Wanted to share that last night I had one of those moments with Jenelle that just melt your heart. Jenelle had fallen asleep on the floor, so I went to pick her up to put her to bed for the night. As I cradled her in my arms and carried her down the hall, she had the biggest smile with her eyes closed! She was sleeping so peacefully... of course, I called to Brett to come see and made her frown and open one eye... but then she just closed her eye again and smiled real big.
She knows she is loved!
Friday, March 26, 2004
Tuesday, March 23, 2004
I found Jenelle's Purpose in Life!
Brett has been reading "The Purpose Driven Life" and I've skimmed the pages a little. He's been struggling of late, wondering what God's purpose is for Jenelle. Me too in fact, I just can't imagine why she must go through the things she does. Then I had a conversation with my next door neighbor, who isn't that religious, who had this to say...
I told my neighbor this weekend that last Friday, one of the attorneys I work for, and really enjoy quite a bit, gave his 2 weeks notice. He is recently married, no children, no debt, and has a care-free, fun loving attitude. He is quitting because he doesn't want to put in the required hours anymore, and wants a change in his life. He is taking 2 months off to travel around the world, and then may start his own practice doing public interest law. Quite a difference from our practice. I asked him why he made this decision and he told me it was because of Jenelle.
I felt sorta weird with that response, he only met Jenelle days after she was born, but obviously like everyone else at my firm has followed her saga. He said watching her struggle, and the decisions we've so "gracefully" made, he decided life was too short. He no longer wants to put in long hours. He wants to enjoy his wife while he has little committments and lots of energy. He is thankful for what he has and through Jenelle has learned he needs to enjoy it.
I am bummed to lose such a fun guy. After telling this to my next door neighbor, and she said... "Don't you see? That is Jenelle's purpose in life. She is here to make others step back and look at their life and re-evaluate their values. She has saved this person and changed his life dramatically just by being your child and going through the challenges she is facing. While is seems cruel to her, you can see the beauty she leaves in the people she touches. Wow... I never saw it that way. It still seems unfair.
I told my neighbor this weekend that last Friday, one of the attorneys I work for, and really enjoy quite a bit, gave his 2 weeks notice. He is recently married, no children, no debt, and has a care-free, fun loving attitude. He is quitting because he doesn't want to put in the required hours anymore, and wants a change in his life. He is taking 2 months off to travel around the world, and then may start his own practice doing public interest law. Quite a difference from our practice. I asked him why he made this decision and he told me it was because of Jenelle.
I felt sorta weird with that response, he only met Jenelle days after she was born, but obviously like everyone else at my firm has followed her saga. He said watching her struggle, and the decisions we've so "gracefully" made, he decided life was too short. He no longer wants to put in long hours. He wants to enjoy his wife while he has little committments and lots of energy. He is thankful for what he has and through Jenelle has learned he needs to enjoy it.
I am bummed to lose such a fun guy. After telling this to my next door neighbor, and she said... "Don't you see? That is Jenelle's purpose in life. She is here to make others step back and look at their life and re-evaluate their values. She has saved this person and changed his life dramatically just by being your child and going through the challenges she is facing. While is seems cruel to her, you can see the beauty she leaves in the people she touches. Wow... I never saw it that way. It still seems unfair.
Friday, March 19, 2004
We met with Dr. Shields at UCLA yesterday to update him on Jenelle. He is going have us come back up in the next two weeks to run some more tests. He wants his own 24 hour Video EEG, another MRI and a PET scan, which is a type of scan used to show activity in the brain - Jenelle hasn't had one yet. We brought him up to date on Jenelle's seizures and her developmental status since our last visit in September, and he really zoned in on the fact that Jenelle favors her left side (something she has done since she was only days old.) He said that is probably a very big clue that there is probably something wrong with the left hemisphere of her brain.
He mentioned that surgery to remove part or half of her brain is now an option, and one that has a very short window of opportunity. They prefer to do this surgery between ages 18 months and 2 years of age so there is a better developmental outcome. I reminded him that last time we saw him, he said surgery wasn't an option, and he agreed that was true for Infantile Spasms, but says that she has probably grown past that now. He said that UCLA is the leader in the country right now for performing a new surgery on patients with generalized seizures (seizures that come from all parts of the brain) and that they have been very successful. He wants to run the tests first to determine if she is a good candidate, and also said we still can't rule out the Ketogenic Diet or a Vagal Nerve Stimulator (VNS) which is like a pace maker for the brain - a device that short circuits the seizures before they happen. The problem with the Diet is that UCLA has a very, very long waiting list, and he also agrees somewhat with Dr. Phillips in that she may not be metabolically stable to start it. He said we would probably never be able to pinpoint an exact metabolic problem with Jenelle. He thought she was pretty delayed developmentally, but that most likely her abnormal EEG (the Hyppsarythmia pattern) is the cause of her delays. Once we can give her some normal brain waves, she may start to progress. Continuing on her drugs may also be an option.
Seven months ago, when we were first introduced to seizures and Jenelle's diagnosis, I read all about surgical solutions I wanted to vomit. I couldn't imagine making such a decision as to agree to let doctors remove half your child's brain. However, now that we're on our 5th drug and all the difficulties we've encountered in the past few months, I realize it may be her best option if it looks like something that she could benefit from. He said before making that decision, he would have us meet with families that have done the surgery, as well as other counselors that will help us make that decision. I got a message last night from a parent that had the surgery done for her child, and she say it is "frightening but awesome" at the same time. This Mother told me that upon waking from surgery, it was very apparent that her child was already doing better and controlling both sides of the body very well. In fact, the side of the brain they removed had not been working, so the "good" side of his brain had already started to compensate and was already controlling the other side of the body. They said the PET scan made their decision very obvious in that they knew the one side of the brain wasn't working. Her son is walking, talking and living a normal life. If we must choose surgery, I hope our tests are just as obvious.
So, for now we're just waiting to hear from UCLA as to when we need to come back for testing. He said their hospital was full right now with RSV patients, but it would most likely been in the next two weeks. We need to move quickly, since Jenelle is almost 17 months old and we are quickly approaching the "window of opportunity."
He mentioned that surgery to remove part or half of her brain is now an option, and one that has a very short window of opportunity. They prefer to do this surgery between ages 18 months and 2 years of age so there is a better developmental outcome. I reminded him that last time we saw him, he said surgery wasn't an option, and he agreed that was true for Infantile Spasms, but says that she has probably grown past that now. He said that UCLA is the leader in the country right now for performing a new surgery on patients with generalized seizures (seizures that come from all parts of the brain) and that they have been very successful. He wants to run the tests first to determine if she is a good candidate, and also said we still can't rule out the Ketogenic Diet or a Vagal Nerve Stimulator (VNS) which is like a pace maker for the brain - a device that short circuits the seizures before they happen. The problem with the Diet is that UCLA has a very, very long waiting list, and he also agrees somewhat with Dr. Phillips in that she may not be metabolically stable to start it. He said we would probably never be able to pinpoint an exact metabolic problem with Jenelle. He thought she was pretty delayed developmentally, but that most likely her abnormal EEG (the Hyppsarythmia pattern) is the cause of her delays. Once we can give her some normal brain waves, she may start to progress. Continuing on her drugs may also be an option.
Seven months ago, when we were first introduced to seizures and Jenelle's diagnosis, I read all about surgical solutions I wanted to vomit. I couldn't imagine making such a decision as to agree to let doctors remove half your child's brain. However, now that we're on our 5th drug and all the difficulties we've encountered in the past few months, I realize it may be her best option if it looks like something that she could benefit from. He said before making that decision, he would have us meet with families that have done the surgery, as well as other counselors that will help us make that decision. I got a message last night from a parent that had the surgery done for her child, and she say it is "frightening but awesome" at the same time. This Mother told me that upon waking from surgery, it was very apparent that her child was already doing better and controlling both sides of the body very well. In fact, the side of the brain they removed had not been working, so the "good" side of his brain had already started to compensate and was already controlling the other side of the body. They said the PET scan made their decision very obvious in that they knew the one side of the brain wasn't working. Her son is walking, talking and living a normal life. If we must choose surgery, I hope our tests are just as obvious.
So, for now we're just waiting to hear from UCLA as to when we need to come back for testing. He said their hospital was full right now with RSV patients, but it would most likely been in the next two weeks. We need to move quickly, since Jenelle is almost 17 months old and we are quickly approaching the "window of opportunity."
Tuesday, March 16, 2004
I keep saying, it is the luck of the Irish. We got an appointment at UCLA for this Thursday, March 18. When I first called, the only available appointment was August 2 - 6 months away! I called back again to listen to the voicemail for the Neurology Department (it had a bunch of phone numbers I wanted to write down) and got a real person instead! By luck, they had an opening for Thursday!
Dr. Shields is very straight forward, and we recall last time he didn't hold anything back. We're anxious to hear his ideas, but also hesitant as we're pretty sure some of the news might be tough. I'll try to update when I can.
As for some good news, Jenelle has not had any noticeable seizures since starting the Klonopin. I've seen a couple of small jerks that look like her quick seizures, but nothing longer than a few seconds. She laughs a lot more and smiles more frequently, but is having bouts of insomnia, and Brett and I are recovering from a 4:00am wake up call this morning - yawn!
Dr. Shields is very straight forward, and we recall last time he didn't hold anything back. We're anxious to hear his ideas, but also hesitant as we're pretty sure some of the news might be tough. I'll try to update when I can.
As for some good news, Jenelle has not had any noticeable seizures since starting the Klonopin. I've seen a couple of small jerks that look like her quick seizures, but nothing longer than a few seconds. She laughs a lot more and smiles more frequently, but is having bouts of insomnia, and Brett and I are recovering from a 4:00am wake up call this morning - yawn!
Friday, March 12, 2004
We met with Dr. Phillips today as a regular appointment for Jenelle, but also as a follow up to her recent hospital stay. The short story is, he is out of ideas and wants us to go back to see Dr. Shields at UCLA to see what he thinks about Jenelle.
Some of Jenelle's recent metabolic tests (taken in January) came back abnormal, but nothing really pointed to any real diagnosis. In fact, we've repeated the same metabolic tests 3 times, and each time they were abnormal, but the abnormal areas were different with each test. He has no clue why this is!
He reviewed each and every page of Jenelle's 48 hour EEG and said that there were no seizures, even though I the seizures that I saw. He disagreed with Dr. Trice in that he doesn't think the seizures are coming from deep in the brain and therefore not registering on the EEG. When we describe her seizures, especially her new grand mals which we didn't catch on the latest EEG, he agrees that it sounds like a seizure, but he is baffled as to why they don't register on the EEG. He even said in reviewing the results, he thought he saw some seizure activity, but then on video, she did not appear to be seizing in the normal fashion associated with such an abnormal pattern. He put us on a new drug called Klonopin (which has a component of valium in it), and we are going to take her off the Topamax because it clearly isn't working.
We discussed the Ketogenic diet. He said it is not an option right now because she has too metabolic instabilities. The diet can cause serious metabolic abnormalities, so it is best to wait for now. I disagree somewhat with this because I've read the diet is only used for kids with difficult to control seizures. If her seizures are so uncontrollable, wouldn't that be all the more reason to try to diet? We understand his decision.
Dr. Phillips has often suggested that I be a stay at home Mom with Jenelle. We talked about this and I asked him directly if he was keeping something from us. He said he wasn't keeping anything from us, but felt that some kids do better with the one on one attention. We then talked about Jenelle's developmental regression. He is very worried about this, and feels that she is going in the wrong direction. Jenelle's PT has noted that she is weak on her right side, and I've noticed that she is no longer rolling from tummy to back, something she used to do with ease. This could be because of the grand mals, or because Jenelle has an undiagnosed degenerative neurological condition. The later of course is the worst case scenario, but it does mean that if her condition is degenerative, she will regress until she dies. He said we weren't there yet, but he is concerned because she is regressing, and since we don't have a diagnosis, this (the degenerative neurological condition) is not something we can rule out. He also said that he would strongly advise staying home with Jenelle so we didn't have any regrets should an early death be the outcome. I told him about some of the new things Jenelle was doing. He was happy to hear it and told me that I really only tell him the bad stuff. He felt much better about things since she is progressing in other ways. Of course we aren't at the worst case scenario yet, and I have no regrets working because Jenelle is getting more treatment at daycare and her special school than I could give her if we stayed at home. Those therapies benefit her more.
I put in a call to Dr. Shield's nurse at UCLA who was gone. Hopefully we'll hear from her soon and we can get in quickly. We are going to see Dr. Phillips again in 3 weeks because he wants to closely monitor Jenelle on the Klonopin. I am also looking into places outside California like Johns Hopkins or Mayo Clinic to see if they can review her records. I think at this point Jenelle is such a mystery, I'm sure getting outside ideas about her health may be productive.
Some of Jenelle's recent metabolic tests (taken in January) came back abnormal, but nothing really pointed to any real diagnosis. In fact, we've repeated the same metabolic tests 3 times, and each time they were abnormal, but the abnormal areas were different with each test. He has no clue why this is!
He reviewed each and every page of Jenelle's 48 hour EEG and said that there were no seizures, even though I the seizures that I saw. He disagreed with Dr. Trice in that he doesn't think the seizures are coming from deep in the brain and therefore not registering on the EEG. When we describe her seizures, especially her new grand mals which we didn't catch on the latest EEG, he agrees that it sounds like a seizure, but he is baffled as to why they don't register on the EEG. He even said in reviewing the results, he thought he saw some seizure activity, but then on video, she did not appear to be seizing in the normal fashion associated with such an abnormal pattern. He put us on a new drug called Klonopin (which has a component of valium in it), and we are going to take her off the Topamax because it clearly isn't working.
We discussed the Ketogenic diet. He said it is not an option right now because she has too metabolic instabilities. The diet can cause serious metabolic abnormalities, so it is best to wait for now. I disagree somewhat with this because I've read the diet is only used for kids with difficult to control seizures. If her seizures are so uncontrollable, wouldn't that be all the more reason to try to diet? We understand his decision.
Dr. Phillips has often suggested that I be a stay at home Mom with Jenelle. We talked about this and I asked him directly if he was keeping something from us. He said he wasn't keeping anything from us, but felt that some kids do better with the one on one attention. We then talked about Jenelle's developmental regression. He is very worried about this, and feels that she is going in the wrong direction. Jenelle's PT has noted that she is weak on her right side, and I've noticed that she is no longer rolling from tummy to back, something she used to do with ease. This could be because of the grand mals, or because Jenelle has an undiagnosed degenerative neurological condition. The later of course is the worst case scenario, but it does mean that if her condition is degenerative, she will regress until she dies. He said we weren't there yet, but he is concerned because she is regressing, and since we don't have a diagnosis, this (the degenerative neurological condition) is not something we can rule out. He also said that he would strongly advise staying home with Jenelle so we didn't have any regrets should an early death be the outcome. I told him about some of the new things Jenelle was doing. He was happy to hear it and told me that I really only tell him the bad stuff. He felt much better about things since she is progressing in other ways. Of course we aren't at the worst case scenario yet, and I have no regrets working because Jenelle is getting more treatment at daycare and her special school than I could give her if we stayed at home. Those therapies benefit her more.
I put in a call to Dr. Shield's nurse at UCLA who was gone. Hopefully we'll hear from her soon and we can get in quickly. We are going to see Dr. Phillips again in 3 weeks because he wants to closely monitor Jenelle on the Klonopin. I am also looking into places outside California like Johns Hopkins or Mayo Clinic to see if they can review her records. I think at this point Jenelle is such a mystery, I'm sure getting outside ideas about her health may be productive.
Tuesday, March 09, 2004
Again, Jenelle keeps us on our toes. After our event three weeks ago at the ER when she had 4 grand mals in a day, Jenelle went 7 days without a seizure! We were thrilled, and hoped that her new medication (Topamax) was working. However, last Tuesday, Jenelle woke herself with another grand mal that lasted almost 3 minutes. I stayed with her that morning, and she seemed fine. Later that day, during a session of Physical Therapy, her therpist mentioned that she noticed some weakness on Jenelle's right side. Jenelle has always been weak on her right side, but had improved. Then, Jenelle had another grand mal on Thursday and Dr. Phillips sent us to the ER. New seizures and weakness on one side guaranteed us a CT scan and hospital stay.
Jenelle was admitted to Children's Hospital Thursday night, and stayed until Monday for observation. In addition to her CT scan, they ran a 48 hour Video EEG and of course according to Murphy's Law, she did not have a grand mal for them to observe. Her "usual" myoclonic seizures had increased, and some lasted as long as 2 minutes. I marked many of them on the first 24 hours of the EEG, but according to our Neuro, they did not show up as seizures on the EEG. This could simply be because her seizures are coming from deep inside her brain and thus cannot register on the EEG. We're not sure what that means. Although I feel we left the hospital without any answers, Brett pointed out that we have some relief in that her CT scan did not show a stroke, tumor or brain bleed. He is absolutely right in that sometimes no news is good news. Jenelle was also teething over the previous weekend and that could have lowered her seizure threshold. Another possibility is that as Jenelle "grows up", her seizures will change as well and we just have to get used to this type of seizure. They increased her Topamax from 15mg a day to 45 mg a day, and she seems to be stable.
We will see Dr. Phillips again this Friday, and hopefully I will have more to report. Jenelle did make it to her first day at her new school last Wednesday, but I don't know how it went because she missed her second day. I'll try to update on that as well.
Jenelle was admitted to Children's Hospital Thursday night, and stayed until Monday for observation. In addition to her CT scan, they ran a 48 hour Video EEG and of course according to Murphy's Law, she did not have a grand mal for them to observe. Her "usual" myoclonic seizures had increased, and some lasted as long as 2 minutes. I marked many of them on the first 24 hours of the EEG, but according to our Neuro, they did not show up as seizures on the EEG. This could simply be because her seizures are coming from deep inside her brain and thus cannot register on the EEG. We're not sure what that means. Although I feel we left the hospital without any answers, Brett pointed out that we have some relief in that her CT scan did not show a stroke, tumor or brain bleed. He is absolutely right in that sometimes no news is good news. Jenelle was also teething over the previous weekend and that could have lowered her seizure threshold. Another possibility is that as Jenelle "grows up", her seizures will change as well and we just have to get used to this type of seizure. They increased her Topamax from 15mg a day to 45 mg a day, and she seems to be stable.
We will see Dr. Phillips again this Friday, and hopefully I will have more to report. Jenelle did make it to her first day at her new school last Wednesday, but I don't know how it went because she missed her second day. I'll try to update on that as well.
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