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.
Monday, January 12, 2009
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!
Wednesday, December 24, 2008
A little for now
We were recently reprimanded for not posting more frequently. I would like to apologize to Betty and to all of you who agree with her. :)
We have increased Lucas' Canadian meds again, but have yet to see any dramatic improvement. We will meet with Dr. Burris again in January and see where we'll go next. It is possible that even before our late January meeting that we will be at Children's Hospital for the 23 hour EEG. (Lucas will have leads on his head for an entire 23 hour period and there will be a video camera in the ceiling of the room to catch the visual corresponding with the brain waves.) I don't imagine that knowing where in the brain the seizures are occurring would affect medications since there is no way to target only one part of the brain, but perhaps it will help to give us some direction. I don't know. That is a question on the list for our next appointment.
We will have a load of pics up after the holidays, but there are a few up already if you want to have a peek at our handsome little guy and our good friends Katie and Carlie Fischer. :)
We have increased Lucas' Canadian meds again, but have yet to see any dramatic improvement. We will meet with Dr. Burris again in January and see where we'll go next. It is possible that even before our late January meeting that we will be at Children's Hospital for the 23 hour EEG. (Lucas will have leads on his head for an entire 23 hour period and there will be a video camera in the ceiling of the room to catch the visual corresponding with the brain waves.) I don't imagine that knowing where in the brain the seizures are occurring would affect medications since there is no way to target only one part of the brain, but perhaps it will help to give us some direction. I don't know. That is a question on the list for our next appointment.
We will have a load of pics up after the holidays, but there are a few up already if you want to have a peek at our handsome little guy and our good friends Katie and Carlie Fischer. :)
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| December 2008 |
Friday, December 5, 2008
November Pictures
Hey there All.
Hope you had a wonderful holiday and expressed your thankfulness for all the wonderful blessings you have in your life. Hopefully, you will remember to do so every day of the year, not just on a national holiday filled with gluttony. :)
Here are some pictures from the month of November of our little love for whom we thank God daily (and all throughout the day too!). We are also thankful for all of you and your love and prayers for Lucas and his mommy and daddy too. :)
Blessings to you all!
Hope you had a wonderful holiday and expressed your thankfulness for all the wonderful blessings you have in your life. Hopefully, you will remember to do so every day of the year, not just on a national holiday filled with gluttony. :)
Here are some pictures from the month of November of our little love for whom we thank God daily (and all throughout the day too!). We are also thankful for all of you and your love and prayers for Lucas and his mommy and daddy too. :)
Blessings to you all!
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| November 2008 |
Thursday, November 20, 2008
Noah Vanderhoff presents...
A few weeks ago Esther and Lucas filmed an interview with a local cable access program on Florissant City television called "News You Can Use". The episode focused on the First Steps program, which is the early intervention program through which Lucas receives all of his therapy . It's isn't quite as cool as Wayne's World, but Lucas did look pretty cool in his Spider Man slippers and "Dude, your girlfriend keeps checking me out" t-shirt.
Most of the episode is an interview with the St Louis director of the program. Esther and Lucas' segment starts at around the 22nd minute. You can watch the video online.
Most of the episode is an interview with the St Louis director of the program. Esther and Lucas' segment starts at around the 22nd minute. You can watch the video online.
Tuesday, November 4, 2008
Oh, Canada!
SO the seizures have not only not stopped, but they seem to be almost totally uncontrolled. We are not sure what happened, why this has become our situation, but it is, nonetheless. We saw Dr. Burris, the neurologist, last week. He thinks that the Keppra may not be working because it just isn't lasting long enough, but he doesn't want to increase the dose any further because Lucas is still so little. (Well, he is almost as tall as my legs, but weighs only 22.6 lbs.) In light of this, he has decided to try a new medication, again. This one is called Clobazam. It is a cousin of the clonazepam (Klonopin) that Lucas had been taking when he was having too many seizures a day and ended up taking daily for 4 1/2 months. He said that he has several patients taking this med and that he has seen some really great results.
Clobazam is not yet available in the US. It has been around a long time and has been used in several other countries successfully and without incident. There is a company who is in process to make it here in the States, but it is a long process and still has a good couple years before that happens. For now, we ship it in from Canada. It isn't too expensive, about $100 to get started and then about $35 every three months after that. We will see Dr. Burris again in about three months and discuss how things are going. We will, of course, be in touch regularly before and up to then as well as we introduce this new medication. He said that we should begin to see results within the first 2-3 weeks. If this is the case, he wants to immediately begin decreasing the Keppra, as it will be obvious that the new drug is doing the job and the Keppra will be unnecessary.
If, for whatever reason, the clobazam does not work, in three months Dr. Burris wants Lucas to have a 23 hour EEG at St. Louis Children's Hospital. We would go and stay in a small room and bring his meals and toys and Bumbo (his little blue chair). There would be a crib and, hopefully, a place for Marc and I to sit/sleep as well. Lucas would have the EEG wires attached to his head the entire time and there would be a video camera in the ceiling monitoring his activity and sleep as well. Dr. Burris is intrigued that Lucas' seizures involve a turn of the head to the Left while moving the right leg/arm. This suggests involvement of both hemispheres of the brain. Lucas' brain, however, is unlike any other and I wonder if the seizures are originating in the brain matter that runs up through the middle of this head like a peninsula. He had no seizures during either of the EEGs he had in the past, so it remains unclear where in the brain they originate.
We are hopeful. Lucas is still doing so wonderfully in spite of the increase in seizures and we rejoice in that. He is still working hard at standing and sitting and is doing better with his looking at us and other things. He is also chattering up a bunch, Ds, Bs, Ns, Ms, Rs and some Ls too are coloring his speech. Last week, it began to seem that he is connecting the fact that "Dada" is Marc. Very exciting! He also, just this morning, finally, cut through his top right gum line with his first molar. His gums have been swollen for months, all four, but finally we got one through!
That's about it for Lucas for now, but I wanted to invite you all to rejoice with us also that my cousin's son Cooper has come home! He is doing really well and his family is glad to finally have him where they have wanted him for so long. THank you, thank you, thank you for all your prayers for them. I know they appreciate it and believe they make a difference.
I added a few more pics to close out September/October if you want to take a look. I pray you are all well and every day recognize the blessings that surround you, that you enjoy!
Clobazam is not yet available in the US. It has been around a long time and has been used in several other countries successfully and without incident. There is a company who is in process to make it here in the States, but it is a long process and still has a good couple years before that happens. For now, we ship it in from Canada. It isn't too expensive, about $100 to get started and then about $35 every three months after that. We will see Dr. Burris again in about three months and discuss how things are going. We will, of course, be in touch regularly before and up to then as well as we introduce this new medication. He said that we should begin to see results within the first 2-3 weeks. If this is the case, he wants to immediately begin decreasing the Keppra, as it will be obvious that the new drug is doing the job and the Keppra will be unnecessary.
If, for whatever reason, the clobazam does not work, in three months Dr. Burris wants Lucas to have a 23 hour EEG at St. Louis Children's Hospital. We would go and stay in a small room and bring his meals and toys and Bumbo (his little blue chair). There would be a crib and, hopefully, a place for Marc and I to sit/sleep as well. Lucas would have the EEG wires attached to his head the entire time and there would be a video camera in the ceiling monitoring his activity and sleep as well. Dr. Burris is intrigued that Lucas' seizures involve a turn of the head to the Left while moving the right leg/arm. This suggests involvement of both hemispheres of the brain. Lucas' brain, however, is unlike any other and I wonder if the seizures are originating in the brain matter that runs up through the middle of this head like a peninsula. He had no seizures during either of the EEGs he had in the past, so it remains unclear where in the brain they originate.
We are hopeful. Lucas is still doing so wonderfully in spite of the increase in seizures and we rejoice in that. He is still working hard at standing and sitting and is doing better with his looking at us and other things. He is also chattering up a bunch, Ds, Bs, Ns, Ms, Rs and some Ls too are coloring his speech. Last week, it began to seem that he is connecting the fact that "Dada" is Marc. Very exciting! He also, just this morning, finally, cut through his top right gum line with his first molar. His gums have been swollen for months, all four, but finally we got one through!
That's about it for Lucas for now, but I wanted to invite you all to rejoice with us also that my cousin's son Cooper has come home! He is doing really well and his family is glad to finally have him where they have wanted him for so long. THank you, thank you, thank you for all your prayers for them. I know they appreciate it and believe they make a difference.
I added a few more pics to close out September/October if you want to take a look. I pray you are all well and every day recognize the blessings that surround you, that you enjoy!
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| September / October 2008 |
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