I watched an episode of Law & Order last night with a couple who had aborted their child after receiving a diagnosis of Down syndrome - only to find out that the baby was perfectly healthy after the fact. This got me wondering about how many people actually abort their children when given diagnoses like this. Being that we knew about Lucas' brain malformations midway through the pregnancy, we were made aware of our termination opportunity by two doctors that we met with. And if the midwest is the moral compass of the US like some people say, then I guess I shouldn't be surprised to know how rampant this behavior is in the rest of the country.
I found a very interesting article in the Washington Post that goes into detail about the reality of raising a child with a disability in California. The author, whose daughter has Down syndrome, describes an encounter with the director of an Ivy League ethics program who "believes that prospective parents have a moral obligation to undergo prenatal testing and to terminate their pregnancy to avoid bringing forth a child with a disability, because it was immoral to subject a child to the kind of suffering he or she would have to endure." According to the article, studies estimate that 80-90% of pregnancies with prenatal diagnoses of Down syndrome are aborted.
Reading this horrifies me, but I also find myself strangely comforted. Because if turning to abortion is becoming the new standard in keeping a perfect family, then I'm glad that God gave Lucas to us - and that we understand that God has a great purpose for his life.
Monday, March 24, 2008
Saturday, March 22, 2008
Can you hear me now?
Lucas has excellent hearing and has from the womb. He used to find Marc's voice when Marc would read to him, pray for him and talk to him. Lucas would respond by pushing against me directly on the other side of his daddy's face. It was so sweet, truly cherished moments. We would look forward to our bedtime routine which included these meetings of Father and Son. Lucas always had spot on accuracy though it sometimes took a few minutes to find his daddy.
The same is still true today. He knows Marc's voice and loves to hear him reading, praying, talking, singing, being goofy; he knows my voice too. Even now, with an ear infection, that's right, an ear infection, his hearing is impeccable.
I took Lucas in to the pediatrician's office yesterday afternoon and that was what we were told. He began his first of five days on antibiotics yesterday as well. I have still been sucking some rather unsavory shades of greenish-yellow from his cute little nose with nostrils reddened from all the attention. He slept fairly well last night in spite of the persistence of snot. He only woke twice, had some major saline and sucking times, nursed, and went back to sleep pretty well. I am also smothering myself in vapo so that he can get some good whiffs without having the tingles of it on his skin.
He ended up only having 2 sz yesterday and, so far, one today. I"m confident we will get back to fully resting and having No More Seizures!
Hope you all have a wonderful Easter!
The same is still true today. He knows Marc's voice and loves to hear him reading, praying, talking, singing, being goofy; he knows my voice too. Even now, with an ear infection, that's right, an ear infection, his hearing is impeccable.
I took Lucas in to the pediatrician's office yesterday afternoon and that was what we were told. He began his first of five days on antibiotics yesterday as well. I have still been sucking some rather unsavory shades of greenish-yellow from his cute little nose with nostrils reddened from all the attention. He slept fairly well last night in spite of the persistence of snot. He only woke twice, had some major saline and sucking times, nursed, and went back to sleep pretty well. I am also smothering myself in vapo so that he can get some good whiffs without having the tingles of it on his skin.
He ended up only having 2 sz yesterday and, so far, one today. I"m confident we will get back to fully resting and having No More Seizures!
Hope you all have a wonderful Easter!
Friday, March 21, 2008
Snot Sucker
It's about midnight and Lucas is trying to get back to sleep. He woke about 20 minutes ago and had a seizure. That makes 4 for the day, the most in four days. He then began snorting due to a stuffy nose. I sucked some snot out of his head, but he is still not breathing normally. I am frustrated. To suck more snot will help him breathe which will allow him to sleep, but also keeps him from sleeping while doing it. To not suck snot keeps him from breathing normally which also keeps him from sleeping normally. I can hear his stuffy breathing from here, across the hall.
We were just getting close to back on track; to start all over...
Thanks for your prayers. Please keep them up that Lucas' stuffiness would go away and stay away.
Back to bed now. I'll keep you posted.
We were just getting close to back on track; to start all over...
Thanks for your prayers. Please keep them up that Lucas' stuffiness would go away and stay away.
Back to bed now. I'll keep you posted.
Thursday, March 20, 2008
Seizure Etiology
Lucas has continued to have seizures (sz) every day. He was having at least 4 a day. It then was up to every time he woke, up to 8 in a day. Marc found a website (epilepsy.com) that offered some helpful information about sz related to sleep. There is one article that states that sleep deprivation can be a major factor in recurrent sz. What it describes is what we have been seeing in Lucas.
I am pretty sure it began with a stuffy nose that was pretty fierce and persistent. It lasted about 3 weeks. He would be awakened by a need to breathe. This greatly disrupted his sleep cycle and, I believe, was the beginning of the vicious cycle of sleep disturbances and seizures. Basically, when the circadian rhythm is thrown off, the atmosphere is ripe for seizure development; the more seizures one has, the more it throws the rhythm.
We invite you to check the website for yourselves if you are interested. The articles are well written, informative and easily comprehensible. There are a few videos that are good for us visual learners too.
The treatment for this is simply to try to get back into the sleep schedule that existed before the stuffy nose began. This translates into me sitting very still while holding Lucas and soothing him back into sleep when he begins to stir. So far, we have seen vast improvements. Now, typically, he is having 2 sz a day compared to 6-8 a week ago. The neurologist's office recommends to keep up what we have been doing and hopefully within another 2 weeks, we will be back to normal.
Thank you all for your prayers. God is good and takes good care of us and we are thankful.
Lucas is calling me now. I hope this information helps those of you curious about what exactly happens when Lucas has a sz.
Blessings!
I am pretty sure it began with a stuffy nose that was pretty fierce and persistent. It lasted about 3 weeks. He would be awakened by a need to breathe. This greatly disrupted his sleep cycle and, I believe, was the beginning of the vicious cycle of sleep disturbances and seizures. Basically, when the circadian rhythm is thrown off, the atmosphere is ripe for seizure development; the more seizures one has, the more it throws the rhythm.
We invite you to check the website for yourselves if you are interested. The articles are well written, informative and easily comprehensible. There are a few videos that are good for us visual learners too.
The treatment for this is simply to try to get back into the sleep schedule that existed before the stuffy nose began. This translates into me sitting very still while holding Lucas and soothing him back into sleep when he begins to stir. So far, we have seen vast improvements. Now, typically, he is having 2 sz a day compared to 6-8 a week ago. The neurologist's office recommends to keep up what we have been doing and hopefully within another 2 weeks, we will be back to normal.
Thank you all for your prayers. God is good and takes good care of us and we are thankful.
Lucas is calling me now. I hope this information helps those of you curious about what exactly happens when Lucas has a sz.
Blessings!
Saturday, March 15, 2008
Tuesday, March 11, 2008
Within Normal Limits
When Lucas was born, his head was pretty ginormous. Even after about 2 1/2 inches were taken off when Dr. Leonard placed his shunt and allowed large amounts of excess fluid to drain, he was still "off the chart" as far as "normal" head circumference is considered. That all has changed though.
Today he had his 9 month check up (though he'll be 10 months on Friday), and his head circumference is now considered to be in the 90-100th percentile. Still very large, but on the chart. That doesn't really mean anything medically, but I think it's exciting just the same. :)
In other news, I heard back from the neurologist's office yesterday and they said to go ahead and increase his 3rd dose of Tegretol as well, so now all three of his daily doses are up by 1/2mL. We are supposed to follow up with them in 2 weeks (or call earlier if we have any concerns). We are to continue using the Klonopin as needed (if he has a seizure lasting longer than 5 minutes or more than one in a day). We are back on the Klonopin now and will be through tomorrow afternoon. He has had 4 seizures today, 2 yesterday, 4 the day before that. Hopefully, his body will adjust to the new dosing and the seizures will stop. They only happen when he wakes up, not every time he wakes, but something about waking allows them to happen. I still haven't gotten back to the elliptical in the basement because I don't want to leave him, but I can get in some stretching and ab work in the living room so I don't feel like a total physical wastoid. :)
Now, he is sleepy and hungry and that means I'm on full duty. His Grandpa Mike arrives from Mexico tomorrow for a couple weeks, so we are looking forward to that. We'll try to get some more pictures up soon, maybe some video too, because he is the cutest boy in the world and everyone needs to keep up with his ravishing good looks.
Blessings and love to you all. Thanks for your prayers; please keep them up. God tells us to ask.
Esther (for Marc and Lucas)
Today he had his 9 month check up (though he'll be 10 months on Friday), and his head circumference is now considered to be in the 90-100th percentile. Still very large, but on the chart. That doesn't really mean anything medically, but I think it's exciting just the same. :)
In other news, I heard back from the neurologist's office yesterday and they said to go ahead and increase his 3rd dose of Tegretol as well, so now all three of his daily doses are up by 1/2mL. We are supposed to follow up with them in 2 weeks (or call earlier if we have any concerns). We are to continue using the Klonopin as needed (if he has a seizure lasting longer than 5 minutes or more than one in a day). We are back on the Klonopin now and will be through tomorrow afternoon. He has had 4 seizures today, 2 yesterday, 4 the day before that. Hopefully, his body will adjust to the new dosing and the seizures will stop. They only happen when he wakes up, not every time he wakes, but something about waking allows them to happen. I still haven't gotten back to the elliptical in the basement because I don't want to leave him, but I can get in some stretching and ab work in the living room so I don't feel like a total physical wastoid. :)
Now, he is sleepy and hungry and that means I'm on full duty. His Grandpa Mike arrives from Mexico tomorrow for a couple weeks, so we are looking forward to that. We'll try to get some more pictures up soon, maybe some video too, because he is the cutest boy in the world and everyone needs to keep up with his ravishing good looks.
Blessings and love to you all. Thanks for your prayers; please keep them up. God tells us to ask.
Esther (for Marc and Lucas)
Friday, March 7, 2008
S'more
I took Lucas in to a lab yesterday to get his blood drawn to check his Tegretol level so that the neurologist can know how to adjust his meds. He was so brave, as always. He was asleep and awoke to feel the tourniquet tightening around his little arm. I think he hates that and the being held still more than the actual stick. He really hates being held still.
He had two more seizures yesterday morning so we started the Klonopin again. He had another seizure this morning too. I'll be calling the neurologist later today to see if they got the results of the blood work and to talk to them about any changes they may want us to make since he is still having so many seizures.
He is such a sweet little love. When he is having a seizure, he will often make sad whining sounds as though to say, "Please make this stop." As soon as it is over, he is a squealing joyful boy again and typically a hungry one at that. :P It is difficult enough to see him having these uncontrolled events, but to think that he is suffering at all in the process is heart wrenching, though I think it is more out of frustration that he is kept from doing what he wants to do.
He was chewing on fingers this morning and gagged himself bad enough to puke a little (which one might think he'd stop doing after he's done it a few times; the fingers can only go back so far! :P) and so now I'm off to bathe him.
Please, keep praying, for wisdom for the doctor about medication changes and especially, for Lucas to be healed.
Thanks for your love.
He had two more seizures yesterday morning so we started the Klonopin again. He had another seizure this morning too. I'll be calling the neurologist later today to see if they got the results of the blood work and to talk to them about any changes they may want us to make since he is still having so many seizures.
He is such a sweet little love. When he is having a seizure, he will often make sad whining sounds as though to say, "Please make this stop." As soon as it is over, he is a squealing joyful boy again and typically a hungry one at that. :P It is difficult enough to see him having these uncontrolled events, but to think that he is suffering at all in the process is heart wrenching, though I think it is more out of frustration that he is kept from doing what he wants to do.
He was chewing on fingers this morning and gagged himself bad enough to puke a little (which one might think he'd stop doing after he's done it a few times; the fingers can only go back so far! :P) and so now I'm off to bathe him.
Please, keep praying, for wisdom for the doctor about medication changes and especially, for Lucas to be healed.
Thanks for your love.
Wednesday, March 5, 2008
A little here, a little there, but none right now
So, since last I wrote there have been some new "developments". Here's an attempted informative update:
We ended up giving Lucas 4 doses over 2 days of a drug called Klonopin for his last round of sz (seizure) and adjusted his daily medication, Tegretol, by increasing one of his three daily doses. Everything was fine and fabulous. He had one last sz lasting about 1 minute early Friday morning, but was great all through the weekend. Then, Monday morning, around 1am, he had another sz. It was about 4-5 minutes and was much more subtle than the last sz, but a sz it was. He was fine all day Monday, but then Tuesday, he had another sz, again around 1am and again subtle. (I'm talking I had to look really hard to be sure that he was actually having these sz.) After that sz Tuesday morning, I gave a Klonopin tablet. (It dissolves in his mouth.) It was technically about 24 hours and we were instructed to give it only if the sz lasted longer than 5 minutes or if there was more than one within 24 hours, but I thought, being right on the border of a day, I'd go ahead with it. This means that I must then follow through with three other doses spaced every 12 hours. We also increased a second of his three daily doses of the Tegretol.
-Are you all able to follow me when I write about this stuff? I hope so. I always make Marc read what I write to get a layman's perspective. Irregardless... (yes, I know that is not a real word.)
Today, I got a call from the same day Sx (surgery) nurse to get some brief physical info about Lucas for his upcoming Sx. This information includes what medications he is currently taking and therefore an explanation of the recent sz and medication adjustments. He is also taking an antibiotic to rid him of a stuffy nose he's had for about 2 weeks. (Interestingly, the pediatrician and the Neuro nurse both said that this could be a sinus infection and the source of the recent sz activity.) The nurse called me back to clarify his sz status a few minutes later and to get the name and number of his neurologist. She then called back again to tell me that his Sx has been canceled due to the anesthesiologist's discomfort with sedating him without his sz status being under control even though his neurologist gave the all clear.
There are no dates available for rescheduling the Sx that would allow enough recovery time for his eyes before Lucas' hypospadias follow-up Sx to determine if he needs a second eye Sx which would be performed while he is in for the hypospadias Sx. So, now we are planning to have his eye Sx at the same time as the hypospadias follow-up Sx and if he needs any additional eye Sx, it will have to be after that.
I have to admit that I was quite thrown and a bit upset when I received this information. We wanted to go for an earlier Sx for the statistical increase in function and recovery. I had it in my mind that this was going to happen, had processed all rational and irrational fears and hesitations and was settled. Then the dust was kicked in my face because of some person who won't even talk to me or Lucas' neurologist.
After talking to Marc and to God for a while, I am much more calm now. We have been praying for months about this Sx and whether or not we should do it and if it should be done at this time. We have been praying that if we are not to put Lucas on the operating table this Friday that we would be clearly shown that so that we can cancel. Apparently, we are not supposed to follow through and instead of struggling to know if we are hearing God clearly, God shut the door for us so we don't have an opportunity to hear or act wrong. For this, we are eternally thankful. God only knows why this is not the time, but we trust His decisions. Perhaps something would go wrong or perhaps Lucas will only need one operation on his eyes and he has been saved from having to go through the whole Sx thing more than necessary. Perhaps, God will heal him completely on His own, without the help of surgeons.
Whatever the "perhaps", the Sx is off. We will continue patching his right eye for an hour daily to strengthen the brain's response to the left eye's input. We still have to get Lucas' blood drawn for his Tegretol level so that the neurologist will know how, more exactly, to adjust his daily medication.
That's the latest. Thanks for tolerating my garble. I assure you it's a lot more difficult to decipher the way I say/write it in my head. Anything you don't understand, you can ask, or in this day and age, Google. :) Thanks, more than anything, for your prayers. God is good and faithful and watching out for us, for you too. :)
Blessings and love and squeals of joy (that's from Lucas),
Esther and Marc
We ended up giving Lucas 4 doses over 2 days of a drug called Klonopin for his last round of sz (seizure) and adjusted his daily medication, Tegretol, by increasing one of his three daily doses. Everything was fine and fabulous. He had one last sz lasting about 1 minute early Friday morning, but was great all through the weekend. Then, Monday morning, around 1am, he had another sz. It was about 4-5 minutes and was much more subtle than the last sz, but a sz it was. He was fine all day Monday, but then Tuesday, he had another sz, again around 1am and again subtle. (I'm talking I had to look really hard to be sure that he was actually having these sz.) After that sz Tuesday morning, I gave a Klonopin tablet. (It dissolves in his mouth.) It was technically about 24 hours and we were instructed to give it only if the sz lasted longer than 5 minutes or if there was more than one within 24 hours, but I thought, being right on the border of a day, I'd go ahead with it. This means that I must then follow through with three other doses spaced every 12 hours. We also increased a second of his three daily doses of the Tegretol.
-Are you all able to follow me when I write about this stuff? I hope so. I always make Marc read what I write to get a layman's perspective. Irregardless... (yes, I know that is not a real word.)
Today, I got a call from the same day Sx (surgery) nurse to get some brief physical info about Lucas for his upcoming Sx. This information includes what medications he is currently taking and therefore an explanation of the recent sz and medication adjustments. He is also taking an antibiotic to rid him of a stuffy nose he's had for about 2 weeks. (Interestingly, the pediatrician and the Neuro nurse both said that this could be a sinus infection and the source of the recent sz activity.) The nurse called me back to clarify his sz status a few minutes later and to get the name and number of his neurologist. She then called back again to tell me that his Sx has been canceled due to the anesthesiologist's discomfort with sedating him without his sz status being under control even though his neurologist gave the all clear.
There are no dates available for rescheduling the Sx that would allow enough recovery time for his eyes before Lucas' hypospadias follow-up Sx to determine if he needs a second eye Sx which would be performed while he is in for the hypospadias Sx. So, now we are planning to have his eye Sx at the same time as the hypospadias follow-up Sx and if he needs any additional eye Sx, it will have to be after that.
I have to admit that I was quite thrown and a bit upset when I received this information. We wanted to go for an earlier Sx for the statistical increase in function and recovery. I had it in my mind that this was going to happen, had processed all rational and irrational fears and hesitations and was settled. Then the dust was kicked in my face because of some person who won't even talk to me or Lucas' neurologist.
After talking to Marc and to God for a while, I am much more calm now. We have been praying for months about this Sx and whether or not we should do it and if it should be done at this time. We have been praying that if we are not to put Lucas on the operating table this Friday that we would be clearly shown that so that we can cancel. Apparently, we are not supposed to follow through and instead of struggling to know if we are hearing God clearly, God shut the door for us so we don't have an opportunity to hear or act wrong. For this, we are eternally thankful. God only knows why this is not the time, but we trust His decisions. Perhaps something would go wrong or perhaps Lucas will only need one operation on his eyes and he has been saved from having to go through the whole Sx thing more than necessary. Perhaps, God will heal him completely on His own, without the help of surgeons.
Whatever the "perhaps", the Sx is off. We will continue patching his right eye for an hour daily to strengthen the brain's response to the left eye's input. We still have to get Lucas' blood drawn for his Tegretol level so that the neurologist will know how, more exactly, to adjust his daily medication.
That's the latest. Thanks for tolerating my garble. I assure you it's a lot more difficult to decipher the way I say/write it in my head. Anything you don't understand, you can ask, or in this day and age, Google. :) Thanks, more than anything, for your prayers. God is good and faithful and watching out for us, for you too. :)
Blessings and love and squeals of joy (that's from Lucas),
Esther and Marc
Subscribe to:
Posts (Atom)