrective surgery is scheduled for June 27th. The last time we had a surgery scheduled for his eyes, it was canceled by the anesthesiologist because he was having "uncontrolled" seizures. If we do not get things "under control" by June 26th, the surgery will likely be canceled again. We would really prefer this not be the case. We have 2 different doctors' schedules to coordinate for the surgery so Lucas only has to be put under once, and we feel like this is a good time.
God's will be done. We know He has Lucas' best interest in mind and we trust Him, but He still says to ask. As little children without hesitation ask their daddy for things, so are we to ask of Him.
We'll keep you posted.
Blessings.
Thursday, May 22, 2008
On to the next
The birthday bash is past. There is only one more swim class left. The one year appointments are almost complete. May is coming to a close. It's been a busy month. Lots of doctors, all say Lucas is doing marvelously (as if that's news to us), beloved out of town visitors, swimming every week, a couple of shots, and a few teeth on the brink of break through. We've still got about 9 more days in the month and already I'm exhausted just thinking of all Lucas has already endured in May. He's such a trooper. He takes it mostly joyfully too; some thing easier, like having fun with family, and other things like the most courageous boy I know such as the two shots he got this morning.
Not sure what all next month month will hold other than surgery on the 27th. Hopefully aside from that the month will be rather mundane and relaxing. Possibly some outdoor water fun? We'll see and share the photos with you.
We've updated the May pictures and will likely add more since the combination of several days and camera happy parents adds up to lots of Lucas photos. :) Hope you enjoy!
Not sure what all next month month will hold other than surgery on the 27th. Hopefully aside from that the month will be rather mundane and relaxing. Possibly some outdoor water fun? We'll see and share the photos with you.
We've updated the May pictures and will likely add more since the combination of several days and camera happy parents adds up to lots of Lucas photos. :) Hope you enjoy!
 |
| May 2008 |
Wednesday, May 14, 2008
Happy Birthday Lucas!
Lucas has been having a great day today! Esther said that he actually seemed to have fun at swim class, and he's been in a great mood for most of the day.
It's been amazing for Esther and I to look back over the pictures we've taken over the last year. Lucas has changed so much
May 14 2007
June 2007
July 2007
August 2007
September 2007
October 2007
November 2007
December 2007
January 2008
February 2008
March 2008
April 2008
May 14 2008
And here is the latest set of pictures:
It's been amazing for Esther and I to look back over the pictures we've taken over the last year. Lucas has changed so much
May 14 2007
June 2007
July 2007
August 2007
September 2007
October 2007
November 2007
December 2007
January 2008
February 2008
March 2008
April 2008
May 14 2008
And here is the latest set of pictures:
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| May 2008 |
Sunday, May 11, 2008
Happy Mother's Day!
Sorry it's been so long since the last post. Lucas has been a bit under the weather recently. He just had a bit of a stuffy nose, some sneezing and an occasional cough. No fever though. We think it might have been allergy related. Marc was having the same symptoms and his were because of allergies. Then it rained some more and whatever it was got washed away and they are now both fine. :)
Lucas also got his hair cut last week. He was awake and squirming and the overall look is not what I was planning, but it's not the worst and it will grow. It kind of looks like he got a hold of the scissors and then I tried to fix it. We'll get some pictures up next week and show off his new do. We should have lots to post because Wednesday is his birthday and that demands many many photos.
That's right, a year has already passed since we were first able to hold him in our arms. In so many ways it seems like it's been decades, not months, but in other ways it seems like he just took his first breath yesterday. The time has flown by, though we also have a difficult time remembering life without him. Not that we were incomplete without him and not that we would be overflowing when we have more kids, ,but we feel, pardon the hokey Jerry Maguire-ness, that he completes us in a sense. I'm sure there are those out there who understand what I mean. I imagine we'll experience it again with every child.
This week holds a lot of busyness as we prepare for Lucas' birthday party this coming weekend. Marc's family is flying in from NY and my dad is driving up from Mexico to join us locals in celebrating his life. There is much cleaning and planning and shopping that we will do this week in addition to therapy and swim class. (We have 3 more weeks to hopefully enjoy it. This past week, he slept for about 25 of the 30 minute class and the water was the coldest it's been. He's a pretty impressive kid!)
If I get a chance, I might put a few pics up before the party, just of our little intimate family celebration on his actual birthday. We'll see what we get to.
For now, I am off to bed and hope that all you mothers and fathers, sons and daughters (that should cover everyone) had a wonderful week and fabulous mother's day!
Lucas also got his hair cut last week. He was awake and squirming and the overall look is not what I was planning, but it's not the worst and it will grow. It kind of looks like he got a hold of the scissors and then I tried to fix it. We'll get some pictures up next week and show off his new do. We should have lots to post because Wednesday is his birthday and that demands many many photos.
That's right, a year has already passed since we were first able to hold him in our arms. In so many ways it seems like it's been decades, not months, but in other ways it seems like he just took his first breath yesterday. The time has flown by, though we also have a difficult time remembering life without him. Not that we were incomplete without him and not that we would be overflowing when we have more kids, ,but we feel, pardon the hokey Jerry Maguire-ness, that he completes us in a sense. I'm sure there are those out there who understand what I mean. I imagine we'll experience it again with every child.
This week holds a lot of busyness as we prepare for Lucas' birthday party this coming weekend. Marc's family is flying in from NY and my dad is driving up from Mexico to join us locals in celebrating his life. There is much cleaning and planning and shopping that we will do this week in addition to therapy and swim class. (We have 3 more weeks to hopefully enjoy it. This past week, he slept for about 25 of the 30 minute class and the water was the coldest it's been. He's a pretty impressive kid!)
If I get a chance, I might put a few pics up before the party, just of our little intimate family celebration on his actual birthday. We'll see what we get to.
For now, I am off to bed and hope that all you mothers and fathers, sons and daughters (that should cover everyone) had a wonderful week and fabulous mother's day!
Friday, May 2, 2008
Splish, Splash and Sleep
So, three weeks into our aquatics class and Lucas is still not happy about being there. Week one he cried through most all of it; week two he cried through about half and slept, yes fell asleep in the water, for the last few minutes; week three he fussed through about 3/4 of the time. The first two weeks he missed his morning nap. The third week, I think his teeth were bothering him and I hadn't given him any thing to soothe them. Next week, hopefully we'll get the nap and not have the teething issue. His gums are pretty swollen and look like there are at least 3, maybe 4 or 5 teeth thinking about popping up. I don't think I'd be very comfortable either.
Marc's cousin Alex is recovering well. He is having some pain and all of his symptoms such as blurred vision have yet to dissipate, but it has only been a week and that is to be expected.
Marc's place of employment is hosting the President of the US today. Yep, George W Bush is coming to St. Louis and Marc will be one of about 250 people to share the room with him. Marc was recruited to be a volunteer assisting with checking in the local press. Regardless of how one may feel personally about the presidency, I still think it's pretty cool, surreal and exciting.
I'm planning to cut Lucas' hair again. I've trimmed it up in the back before, but now it needs some trimming on top and on the sides as well.. We'll see how it goes and if anyone will notice in the pictures to come. :)
Blessings!
Marc's cousin Alex is recovering well. He is having some pain and all of his symptoms such as blurred vision have yet to dissipate, but it has only been a week and that is to be expected.
Marc's place of employment is hosting the President of the US today. Yep, George W Bush is coming to St. Louis and Marc will be one of about 250 people to share the room with him. Marc was recruited to be a volunteer assisting with checking in the local press. Regardless of how one may feel personally about the presidency, I still think it's pretty cool, surreal and exciting.
I'm planning to cut Lucas' hair again. I've trimmed it up in the back before, but now it needs some trimming on top and on the sides as well.. We'll see how it goes and if anyone will notice in the pictures to come. :)
Blessings!
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