I have a confession to make: Though my faith in God and His sovereignty over everything including Lucas and our family is unwavering and has not wavered from even before his life was confirmed, my emotions have suffered a few injuries from the blows we've been thrown. We have said many times that if we did not have absolute faith in God when we met with a genetic counselor and neonatologist at St. Mary's we not only would have been convinced that our sweet child's life was worthless, but our own lives as well and, were we running without Jesus, we might have gone out and hanged ourselves because it was such a dismal and discouraging appointment. (That appointment didn't send me to tears, but rather to my 80lb heavy bag to blow off some of my serious anger with the two women who were so disappointed that, though I defiantly declared that we have no intention of even considering killing our baby, it was "too late for that anyway" -though if late term abortions were legal then as it looks they soon will be, I am certain they would have been pleading with us to follow through.) Still, the barrage of difficult news stated in the clinical and not in faith that there is One who desires good for us and has a plan that we may not understand but He promises to be with us every step of the way has been exhausting to my emotions at times. I have generally taken a day (or two or five) to heal the emotions of disappointment or fear or general sadness with the reminders of the amazing joy that is embodied in our son and that it doesn't matter what some clinician says (I don't care how many degrees hang on their wall!), because they don't know the Truth.
This most recent diagnosis of Lennox-Gastaut Syndrome (LGS) was another such blow for me. When informed that "seizures typically progress and become more severe" and then reading about it and all the things said that seem so terrible to me, I was at an emotional loss for sure. The turning point actually came when I read one definition of LGS that included the word "devastating". That is the same word used by the above mentioned neonatologist. I was suddenly relieved by the gentle reminder that God is still God and all those "smarties" out there do not know Lucas. I resolved to ignore the diagnosis and continue to enjoy my son, still being up on all his medication and clinical stuff as needed, but not believing that a definition could ever define Lucas.
We saw Dr Burris yesterday and I felt it was a great appointment. We are going to continue increasing Lucas' Banzel (the brand-spanking-new drug) to reach the "target dose" We have not noticed much of a change thus far, but improvement is not necessarily expected before the target dose is achieved. (We won't get there for about another 3 weeks and then we are going to give it 3-4 months to make sure it's working.) We discussed Lucas' EEG and briefly LGS. Dr. Burris said that he will almost never use the words Lennox-Gastaut because all that stuff out there trying to define what is basically just a specific pattern on an EEG, onset of seizures before a certain age and various types of seizures is ridiculous. No one can say that those with this diagnosis will have all that stuff that all those "smart people" out there are saying. It gives a new direction for treatment, but it doesn't change who Lucas is and never will. Hearing him express that point of view made me again thank God that we have been blessed with some really great doctors. :)
We had a great start this morning. With Lucas between us, we had him "find" each of us in turn, and again and again when we said "Find Daddy", he went for Marc and when we said "Find Mommy", he went for me. This is a great encouragement, being assured that though his speech is behind (so much more so after the Canadian drug), he is still understanding and is acting on that understanding. I am certain it is just a matter of time before the talking and walking and feeding himself and so many other things become a part of normal every day life. :)
Blessings to you all! Thank you for your continued love and prayers and tolerance of my incessant writing! :)
Friday, February 27, 2009
Monday, February 16, 2009
What we know for now
Lucas, as always, was a super champ for the EEG last week. He, thankfully, fell asleep soon after the tech began placing the leads on his head (a process which he does not enjoy). We kept the activities pretty minimum, no real therapy stuff, due to having a "ponytail" of wires coming off of his head connecting to a receiver in a little "back pack" that wasn't long enough for him to stand without me picking it up. That was then connected to another wire that lead to the wall. We had one more wire that we had to keep close that was the button I had to push any time he had a seizure. It was easy to get tangled and complicated to move much, so we didn't. :)
Thankfully, they were able to gather a lot of information and we now have a new diagnosis (Dx): Lennox-Gastaut Syndrome. Basically, this has to do with his age and the type of seizures (sz) he has. They said that his sz are "tonic", meaning they involve an increase in the muscle tone. They said that though his sz look the same way suggesting (outwardly) the possibility that they are located in a single location in the brain, they are, in fact, diffuse, involving the entire brain. They said that there is actually always some level of sz-like activity in the brain, even between sz. (I did not get a lot of clarity on this, but hope to when we follow up with Dr. Burris next Thursday.)
Typically, I was told in the hospital, Lennox-Gastaut is treated with drugs that have more severe side effects, liver and bone marrow damaging side effects. Last month, however, a new drug hit the US market called Banzel. It has very mild (known) side effects including dizziness and fatigue, the same kind of side effects the other meds he's tried have. Being that this is a brand-spanking-new drug, it is not easy to get. We had to go to a special pharmacy about a half hour away to get it, but it finally came in today so we will start him on it tonight. They said that we should see results pretty quickly and we are hopeful that they will be excellent. :)
If you decided to read up on Lennox-Gsataut, then you may have read that it is uncommon for children to grow out of sz disorders all together, though they do "grow out of" Lennox-Gastaut. Typically, sz change and new Dx are made. This, of course, is not news that we prefer, but our faith remains in God Most High and we know that He has Lucas' best interest in mind, always. One tiny example is that if we had scheduled the EEG just 2-3 weeks earlier (as I was anxious to do and rather frustrated in waiting), we would have only had more harsh drugs as our options. As it worked out, though, we now have a much preferred option. A nice reminder of how God is always in control even when we try to take that control from Him. :)
We had the wonderful gift of watching Lucas begin his adventures in walking that raised our spirits immeasurably high. We hope that the video does the same for you. (I also apologize for the sometimes annoying pitch my voice takes as I squealed with excitement.) Her also are some pictures for your viewing pleasure.
Thanks for your love and prayers. We are certain they make things far better. :)
Thankfully, they were able to gather a lot of information and we now have a new diagnosis (Dx): Lennox-Gastaut Syndrome. Basically, this has to do with his age and the type of seizures (sz) he has. They said that his sz are "tonic", meaning they involve an increase in the muscle tone. They said that though his sz look the same way suggesting (outwardly) the possibility that they are located in a single location in the brain, they are, in fact, diffuse, involving the entire brain. They said that there is actually always some level of sz-like activity in the brain, even between sz. (I did not get a lot of clarity on this, but hope to when we follow up with Dr. Burris next Thursday.)
Typically, I was told in the hospital, Lennox-Gastaut is treated with drugs that have more severe side effects, liver and bone marrow damaging side effects. Last month, however, a new drug hit the US market called Banzel. It has very mild (known) side effects including dizziness and fatigue, the same kind of side effects the other meds he's tried have. Being that this is a brand-spanking-new drug, it is not easy to get. We had to go to a special pharmacy about a half hour away to get it, but it finally came in today so we will start him on it tonight. They said that we should see results pretty quickly and we are hopeful that they will be excellent. :)
If you decided to read up on Lennox-Gsataut, then you may have read that it is uncommon for children to grow out of sz disorders all together, though they do "grow out of" Lennox-Gastaut. Typically, sz change and new Dx are made. This, of course, is not news that we prefer, but our faith remains in God Most High and we know that He has Lucas' best interest in mind, always. One tiny example is that if we had scheduled the EEG just 2-3 weeks earlier (as I was anxious to do and rather frustrated in waiting), we would have only had more harsh drugs as our options. As it worked out, though, we now have a much preferred option. A nice reminder of how God is always in control even when we try to take that control from Him. :)
We had the wonderful gift of watching Lucas begin his adventures in walking that raised our spirits immeasurably high. We hope that the video does the same for you. (I also apologize for the sometimes annoying pitch my voice takes as I squealed with excitement.) Her also are some pictures for your viewing pleasure.
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| January/February 2009 |
Thanks for your love and prayers. We are certain they make things far better. :)
Walking through the kitchen
A few weeks ago, Lucas got a gait trainer - which is a walker with extra supports that will let Lucas learn how to walk. He hadn't really figured out how to move around in it yet, but on Friday Esther put him into the walker and he started scooting around right away! He wound up walking through the kitchen three times. Here's a video of the 2nd time around (which was also the quickest):
Tuesday, February 10, 2009
EEG Tomorrow
Tomorrow morning Lucas will go into Children's Hospital for 24hr EEG monitoring. The hope is that by watching Lucas' brain as he has seizures, the doctors can learn more about what's happening and be able to figure out the best way to treat them. Esther will be with him the whole time, and I will be there in the evening. There is no cell phone or laptop usage allowed in the monitoring room, so Esther is going to bring some DVDs and toys to try and keep them both occupied. She picked up the DVD for Disney's Robin Hood last week and is itching to watch it...
Friday, January 30, 2009
Sorry, Betty, Again
Today is the first time since we've returned from NY that I have spent any significant time on the computer. I know, I know. Adjusting to being back (which does not include even checking my e-mail), taking turns with varying degrees of illness, and then having some snow keeping Marc working from home a couple days combined with my typical internet avoidance resulted in the long absence. So without further a due, here's the news:
First off, we are all finally feeling better. Marc had a stomach thing followed by an upper respiratory infection (URI). Lucas also had a URI and it held on for almost 2 weeks. After they both were almost back to wholeness, I got sick.
Being that the surgery is still on hold (for both the eye and the boy parts), I felt the need to follow up with those doctors. We saw Dr Lueder, the ophthalmologist, first. He said that we should continue patching an hour a day. The surgery can wait. He said that there is no indication of any loss of vision, so that is good news. He also said that Lucas is a bit near sighted in one eye and far sighted in the other. The discrepancy isn't enough to require corrective lenses at this point, however. I feel like this might help to explain some of his apparent struggle to focus on anything unless it is within a certain proximity: falling, for one eye, close enough and for the other, far enough so that both eyes can be put to good use. :) Dr. Lueder said that we can schedule surgery at any time and come in for a pre-op appointment, but if it doesn't happen within 9-12 months, we should come in again just for a regular exam.
We saw Dr. Austin, the urologist, the following week. He also said that Lucas looks great and that we can schedule surgery any time within a year without need of another appointment. If more than a year passes before we are able to schedule the surgery, we should schedule a pre-op appointment first, but he's not at all concerned. He said he's fine with doing the surgery anytime, though he would prefer to do so before adolescence.
We, of course, are praying that we will be able to schedule to surgery much sooner than a year from now and certainly long before adolescence. We are waiting for the all clear form the neurologist, Dr. Burris. He wants Lucas to be free of seizures for at least 2 weeks before scheduling. Since removing the clobazam (the Canadian drug), we have seen, Praise the Good Lord, a decrease in seizures! He is still having a slew, but probably 20-30 less per day at least. We also have hopes that his talking will again begin to progress.
We have scheduled the 23 hour videoed EEG at Children's hospital for the 11th of February. We will arrive at the hospital around 0830 and get registered and get Lucas wired. He will have a little back pack holding the monitor. We will keep our typical routine as best we can and stay over night. (Marc will likely be at work all day, but will come after. He will go home to sleep, but I will stay at the hospital with Lucas.) We will then be able to leave "sometime" the next day. We will have a follow up appointment with Dr. Burris 2 weeks later. We don't know where he might go from here, but we'll let you know.
Also, there is a Doctor Marc read of who does research out of Chicago on one of the apsects seen in Lucas' brain, polymicrogyria. This is the likely culprit causing the seizures. He will look at MRIs sent to him and give an analysis. If he thinks Lucas would be a good candidate for his research, there might be some testing and I don't know what all exactly, but it is something we are looking at doing.
Lucas also got his new Pacer gait trainer. (It is a fancy-little-kids-teach-you-to-walk-walker- thing. ) He only got it last Thursday, but is already doing really well. He doesn't seem to mind being in it and is able to scoot himself a bit, backwards of course without help, but if we prevent him from going back, he will go forward. It will be a process, as everything, but it is a very exciting beginning.
That is about all for now. We'll get some pictures up soon so you can see Lucas in his new bow flex, as my mom likes to say. :)
Blessings and love and thanks for standing with us, with our amazing little boy. :)
First off, we are all finally feeling better. Marc had a stomach thing followed by an upper respiratory infection (URI). Lucas also had a URI and it held on for almost 2 weeks. After they both were almost back to wholeness, I got sick.
Being that the surgery is still on hold (for both the eye and the boy parts), I felt the need to follow up with those doctors. We saw Dr Lueder, the ophthalmologist, first. He said that we should continue patching an hour a day. The surgery can wait. He said that there is no indication of any loss of vision, so that is good news. He also said that Lucas is a bit near sighted in one eye and far sighted in the other. The discrepancy isn't enough to require corrective lenses at this point, however. I feel like this might help to explain some of his apparent struggle to focus on anything unless it is within a certain proximity: falling, for one eye, close enough and for the other, far enough so that both eyes can be put to good use. :) Dr. Lueder said that we can schedule surgery at any time and come in for a pre-op appointment, but if it doesn't happen within 9-12 months, we should come in again just for a regular exam.
We saw Dr. Austin, the urologist, the following week. He also said that Lucas looks great and that we can schedule surgery any time within a year without need of another appointment. If more than a year passes before we are able to schedule the surgery, we should schedule a pre-op appointment first, but he's not at all concerned. He said he's fine with doing the surgery anytime, though he would prefer to do so before adolescence.
We, of course, are praying that we will be able to schedule to surgery much sooner than a year from now and certainly long before adolescence. We are waiting for the all clear form the neurologist, Dr. Burris. He wants Lucas to be free of seizures for at least 2 weeks before scheduling. Since removing the clobazam (the Canadian drug), we have seen, Praise the Good Lord, a decrease in seizures! He is still having a slew, but probably 20-30 less per day at least. We also have hopes that his talking will again begin to progress.
We have scheduled the 23 hour videoed EEG at Children's hospital for the 11th of February. We will arrive at the hospital around 0830 and get registered and get Lucas wired. He will have a little back pack holding the monitor. We will keep our typical routine as best we can and stay over night. (Marc will likely be at work all day, but will come after. He will go home to sleep, but I will stay at the hospital with Lucas.) We will then be able to leave "sometime" the next day. We will have a follow up appointment with Dr. Burris 2 weeks later. We don't know where he might go from here, but we'll let you know.
Also, there is a Doctor Marc read of who does research out of Chicago on one of the apsects seen in Lucas' brain, polymicrogyria. This is the likely culprit causing the seizures. He will look at MRIs sent to him and give an analysis. If he thinks Lucas would be a good candidate for his research, there might be some testing and I don't know what all exactly, but it is something we are looking at doing.
Lucas also got his new Pacer gait trainer. (It is a fancy-little-kids-teach-you-to-walk-walker- thing. ) He only got it last Thursday, but is already doing really well. He doesn't seem to mind being in it and is able to scoot himself a bit, backwards of course without help, but if we prevent him from going back, he will go forward. It will be a process, as everything, but it is a very exciting beginning.
That is about all for now. We'll get some pictures up soon so you can see Lucas in his new bow flex, as my mom likes to say. :)
Blessings and love and thanks for standing with us, with our amazing little boy. :)
Monday, January 12, 2009
Buy american
After trying the Canadian seizure meds for a few months, we've noticed that not only does Lucas seem to be having MORE seizures than before - but he also hasn't been saying words (Da Da, Ma Ma) like he was before. So Esther called the neurologist today and he agreed to take him off of the medication. Like all seizure meds, we need to ease him off of it. So it will be about a week before he's completely off of the Canadian drugs.
The doctors still seem confused about how to best handle Lucas' seizures. He is still taking Keppra - which is the medicine that kept him seizure free for the first few months he was on it. So we are planning on bringing Lucas in for a 24 hour evaulation at STL Children's Hospital where he will be hooked up to an EEG so that they will be able to monitor his brain while it is seizing (and hopefully will learn how to stop it from happening). We haven't heard back about when this will happen, but it should be within the next few weeks.
The doctors still seem confused about how to best handle Lucas' seizures. He is still taking Keppra - which is the medicine that kept him seizure free for the first few months he was on it. So we are planning on bringing Lucas in for a 24 hour evaulation at STL Children's Hospital where he will be hooked up to an EEG so that they will be able to monitor his brain while it is seizing (and hopefully will learn how to stop it from happening). We haven't heard back about when this will happen, but it should be within the next few weeks.
Sunday, January 11, 2009
Christmas Celebration
We had a great time spending the holidays in NYC with family and friends. I posted a bunch of pictures from the trip
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| Christmas 2008 |
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