Theparty was held at Pump it Up! and the bounce houses were big enough for Jenelle to enjoy. These photos are out of focus because my camera was on the wrong setting, and they were taken through a net. Still, you can tell Jenelle was having a blast!
Wednesday, January 17, 2007
New Photos of Jenelle
Just wanted to share a couple of photos of Jenelle at her Big Brother's birthday party this past weekend. She had a blast - I think she is actually posing for the camera here!
Theparty was held at Pump it Up! and the bounce houses were big enough for Jenelle to enjoy. These photos are out of focus because my camera was on the wrong setting, and they were taken through a net. Still, you can tell Jenelle was having a blast!
Theparty was held at Pump it Up! and the bounce houses were big enough for Jenelle to enjoy. These photos are out of focus because my camera was on the wrong setting, and they were taken through a net. Still, you can tell Jenelle was having a blast!
Monday, January 15, 2007
"I have a dream..."
Today, we celebrate the life of Dr. Martin Luther King, Jr. A man who courageously campaigned for peaceful ways to acquire equal rights for blacks. I like to think that things are better for blacks these days, and that racism is something you rarely see anymore. I like to think that, but I realize that I am white, and there may still be racism or discrimination still going on against blacks... things that I do not see because I am white.
Sadly, in comparison to Dr. King's dream, I think there is a "group" of individuals in the world that are just beginning their fight for equal rights in our society. These individuls are not separated by color, sex, age or economic status. I'd like to see Dr. King's "Dream" fullfilled in this way...
Sadly, in comparison to Dr. King's dream, I think there is a "group" of individuals in the world that are just beginning their fight for equal rights in our society. These individuls are not separated by color, sex, age or economic status. I'd like to see Dr. King's "Dream" fullfilled in this way...
"I say to you today, my friends, so even though we face the difficulties of today and tomorrow, I still have a dream. It is a dream deeply rooted in the American dream.
I have a dream that one day this nation will rise up and live out the true meaning of its creed: "We hold these truths to be self-evident: that all men are created equal."
I have a dream that one day on the red hills of Georgia [people living with disabilities] will be able to sit down together at the table of brotherhood...
I have a dream that [children with special needs] will one day live in a nation where they will not be judged by [their disability] but by the content of their character.
I have a dream today. "
Tuesday, January 09, 2007
The Ashley Treatment
When I first heard this story, I believe the terminology I used was something like "What Fucking Idiots" Well, I'm here to say I was wrong. And please let me explain why.
I'm sure by now you've heard about this article about the little girl in Washington who's parents elected for her to have surgery to stunt her growth because she is severely brain damaged. Danielle had mentioned it to me briefly and we talked about it. My initial comment to Danielle was, "How horrible. How disgusting. But then again, a medical professional would not do something like this without validation." She agreed.
My initial reaction comes from recently learning that not too long ago (like in the 1920s) mentally retarded children were automatically sterilized by the government so that they could not reproduce and thus "create more mentally retarded children" to burden social services funded by our tax dollars. I'm not sure of the exact dates, but eventually someone fought the system and won. And after that, the government no longer had a say on what could and could not be done to an individual with a disability. They are to be treated as equals, and thus, their bodies and their reproductive organs are their own, regardless of their mental capacity. I learned all this at an Epilepsy Support Group meeting one night while listening to an attorney talk about disability discrimination. I was appalled to learn what was "automatically" done just a few years ago. When hearing about Ashley, the little girl in Washington, my immediate thought was about how this used to be something forced on someone with special needs and mental incapacities. And I do feel strongly, that my Jenelle's body is her own, and not mine to test, toy or play with.
I then found Ashley's parents' blog. And I read their story. And now I can admit that my gut reaction was wrong. I truly believe these parents have researched and studied their options. I truly agree that they are doing this not to decrease their burden as care givers, but to prolong the better quality of life for Ashley. I commend the bravery for making such rash decisions, and for sharing it with the world.
As you know, when Jenelle was 18 months, we took her to UCLA to have her tested to see if she was a candidate for brain surgery to stop her seizures. If she could have it, the surgery would have removed half her brain. Friends and family were aghast at the choice we had to make. Seriously, it is not an easy decision to decide to remove half your child's brain in hopes of giving them a normal, seizure free life. The first time I read about it, I wanted to vomit. But yet, when Jenelle's seizures remained uncontrolled, and we were facing the real possibility that any prolonged seizure could kill her, we were willing to do and try anything. Including removing half her brain. The decision was ultimately made for us when Jenelle was found to not be a candidate. Still, I wonder what people would think.
Jenelle and Ashley are very different. Jenelle is mobile, sitting up, and responsive. Ashley is bedridden and has shown little improvement. I dread the day I will no longer be able to lift Jenelle - yet I know that day is fast approaching. Jenelle is already 40 inches long, and 36 pounds. Height runs on both sides of the family, and I am the shortest woman in my family at 5'8" - most women in my family are 5'10" and 3 are over 6 feet tall. The signs are there that Jenelle will be tall someday. Should we give her the "Ashley Treatment?" I don't know, and I hope we don't. I've often felt it would be convenient to keep Jenelle on the pill when the time comes so we could try to avoid her periods. I've been told it is difficult to get these prescribed for mentally retarded children. At first I thought, "She is my child, why can't I?" but then I realized it was and is her body. As far as removing the uterus - I've read many medical reports showing the good things hormones and estrogen can do for the body. I honesty just don't know!
Although we walk in their shoes - our circumstances are different. I now realize it is not for me to judge any parent's decision about their child. We all do what's best and we all hope for the best. I just thought you should know initially I was wrong, and why I reacted the way I did.
I'm sure by now you've heard about this article about the little girl in Washington who's parents elected for her to have surgery to stunt her growth because she is severely brain damaged. Danielle had mentioned it to me briefly and we talked about it. My initial comment to Danielle was, "How horrible. How disgusting. But then again, a medical professional would not do something like this without validation." She agreed.
My initial reaction comes from recently learning that not too long ago (like in the 1920s) mentally retarded children were automatically sterilized by the government so that they could not reproduce and thus "create more mentally retarded children" to burden social services funded by our tax dollars. I'm not sure of the exact dates, but eventually someone fought the system and won. And after that, the government no longer had a say on what could and could not be done to an individual with a disability. They are to be treated as equals, and thus, their bodies and their reproductive organs are their own, regardless of their mental capacity. I learned all this at an Epilepsy Support Group meeting one night while listening to an attorney talk about disability discrimination. I was appalled to learn what was "automatically" done just a few years ago. When hearing about Ashley, the little girl in Washington, my immediate thought was about how this used to be something forced on someone with special needs and mental incapacities. And I do feel strongly, that my Jenelle's body is her own, and not mine to test, toy or play with.
I then found Ashley's parents' blog. And I read their story. And now I can admit that my gut reaction was wrong. I truly believe these parents have researched and studied their options. I truly agree that they are doing this not to decrease their burden as care givers, but to prolong the better quality of life for Ashley. I commend the bravery for making such rash decisions, and for sharing it with the world.
As you know, when Jenelle was 18 months, we took her to UCLA to have her tested to see if she was a candidate for brain surgery to stop her seizures. If she could have it, the surgery would have removed half her brain. Friends and family were aghast at the choice we had to make. Seriously, it is not an easy decision to decide to remove half your child's brain in hopes of giving them a normal, seizure free life. The first time I read about it, I wanted to vomit. But yet, when Jenelle's seizures remained uncontrolled, and we were facing the real possibility that any prolonged seizure could kill her, we were willing to do and try anything. Including removing half her brain. The decision was ultimately made for us when Jenelle was found to not be a candidate. Still, I wonder what people would think.
Jenelle and Ashley are very different. Jenelle is mobile, sitting up, and responsive. Ashley is bedridden and has shown little improvement. I dread the day I will no longer be able to lift Jenelle - yet I know that day is fast approaching. Jenelle is already 40 inches long, and 36 pounds. Height runs on both sides of the family, and I am the shortest woman in my family at 5'8" - most women in my family are 5'10" and 3 are over 6 feet tall. The signs are there that Jenelle will be tall someday. Should we give her the "Ashley Treatment?" I don't know, and I hope we don't. I've often felt it would be convenient to keep Jenelle on the pill when the time comes so we could try to avoid her periods. I've been told it is difficult to get these prescribed for mentally retarded children. At first I thought, "She is my child, why can't I?" but then I realized it was and is her body. As far as removing the uterus - I've read many medical reports showing the good things hormones and estrogen can do for the body. I honesty just don't know!
Although we walk in their shoes - our circumstances are different. I now realize it is not for me to judge any parent's decision about their child. We all do what's best and we all hope for the best. I just thought you should know initially I was wrong, and why I reacted the way I did.
Monday, January 08, 2007
Genetics and Visiting Med Student!
Happy New Year!
I thought it had been a while since our last update, and since Jenelle has had some recent appointments I have some things to report in a bit, but first... In the last three years (or more) because of Jenelle and our various support groups (both in real life and from the internet) we've had some wonderful opportunities to meet some extraordinary families and friends. This past weekend, we opened our home for a visit from a young and very smart medical student from out of state. Danielle and I met on the internet at a very respectable internet support group for Caregivers to Children with Neurological Problems. As a medical student, Danielle has always had an interest in children with special needs. She has kept in touch with me about Jenelle via my updates. Danielle is beginning the last year of medical school and finally decided to come meet Jenelle in person while looking at UCLA and CHOC's residency programs.
The first thing Danielle noted about meeting Jenelle in person was that she is much more "active" than she imagined from my updates. Others have mentioned this as well, and I guess I tend to gloss over it a bit. Sometimes Jenelle is very hard to describe. Her increased activity has come on so suddenly, I tend to forget that those of you keeping track of Jenelle via these updates do not get to see her in person like I do everyday. Jenelle moves a lot when she is not sedated or it’s the end of the day before her next dose of medication. She kicks, wiggles, giggles, rolls and is constantly in motion and that motion is usually out of control. Jenelle is quite strong. I usually need to pin her down with my leg while diapering her on the floor, or have Brett or Jack help me by holding her down. Carrying her from her chair to the floor is also hard work as she likes to get stiff on you, or wiggle with excitement, or generally go in her own direction. At times it is tough and my back is hurting from it. But she is very mobile, and also showing an interest in people and objects. She really liked Danielle, and often walked on her knees across the room to Danielle. So, hopefully that gives you a better idea of how she has improved.
Of course, Jenelle had to show off with some seizures. She is back to having prolonged seizures again (like the ones that had me worried back in November) and has a new thing of crying after. Obviously she senses the interruption to her day, or is frustrated as are we. Other than that, Jenelle is doing very well. We saw her GI Doctor today and she is very pleased with Jenelle weight gain. She is taking Jenelle off Zantac for now to see if her reflux resurfaces. So, one less drug for Jenelle! And she wants us to continue feeding Jenelle 5 cans of formula a day as well as introduce foods by mouth as she will tolerate it. All good news! Last Thursday, I took Jenelle up to UCLA (with Danielle) to have her blood test for the atypical Rhet Syndrome gene. Danielle was surprised that Jenelle didn't even flinch at getting her arm poked for the blood draw. Although the doctor ordered this test back in July, we have been waiting on insurance authorization and instructions from UCLA on where to have the blood drawn. The testing will be done at City of Hope and we should have the results in 8 weeks.
Jenelle and her new friend Danielle!
We had a wonderful start to our new year and we are excited for more improvement from Jenelle. That is all for now - I'll keep you posted!
Friday, December 29, 2006
Photos of Jenelle's Christmas!
Here are a few photos I took of Jenelle on Christmas Eve next to the tree. They are a little dark because I didn't use a flash. She was so sweet just sitting there all pretty looking at the tree. Then she decided to try to bite the Christmas Tree lights! YIKES!
Here we have Jack and Jenelle in their Christmas PJs. Jack is hamming it up of course!
Jenelle and one of her Christmas toys - the Musical Garden by Lamaze. She loves to bite the flowers. She is really getting into that "oral" phase of development! And of course, using her mouth is one way to avoid using her hands!
Jenelle at Christmas dinner - love the curls!
Thursday, December 21, 2006
Monday, December 18, 2006
12/18 Update on Jenelle
Well, I just realized that my last update about Jenelle was exactly a month ago today. As always, no news is good news but as an added excuse - I've been very busy working on a jury trial in Los Angeles, so there was literally no time to update... and thankfully nothing urgent to update about!
Jenelle's IEP (Individual Education Plan meeting) went very well on November 30, and all of her services remain in place. Her teachers and therapists have been very excited with all of her recent progress, and Jenelle met many of her goals from her last IEP. Some of her goals were modified to accommodate her progress and we added a couple as well. Her teachers say that Jenelle is fun to watch, and that she has an adorable personality. But of course! ;)
On December 1, Jenelle had an appointment with her ophthalmologist and to have her eyes dilated. I had been hoping for good news on her vision because we honestly feel that Jenelle is seeing better these days, however her ophthalmologist disagrees. He believes that Jenelle has made very little improvement on her "tracking" and that her eye movement and "tracking" is actually to sound rather than visual sight. He said this can happen as cortically blind kids get older because they adapt better to finding their way through sound. Again, her eyes are physically fine, but he believes the vision loss is due to the connections in the brain. He agreed she was more alert so that is something. I suppose we can agree to disagree on the "sight improvement" and hopefully at her next appointment in a year things will be different.
While I was commuting to Los Angeles during trial, poor Brett was playing the role of single Dad. I asked him after his first day it went well getting Jenelle to school, and Brett replied that she was having a "bad hair day" because "Daddy doesn't do pigtails!" On Thursday December 6 as I was leaving at 5:50 a.m. to catch the train, I went to kiss Jenelle goodbye and found that she had vomited in her bed. I woke Brett to let him deal with it and ran to leave for my train. Jenelle had been coughing when I woke an hour earlier, so I just figured it was a fluke. Turns out Jenelle had the stomach flu and vomited 5 more times that day. Daddy took very good care of her and she rewarded him by passing on her tummy flu as Brett was sick a few days later. No fun at our home! The good news is that with all that vomiting (and missed seizure meds), Jenelle's seizures did not increase! She is completely fine now as is her Daddy.
Santa and the Grandparents are ready to deliver some exciting toys for Jenelle in a few days. Thankfully we are all well (knock on wood) and we hope you and your family enjoy the coming holidays. I'll keep you posted!
Jenelle's IEP (Individual Education Plan meeting) went very well on November 30, and all of her services remain in place. Her teachers and therapists have been very excited with all of her recent progress, and Jenelle met many of her goals from her last IEP. Some of her goals were modified to accommodate her progress and we added a couple as well. Her teachers say that Jenelle is fun to watch, and that she has an adorable personality. But of course! ;)
On December 1, Jenelle had an appointment with her ophthalmologist and to have her eyes dilated. I had been hoping for good news on her vision because we honestly feel that Jenelle is seeing better these days, however her ophthalmologist disagrees. He believes that Jenelle has made very little improvement on her "tracking" and that her eye movement and "tracking" is actually to sound rather than visual sight. He said this can happen as cortically blind kids get older because they adapt better to finding their way through sound. Again, her eyes are physically fine, but he believes the vision loss is due to the connections in the brain. He agreed she was more alert so that is something. I suppose we can agree to disagree on the "sight improvement" and hopefully at her next appointment in a year things will be different.
While I was commuting to Los Angeles during trial, poor Brett was playing the role of single Dad. I asked him after his first day it went well getting Jenelle to school, and Brett replied that she was having a "bad hair day" because "Daddy doesn't do pigtails!" On Thursday December 6 as I was leaving at 5:50 a.m. to catch the train, I went to kiss Jenelle goodbye and found that she had vomited in her bed. I woke Brett to let him deal with it and ran to leave for my train. Jenelle had been coughing when I woke an hour earlier, so I just figured it was a fluke. Turns out Jenelle had the stomach flu and vomited 5 more times that day. Daddy took very good care of her and she rewarded him by passing on her tummy flu as Brett was sick a few days later. No fun at our home! The good news is that with all that vomiting (and missed seizure meds), Jenelle's seizures did not increase! She is completely fine now as is her Daddy.
Santa and the Grandparents are ready to deliver some exciting toys for Jenelle in a few days. Thankfully we are all well (knock on wood) and we hope you and your family enjoy the coming holidays. I'll keep you posted!
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