Much like the boy who cried wolf, I am going back once again on my previous statement about no further testing for Owen. Our goals, comfort and quality of life, still remain the same, but we are still searching for answers with Owen. Next Wednesday, February 1st, we will be taking Owen to meet Dr. Eichler at the MGH Leukodystrophy Clinic.
Yes, you read that correctly, there is a leukodystrophy clinic, with a world renowned expert in the field, located in Boston. Pete and I have been kicking around the idea of a second opinion for awhile now, but the events of a few weeks ago really spurred us into action. I have accepted all of the terrible news we have been given about Owen. When it came down to what I thought were his final days with us, I realized I had way too many unanswered questions about Owen to be at peace with letting him go so soon.
Here is our hope for next Wednesday: we hope the doctor is intrigued with Owen. He was diagnosed at 2 months, which is very young for any child and this speaks to the severity of his case. We hope he has a few new ideas about what type of leukodystrophy Owen has. We hope he can give us a clearer picture about what Owen's future holds in terms of gaining skills socially, developmentally, and physically. We hope he can narrow down a life expectancy range for Owen. We hope he can provide us with ideas and resources to help us be the best parents to Owen as we can be. We hope he has some suggestions for medications for Owen that will remove the irritability, but not the personality Owen is revealing to us. These are our best case scenario goals for the meeting.
Realistically, we would like to have another set of eyes read all of Owen's MRIs, CT Scan, blood work and lumbar puncture results, and case notes. We hope that Dr. Eichler will be able confirm what we already believe; that Owen's current team of doctors are doing an amazing job treating our little boy. We need someone new to tell us all of the terrible information we learned on November 2nd over again so that we really know it is true.
Dr. T, Owen's current neurologist, is an amazing man. He is available to us on a daily basis to answer questions and provide us with information and help with Owen. One time, he called the house and I kept him on the phone for an hour asking him over and over the same questions about Owen ( I would just word it differently to see if I would get a different answer) and his overall prognosis. Dr. K is Owen's genetic/metabolic doctor and we are very happy with her too. On December 9th, the last time Owen had a serious round of testing, she gave me a sheet of paper with 21 different diseases and categories for me to take home. These were all of the things they were testing Owen for. It provided me with hours of googling material and really helped the obsessive side of my brain that wants to figure Owen out. Karen, Owen's palliative care doctor, is an angel. She is the most dedicated person I have ever met and is just one person, of many, who has helped us keep it together over the past few months.
Every day is a challenge with Owen. I hate the unknown, all the questions that do not have answers. Hopefully, this appointment will help to solve the mystery that is Owen O'Donnell Marshall.
Friday, January 27, 2012
Sunday, January 22, 2012
Likes and Dislikes
Sometimes I forget what I have shared about Owen's abilities, or lack thereof, so here is a brief synopsis. Owen has very low muscle tone (i.e. he is floppy), but has excessive tensor tone (I think that is what it is called). Basically, when he tries to engage his muscles voluntarily, the excessive tone kicks in (involuntarily) and makes him become incredibly stiff. This is still being debated in terms of how much discomfort he feels, but it has been likened to a muscle cramp. I've had one of those- they hurt. Owen has no neck control and has very limited or no vision. We don't know for sure what he can see, but his eyes do not track and he gives us zero indication that he can see anything. Owen has very little social response. We believe that we can tickle him and occasionally make him laugh. We do feel confident he can hear. He will turn his head to your voice if he is in the right mood. Here are Owen's likes and dislikes.
I will start with the list of dislikes since I am very familiar with them. Owen may struggle to accomplish many skills, but crying is one he has mastered. He does not tolerate swings, bouncers, or anything like that due to the excessive tone and lack of vision. When forced into a semi-reclined or seated position, the tone kicks in and he becomes stiff as a board and screams. The motion of these items are also disorientating to him because he doesn't know how to process the sensation of movement since he cannot see. Fun little jiggly toys do nothing to entertain him. Tummy time does not work due to lack of head control. Right now, someone reading this blog is thinking: we should do more tummy time if he doesn't have head control, but unfortunately, this is a neuro problem and related to his leukodystrophy. It has been shared with us that if Owen doesn't show signs of developing head control by six months of age then it is a good bet that he never will. He's got one month left. Owen's biggest dislike is being put down. This little boy is a snuggler and demands frequent cuddle time. I love to hold my little boy, but now that we are on month five of this...I would be okay with him letting me put him down. His second biggest dislike is sleeping. We truly have a newborn. Three hours is a big success for us if we can get him to sleep that long at night. Otherwise, a one to two hour stretch at a time is the norm. This is exhausting and is easily Pete and my biggest dislike about Owen. Sorry buddy, but it is true.
Things Owen does like include being held in our living room. Being held in our kitchen. Being held in our playroom. Being held on our deck when the weather is warm. Sitting in his bathtub for ten minutes or less. Being held in any of the rooms on the second floor. Being held on the third floor. Occasionally, laying prone on a changing pad that sits on my kitchen island (haute decor- every kitchen should have one). Occasionally, laying prone on our footstool in our living room. Occasionally is code for ten minutes or less.
In summary, Owen is exhausting. He is also very lovable.
I will start with the list of dislikes since I am very familiar with them. Owen may struggle to accomplish many skills, but crying is one he has mastered. He does not tolerate swings, bouncers, or anything like that due to the excessive tone and lack of vision. When forced into a semi-reclined or seated position, the tone kicks in and he becomes stiff as a board and screams. The motion of these items are also disorientating to him because he doesn't know how to process the sensation of movement since he cannot see. Fun little jiggly toys do nothing to entertain him. Tummy time does not work due to lack of head control. Right now, someone reading this blog is thinking: we should do more tummy time if he doesn't have head control, but unfortunately, this is a neuro problem and related to his leukodystrophy. It has been shared with us that if Owen doesn't show signs of developing head control by six months of age then it is a good bet that he never will. He's got one month left. Owen's biggest dislike is being put down. This little boy is a snuggler and demands frequent cuddle time. I love to hold my little boy, but now that we are on month five of this...I would be okay with him letting me put him down. His second biggest dislike is sleeping. We truly have a newborn. Three hours is a big success for us if we can get him to sleep that long at night. Otherwise, a one to two hour stretch at a time is the norm. This is exhausting and is easily Pete and my biggest dislike about Owen. Sorry buddy, but it is true.
Things Owen does like include being held in our living room. Being held in our kitchen. Being held in our playroom. Being held on our deck when the weather is warm. Sitting in his bathtub for ten minutes or less. Being held in any of the rooms on the second floor. Being held on the third floor. Occasionally, laying prone on a changing pad that sits on my kitchen island (haute decor- every kitchen should have one). Occasionally, laying prone on our footstool in our living room. Occasionally is code for ten minutes or less.
In summary, Owen is exhausting. He is also very lovable.
Wednesday, January 11, 2012
Operation Owen 2012
Owen is a remarkable little guy. In the past 72 hours he has managed to stir up a lot of drama and emotion surrounding his health and life expectancy. He has caused a lot of tears, a flurry of prayers, and has succeeded in aging me another 5-7 years in just a 3 day period. Love this little guy to pieces, but SERIOUSLY, he is rapidly surpassing his big sister in the drama department.
Early Sunday morning was a difficult time for him. He had a bout of inconsolable crying that lasted from 2am until 6am. Pete's mom was doing an overnight shift for us, allowing us to catch up on some sleep. At 6am, Pete woke up to hear Owen crying (I now sleep with ear plugs, so was still happily in dreamland), and came down to check on him. After hearing that he had been crying for 4 hours straight, Pete dug out the bottle of Morphine and gave him a dose. We have had this prescription for a few weeks now and have not used it. Morphine is a big time drug and one that is scary to us. We didn't want to give it to him unless we felt it was the only way to help him. This was by no means his first 4 hour stretch of crying. He has had many during the past 2 months (post diagnosis) and they are heartbreaking to watch. If comfort is the ultimate goal for Owen, then Morphine might be the ticket to providing it.
It succeeded in calming him, but he was still clearly in some kind of distress. All day Sunday and Monday, his breathing was very labored, there was a wheeze to it, he was not interested in eating, and suddenly was sleeping for long stretches of time. In consultation with Dr. F (who I am lucky enough to call Karen and will refer to her as that going forward), she thought he was in the beginning stages of aspiration pneumonia. This was scary news to us because we have been prepared that aspiration pneumonia is most likely going to be the cause of Owen's death. Her recommendation was to bring him to our pediatrician and have him checked to see if that was what Owen was distressed about.
At the pediatrician's office, Owen showed no sign of fever, his oxygen saturation levels were normal, and his lungs where clear. All good news that points away from pneumonia, but his breathing was still very labored. The doctor concluded that this was an upper airway obstruction/ constriction and was due to his advancing neurological problems. More calls were made between the pediatrician, Karen, and me, and the determination was that this was very serious. Owen was baptized on Monday night in our home (the regularly scheduled baptism is on Saturday with his godparents and grandparents), immediate family was called and told about the severity of his illness, food and family arrived in an endless stream, Owen was referred to hospice, and grey hairs continued to sprout in my hair by the hour.
On Tuesday, Pete and I both went to work, while Owen rested in the arms of his Mammie and Mimi (Pete's mom and my mom). Karen came up on Tuesday night to examine him. She brought a gift in a blue box - his farewell gift. Owen sensed her arrival and woke up about 10 minutes before she walked in the door. As I have mentioned before, Owen likes to preform for his doctors, and he did just that while she was here. Bright eyed, alert, congested, and happy. A completely different Owen then the one who had been living with us for the past 3 days. If he could have had a conversation with Karen, I am certain it would have gone something like this: "Seriously, I am fine. Just a little cold. cough, cough. It is wonderful to see you, have I mentioned how pretty you are?" all while batting his long eyelashes at her.
And there you have it. Just a cold. Honestly, this kid! Please know that I am thrilled with this news, but SERIOUSLY! Just a cold. What we have decided is this was Owen's version of a fire drill. I am happy to report that everyone responded to their stations appropriately and in a timely fashion. Operation Owen 2012 was a success and everyone can now return to their regularly scheduled lives. Please be on standby because I know he is going to insist on a few more drills this year. Love that little guy!
Karen took her farewell gift with her when she left. I think that is a pretty good sign.
Early Sunday morning was a difficult time for him. He had a bout of inconsolable crying that lasted from 2am until 6am. Pete's mom was doing an overnight shift for us, allowing us to catch up on some sleep. At 6am, Pete woke up to hear Owen crying (I now sleep with ear plugs, so was still happily in dreamland), and came down to check on him. After hearing that he had been crying for 4 hours straight, Pete dug out the bottle of Morphine and gave him a dose. We have had this prescription for a few weeks now and have not used it. Morphine is a big time drug and one that is scary to us. We didn't want to give it to him unless we felt it was the only way to help him. This was by no means his first 4 hour stretch of crying. He has had many during the past 2 months (post diagnosis) and they are heartbreaking to watch. If comfort is the ultimate goal for Owen, then Morphine might be the ticket to providing it.
It succeeded in calming him, but he was still clearly in some kind of distress. All day Sunday and Monday, his breathing was very labored, there was a wheeze to it, he was not interested in eating, and suddenly was sleeping for long stretches of time. In consultation with Dr. F (who I am lucky enough to call Karen and will refer to her as that going forward), she thought he was in the beginning stages of aspiration pneumonia. This was scary news to us because we have been prepared that aspiration pneumonia is most likely going to be the cause of Owen's death. Her recommendation was to bring him to our pediatrician and have him checked to see if that was what Owen was distressed about.
At the pediatrician's office, Owen showed no sign of fever, his oxygen saturation levels were normal, and his lungs where clear. All good news that points away from pneumonia, but his breathing was still very labored. The doctor concluded that this was an upper airway obstruction/ constriction and was due to his advancing neurological problems. More calls were made between the pediatrician, Karen, and me, and the determination was that this was very serious. Owen was baptized on Monday night in our home (the regularly scheduled baptism is on Saturday with his godparents and grandparents), immediate family was called and told about the severity of his illness, food and family arrived in an endless stream, Owen was referred to hospice, and grey hairs continued to sprout in my hair by the hour.
On Tuesday, Pete and I both went to work, while Owen rested in the arms of his Mammie and Mimi (Pete's mom and my mom). Karen came up on Tuesday night to examine him. She brought a gift in a blue box - his farewell gift. Owen sensed her arrival and woke up about 10 minutes before she walked in the door. As I have mentioned before, Owen likes to preform for his doctors, and he did just that while she was here. Bright eyed, alert, congested, and happy. A completely different Owen then the one who had been living with us for the past 3 days. If he could have had a conversation with Karen, I am certain it would have gone something like this: "Seriously, I am fine. Just a little cold. cough, cough. It is wonderful to see you, have I mentioned how pretty you are?" all while batting his long eyelashes at her.
And there you have it. Just a cold. Honestly, this kid! Please know that I am thrilled with this news, but SERIOUSLY! Just a cold. What we have decided is this was Owen's version of a fire drill. I am happy to report that everyone responded to their stations appropriately and in a timely fashion. Operation Owen 2012 was a success and everyone can now return to their regularly scheduled lives. Please be on standby because I know he is going to insist on a few more drills this year. Love that little guy!
Karen took her farewell gift with her when she left. I think that is a pretty good sign.
Thursday, January 5, 2012
Nothing Nice to Say
For the past two weeks, I have had many blog topics swirling around in my head. The problem is, I don't have anything nice to say. Most of the things I feel like writing about are either gripes about human behavior or topics that are most likely going to upset someone who reads my blog. So I will edit myself and instead share a delightful little nugget I have discovered about my job as a dental hygienist.
At the moment I work on Tuesday, Thursday, and Friday. Thursday isn't a regular working day for me, but I committed to covering one of my co-worker's maternity leaves until February, so for the moment, it is a 3-day work week. On the one hand, there are many positive aspects about going to work. I have a 30 minute commute where no one bothers me unless I choose to call them. I can listen to the radio or just sit quietly. As long as I stay awake, it is problem free. I also get an entire hour to eat my lunch without a little bird-mouth squawking at me for bites of my food. During this blissful hour, I can also check my email without feeling like I am doing something elicit. This past Christmas season, my sister-in-law made a JibJab video with Ellie and some of her friends in it. Ellie is obsessed. We now have to hide our laptop from her because if she spots it, the whining commences. At home, I feel like a misbehaving prisoner if the toddler warden comes marching into the room. It is a duck and hide maneuver to keep the small silver box out of her sight. Another positive about going to work is that I see between 10-12 different faces each day as patients. This provides me with numerous opportunities for adult conversation, but also leads to the a problem I have discovered with my job.
When I returned from my maternity leave with Ellie, I would make each patient suffer through story after story about my beautiful baby girl. Any topic could be easily steered back to a conversation about her and how adorable she is. With Owen, it is an entirely different situation. The week I was supposed to return to work was the week he was first admitted to the hospital. I returned back the following week instead with a very heavy heart after just hearing the devastating news about my son. In marched my first patient and what is the first question out of their mouth? "So, what is new with you?" I will pause now and let you think of all the horrendous things that could have spewed out of my mouth in response to that question. The most professional choice was, "Nothing really, how about you?" This exact senario is repeated 10-12 times a day.
Can you imagine having a beautiful baby and not talking about him? I would say that I do my best to keep about 80% of my patients in the dark about his existence. The other 20% know me enough to remember that I was pregnant the last time they saw me and therefore ask how the new baby is. I do my best to keep it light. I talk about how cute and sweet his is and then quickly move the conversation on to another topic. At this point, I think I have told 3 patients the truth and none of them have left the room without crying. People dread going to the dentist enough as it is, I don't need to compound their displeasure with the sadness of my life. This makes my job, something that should serve as a temporary escape from my reality, a bit of a bummer.
To switch topics and end this blog on a lighter note, I have discovered that Owen is ticklish! I have only been successful in getting a giggle 3 times, but they are amazingly fun! His dimples come out and he scrunches up his body and giggles! It is THE best!
At the moment I work on Tuesday, Thursday, and Friday. Thursday isn't a regular working day for me, but I committed to covering one of my co-worker's maternity leaves until February, so for the moment, it is a 3-day work week. On the one hand, there are many positive aspects about going to work. I have a 30 minute commute where no one bothers me unless I choose to call them. I can listen to the radio or just sit quietly. As long as I stay awake, it is problem free. I also get an entire hour to eat my lunch without a little bird-mouth squawking at me for bites of my food. During this blissful hour, I can also check my email without feeling like I am doing something elicit. This past Christmas season, my sister-in-law made a JibJab video with Ellie and some of her friends in it. Ellie is obsessed. We now have to hide our laptop from her because if she spots it, the whining commences. At home, I feel like a misbehaving prisoner if the toddler warden comes marching into the room. It is a duck and hide maneuver to keep the small silver box out of her sight. Another positive about going to work is that I see between 10-12 different faces each day as patients. This provides me with numerous opportunities for adult conversation, but also leads to the a problem I have discovered with my job.
When I returned from my maternity leave with Ellie, I would make each patient suffer through story after story about my beautiful baby girl. Any topic could be easily steered back to a conversation about her and how adorable she is. With Owen, it is an entirely different situation. The week I was supposed to return to work was the week he was first admitted to the hospital. I returned back the following week instead with a very heavy heart after just hearing the devastating news about my son. In marched my first patient and what is the first question out of their mouth? "So, what is new with you?" I will pause now and let you think of all the horrendous things that could have spewed out of my mouth in response to that question. The most professional choice was, "Nothing really, how about you?" This exact senario is repeated 10-12 times a day.
Can you imagine having a beautiful baby and not talking about him? I would say that I do my best to keep about 80% of my patients in the dark about his existence. The other 20% know me enough to remember that I was pregnant the last time they saw me and therefore ask how the new baby is. I do my best to keep it light. I talk about how cute and sweet his is and then quickly move the conversation on to another topic. At this point, I think I have told 3 patients the truth and none of them have left the room without crying. People dread going to the dentist enough as it is, I don't need to compound their displeasure with the sadness of my life. This makes my job, something that should serve as a temporary escape from my reality, a bit of a bummer.
To switch topics and end this blog on a lighter note, I have discovered that Owen is ticklish! I have only been successful in getting a giggle 3 times, but they are amazingly fun! His dimples come out and he scrunches up his body and giggles! It is THE best!
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