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. :)
Friday, January 30, 2009
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 |
Monday, January 5, 2009
Update on Abby
Hey there all!
We pray you are remembering to thank God for the gift of beginning a new year. We pray that this year for you and for us is a year of miracles, that we would all have eyes to see them all around us, every day.
Returning from NYC from a 15 day holiday relishing in the reunion of family and friends, I am near overcome with a spirit of gratefulness. Staying in the basement at Marc's parents' house is really not so bad at all. We have plenty of space for us three and our own 3/4 bath. Having all the extra loving hands and eyes around was wonderful too. (I still keep thinking I need to watch out for Lucas losing a sock to Lacy, the adorable little princess of the Brooklyn family.) Coming home, however, I have been amazed at how much space we have, how much stuff, nice stuff too. I walked all around our house when we got in late Friday night and kept exclaiming, "Thank You, God!" for our house, our furniture, our yard and gardens (which are hibernating for the season), our bills getting paid, improvements we've been able to make, our plans for future improvements, etcetera, etcetera. All this is an immeasurable abundance on top of the infinitely more immeasurable abundance of love we share. God is so good. I pray you realize this. There can always be found things about which we can complain, but eternally more, there are things all around us for which we can thank God, simply the dynamics of the placement of the planet exactly as it is allowing us to have sustainable life is a wonder scientists are still attempting to fathom.
Ramble. Ramble.
I want to write today to ask you to join us in our continued prayers for little Abby, Abigail Grace Steer, the little girl down the hall from Lucas in the NICU who was born with a massive and aggressive brain tumor and was sent home to die. After drastic surgery and chemo, she has been making miraculous progress and has been cancer free for 9 months now. Recently, however, they have again come upon choppy waters, waters that seem relentless and demanding that all hope be abandoned. They are not surrendering to such an attack, but are pressing on. Please join them in their faith and support them in their struggle. You can read the info for yourself on their website.
We took hundreds of pictures and will go through them and put a bunch up for your viewing pleasure in the next few days. For now, Blessings and thanks for you r faithfulness and love for our family. We are more blessed than eternity has time to hear our thanks!
We pray you are remembering to thank God for the gift of beginning a new year. We pray that this year for you and for us is a year of miracles, that we would all have eyes to see them all around us, every day.
Returning from NYC from a 15 day holiday relishing in the reunion of family and friends, I am near overcome with a spirit of gratefulness. Staying in the basement at Marc's parents' house is really not so bad at all. We have plenty of space for us three and our own 3/4 bath. Having all the extra loving hands and eyes around was wonderful too. (I still keep thinking I need to watch out for Lucas losing a sock to Lacy, the adorable little princess of the Brooklyn family.) Coming home, however, I have been amazed at how much space we have, how much stuff, nice stuff too. I walked all around our house when we got in late Friday night and kept exclaiming, "Thank You, God!" for our house, our furniture, our yard and gardens (which are hibernating for the season), our bills getting paid, improvements we've been able to make, our plans for future improvements, etcetera, etcetera. All this is an immeasurable abundance on top of the infinitely more immeasurable abundance of love we share. God is so good. I pray you realize this. There can always be found things about which we can complain, but eternally more, there are things all around us for which we can thank God, simply the dynamics of the placement of the planet exactly as it is allowing us to have sustainable life is a wonder scientists are still attempting to fathom.
Ramble. Ramble.
I want to write today to ask you to join us in our continued prayers for little Abby, Abigail Grace Steer, the little girl down the hall from Lucas in the NICU who was born with a massive and aggressive brain tumor and was sent home to die. After drastic surgery and chemo, she has been making miraculous progress and has been cancer free for 9 months now. Recently, however, they have again come upon choppy waters, waters that seem relentless and demanding that all hope be abandoned. They are not surrendering to such an attack, but are pressing on. Please join them in their faith and support them in their struggle. You can read the info for yourself on their website.
We took hundreds of pictures and will go through them and put a bunch up for your viewing pleasure in the next few days. For now, Blessings and thanks for you r faithfulness and love for our family. We are more blessed than eternity has time to hear our thanks!
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