Roxanne update review
For those who've recently heard about Roxanne's condition, here are some emails that sum up the last few weeks.
10/29/06
Roxanne's condition is basically unchanged since my last note. Her neurologist was hoping to have seen more relief from the seizures on her current combination of medications, and will probably switch things up next week. The good news is she doesn't seem to have had any adverse affects from taking the drugs, and her health is good.
Many folks have been asking how Dan and I are holding up. Actually, we are doing remarkably well under the circumstances. We are trying to eat healthful, nourishing food at every meal, with delicious treats to make us smile. We have friends come to visit almost every day, bringing food and offering help with chores or holding Roxy. I still feel like a diva when I ask a friend to take out my garbage, but folks have been so loving and gracious, you'd think it was our normal routine.
With the goal of feeding not only our bodies, but also our spirits, Dan and I went to see My Fair Lady last Thursday at Signature Theater, where we have season tickets. The show was impeccably produced and performed, as expected, and we felt wonderfully normal being out on the town while Roxy stayed safely at home with some dear friends.
Taking care of Roxanne's epilepsy is going to be a marathon, not a sprint, so we are learning to shift out of "emergency" mode and into a lifestyle with more balance. We continue to learn more about her condition as we read more articles and talk to other parents of children with IS.
Again, thank you all for your prayers, well wishes, and healing thoughts. I truly believe they are making a difference in our lives. Every single bit helps.
10/24/06
I can't believe that just two weeks ago, Roxanne was admitted to the hospital for her seizures. It feels like a lifetime ago. The learning curve for her condition, infantile spasms (IS), has been steep, but I've been lucky enough to find a listserv of parents with children who have IS. Through emails and phone calls, I've learned more from them than I think I could have from 99% of medical professionals. One of the members of the list compiled and wrote a very comprehensive article. In addition, here is a website that's very technical. Proceed at your own risk: http://www.ilae-epilepsy.org/Visitors/Centre/ctf/west_syndrome.cfm
Roxanne is holding steady. Her seizures are continuing, but we hope that the right combination of medicines will reduce them significantly. Otherwise, she is healthy, eating and sleeping well. To help focus your prayers, visualizations, etc., here are our hopes:
- That Roxy have as few seizures per day as possible.
- Few/no adverse reactions to the medications she is taking.
- That the seizures have as little impact on her developing mind as possible.
- That her health, otherwise, remains good.
- That Dan's and my health (mind, body, spirit) remain good.
- That Dr. Vining at Johns Hopkins can offer additional insight and treatment.
One of the drugs Roxy is taking suppresses her immune system, and we've postponed her immunizations until things calm down. Therefore, she is basically grounded. I'll probably be calling upon some of my local friends to come sit with her while I run errands, or vice versa, run my errands while I sit with her. The last thing she needs is to catch a virus in the midst of all this, so I can't justify taking her on a trip to the grocery store if I can avoid it. If you come to visit (and please do, you keep me sane), please be sure to wash your hands before you hug Roxanne. And if you or a member of your family is sick, please postpone your visit until you are better.
Once again, thank you for all your love, prayers, support, and help. The energy you are sending me has allowed me to function on 4 hours of sleep per night since this all started.
10/22/06
At the risk of sounding like a broken record: thank you, thank you, thank you for everything you are doing to help Baby Roxanne, Dan and I cope with her illness. We are so very blessed to have such a vast, loving community. Thank you for your prayers/well wishes/healing thoughts. Thank you for taking a turn with Roxy so we can talk with her doctors, take a nap, or run errands. Thank you for the healthy food that keeps Dan and me strong, plus the cookies, flowers and visits. It took this scary time in our lives to fully understand how much love and support we have.
On Friday, 10/20, we had a great meeting with Roxanne's pediatric neurologist, Dr. Y, who is honestly the most warm, human, engaging doctor I've ever met. Here's what we know so far: Roxanne has epilepsy, a broad term that means she has recurrent seizures. Specifically, she has a rare type called infantile spasms (IS), a condition that's often misdiagnosed, and difficult to treat with medication. The seizures themselves aren't the main concern, but rather, what they are doing to her developing brain. Dr. Y, Dan and I decided to be more aggressive with her medicine, to reduce the number of seizures per day. We don't yet know what is causing Roxanne's seizures, and we might never know. The specialist at Johns Hopkins University, Dr. V, is a pediatric neurologist with a sub-specialty in epilepsy, so we are hoping she might be able to provide more answers and treatment options. Our appointment there is November 14, and in the meantime, we will be in daily contact with Dr. Y via email and bi-weekly (or more if needed) in his office. We will also have regular visits to Roxy's pediatrician to monitor her health while on the medications.
10/19/06
No new news to share.
Roxanne's condition is about the same, and we are checking in with her neurologist daily. We are just happy to be home.
For the most recent photos of her before she went into the hospital, go to:
http://www.flickr.com/photos/97874694@N00/
10/15/06
Thank you again for all your support. The prayer, positive vibes, visits, messages, and food have been keeping Dan and I sane during this very stressful time.
The good news is that Roxanne is back at home today. This morning, Roxanne's neurologist decided her seizures had stabilized to an acceptable level, and released her to outpatient care Dan and I will have to administer medicine to her throughout the day and night, and will have to watch her around the clock to note the type, time, and progression of her seizures, but we would still rather be home than in the hospital.
The bad news is that this is just the beginning of trying to figure out what is wrong with Roxy. The medications reduce the seizures, but they can't be taken for more than 2 -3 months, due to harmful side effects. We have an appointment with one of the top specialists in the country who works with infants/children with seizures, located at Johns Hopkins University Hospital. Whether Roxy will be admitted to the hospital at JHU is yet to be seen.
For now, we are holding steady. You can reply to this Yahoo account now that I have email access. If you'd like to come visit, and don't mind hanging out with very tired people, please do so.
Again, thanks for all your loving thoughts and prayers.
10/12/06
Thank you for all the love, prayers and support you are sending. They are helping Dan, Roxanne, and me get through this ordeal.
Roxy had an MRI this morning (she did fine), and analysis and discussion between the radiologist and neurologist is pending.
Next steps will include consultation with high-caliber specialists at Johns Hopkins University. We have already been in touch with the correct people there, and Roxy will be seen in the near future.
Again, thank you for everything. I've been getting your text and voice messages all day, plus emails to this account at night, and your support warms my heart.
10/11/06
No new news to share about Roxanne today. She has had lots of bloodwork, and EEG, and a spinal tap so far. Tomorrow she is due for an MRI, and hopefully it won't be postponed for availability of the machine.
Dan and I are holding up the best we can. We are coming home to sleep and shower, but the rest of the time, we are at the hospital. If anybody would like to come to Fairfax Hospital to visit, we would welcome a friendly face. We will probably be there until Friday, in the Women and Children's Center (blue entrance/blue parking garage).
We would also like to get text or voice mails just so we don't feel so alone in all this. I check this yahoo account when I come home, and there has to be a way to send SMS messages to my phone, but I haven't quite figured it out). Thanks.
10/29/06
Roxanne's condition is basically unchanged since my last note. Her neurologist was hoping to have seen more relief from the seizures on her current combination of medications, and will probably switch things up next week. The good news is she doesn't seem to have had any adverse affects from taking the drugs, and her health is good.
Many folks have been asking how Dan and I are holding up. Actually, we are doing remarkably well under the circumstances. We are trying to eat healthful, nourishing food at every meal, with delicious treats to make us smile. We have friends come to visit almost every day, bringing food and offering help with chores or holding Roxy. I still feel like a diva when I ask a friend to take out my garbage, but folks have been so loving and gracious, you'd think it was our normal routine.
With the goal of feeding not only our bodies, but also our spirits, Dan and I went to see My Fair Lady last Thursday at Signature Theater, where we have season tickets. The show was impeccably produced and performed, as expected, and we felt wonderfully normal being out on the town while Roxy stayed safely at home with some dear friends.
Taking care of Roxanne's epilepsy is going to be a marathon, not a sprint, so we are learning to shift out of "emergency" mode and into a lifestyle with more balance. We continue to learn more about her condition as we read more articles and talk to other parents of children with IS.
Again, thank you all for your prayers, well wishes, and healing thoughts. I truly believe they are making a difference in our lives. Every single bit helps.
10/24/06
I can't believe that just two weeks ago, Roxanne was admitted to the hospital for her seizures. It feels like a lifetime ago. The learning curve for her condition, infantile spasms (IS), has been steep, but I've been lucky enough to find a listserv of parents with children who have IS. Through emails and phone calls, I've learned more from them than I think I could have from 99% of medical professionals. One of the members of the list compiled and wrote a very comprehensive article. In addition, here is a website that's very technical. Proceed at your own risk: http://www.ilae-epilepsy.org/Visitors/Centre/ctf/west_syndrome.cfm
Roxanne is holding steady. Her seizures are continuing, but we hope that the right combination of medicines will reduce them significantly. Otherwise, she is healthy, eating and sleeping well. To help focus your prayers, visualizations, etc., here are our hopes:
- That Roxy have as few seizures per day as possible.
- Few/no adverse reactions to the medications she is taking.
- That the seizures have as little impact on her developing mind as possible.
- That her health, otherwise, remains good.
- That Dan's and my health (mind, body, spirit) remain good.
- That Dr. Vining at Johns Hopkins can offer additional insight and treatment.
One of the drugs Roxy is taking suppresses her immune system, and we've postponed her immunizations until things calm down. Therefore, she is basically grounded. I'll probably be calling upon some of my local friends to come sit with her while I run errands, or vice versa, run my errands while I sit with her. The last thing she needs is to catch a virus in the midst of all this, so I can't justify taking her on a trip to the grocery store if I can avoid it. If you come to visit (and please do, you keep me sane), please be sure to wash your hands before you hug Roxanne. And if you or a member of your family is sick, please postpone your visit until you are better.
Once again, thank you for all your love, prayers, support, and help. The energy you are sending me has allowed me to function on 4 hours of sleep per night since this all started.
10/22/06
At the risk of sounding like a broken record: thank you, thank you, thank you for everything you are doing to help Baby Roxanne, Dan and I cope with her illness. We are so very blessed to have such a vast, loving community. Thank you for your prayers/well wishes/healing thoughts. Thank you for taking a turn with Roxy so we can talk with her doctors, take a nap, or run errands. Thank you for the healthy food that keeps Dan and me strong, plus the cookies, flowers and visits. It took this scary time in our lives to fully understand how much love and support we have.
On Friday, 10/20, we had a great meeting with Roxanne's pediatric neurologist, Dr. Y, who is honestly the most warm, human, engaging doctor I've ever met. Here's what we know so far: Roxanne has epilepsy, a broad term that means she has recurrent seizures. Specifically, she has a rare type called infantile spasms (IS), a condition that's often misdiagnosed, and difficult to treat with medication. The seizures themselves aren't the main concern, but rather, what they are doing to her developing brain. Dr. Y, Dan and I decided to be more aggressive with her medicine, to reduce the number of seizures per day. We don't yet know what is causing Roxanne's seizures, and we might never know. The specialist at Johns Hopkins University, Dr. V, is a pediatric neurologist with a sub-specialty in epilepsy, so we are hoping she might be able to provide more answers and treatment options. Our appointment there is November 14, and in the meantime, we will be in daily contact with Dr. Y via email and bi-weekly (or more if needed) in his office. We will also have regular visits to Roxy's pediatrician to monitor her health while on the medications.
10/19/06
No new news to share.
Roxanne's condition is about the same, and we are checking in with her neurologist daily. We are just happy to be home.
For the most recent photos of her before she went into the hospital, go to:
http://www.flickr.com/photos/97874694@N00/
10/15/06
Thank you again for all your support. The prayer, positive vibes, visits, messages, and food have been keeping Dan and I sane during this very stressful time.
The good news is that Roxanne is back at home today. This morning, Roxanne's neurologist decided her seizures had stabilized to an acceptable level, and released her to outpatient care Dan and I will have to administer medicine to her throughout the day and night, and will have to watch her around the clock to note the type, time, and progression of her seizures, but we would still rather be home than in the hospital.
The bad news is that this is just the beginning of trying to figure out what is wrong with Roxy. The medications reduce the seizures, but they can't be taken for more than 2 -3 months, due to harmful side effects. We have an appointment with one of the top specialists in the country who works with infants/children with seizures, located at Johns Hopkins University Hospital. Whether Roxy will be admitted to the hospital at JHU is yet to be seen.
For now, we are holding steady. You can reply to this Yahoo account now that I have email access. If you'd like to come visit, and don't mind hanging out with very tired people, please do so.
Again, thanks for all your loving thoughts and prayers.
10/12/06
Thank you for all the love, prayers and support you are sending. They are helping Dan, Roxanne, and me get through this ordeal.
Roxy had an MRI this morning (she did fine), and analysis and discussion between the radiologist and neurologist is pending.
Next steps will include consultation with high-caliber specialists at Johns Hopkins University. We have already been in touch with the correct people there, and Roxy will be seen in the near future.
Again, thank you for everything. I've been getting your text and voice messages all day, plus emails to this account at night, and your support warms my heart.
10/11/06
No new news to share about Roxanne today. She has had lots of bloodwork, and EEG, and a spinal tap so far. Tomorrow she is due for an MRI, and hopefully it won't be postponed for availability of the machine.
Dan and I are holding up the best we can. We are coming home to sleep and shower, but the rest of the time, we are at the hospital. If anybody would like to come to Fairfax Hospital to visit, we would welcome a friendly face. We will probably be there until Friday, in the Women and Children's Center (blue entrance/blue parking garage).
We would also like to get text or voice mails just so we don't feel so alone in all this. I check this yahoo account when I come home, and there has to be a way to send SMS messages to my phone, but I haven't quite figured it out). Thanks.
posted by Talentedhands at
1:00 AM
0 Comments:
Post a Comment
<< Home