One post per week per my New Year's Resolution. I consider weeks to start Sunday, end Saturday. Well, I almost made it, but I think the "two posts in one week" should grant me some leeway. So, I missed it by two days, we all have faults! ;)
Jenelle had her first seizure of the year on January 14, and another seizure last Tuesday, the 24th. That seizure happened at the end of the school day in her class room. A grand mal lasting 2 minutes, 40 seconds. No need for Diastat, and she slept most of the evening. Hoping this doesn't start a trend.
Jenelle has a new one on one aide at her YMCA after-school program. Last Friday, her former one on one aide came to visit and she was just ecstatic to see her. I love it when Jenelle shows familiarity with people. On Saturday, she and I attended her "year end" party for the Tustin Cobra Challenger Cheer girls. She was just thrilled to see the girls again, and it was fun to watch them do their hair, do their nails and dance to fun music. The cheer leading was such a fantastic experience, and we can't wait to do it again next year!
I'm doing well so far on my new diet to help me lower the triglycerides and lose some weight. The first week was pretty tough; I had headaches I think from sugar withdrawals. However, in that first week, I also lost 3.2 pounds! The second week was much better. The headaches were gone, and I felt like I was fuller at meals, and had more energy. Isn't is amazing that what we eat can affect us so much. The second week I gained back a few ounces, and added some more exercises. Starting into my third week now and I am maintaining a total loss of 2.3 pounds. Pretty good so far, even though I cheated a bit this weekend and ate some candy from the pinata at a birthday party this weekend. :(
That is all for now - we are getting pretty busy with baseball tournaments the next three weeks, and gearing up for Little League. It's beginning to look a lot like Spring! Thanks for continued thoughts and prayers. I'll keep you posted.
Monday, January 30, 2012
Wednesday, January 18, 2012
Who decides the meaning of "Quality of Life?"
A few days ago, I noticed on Facebook that friends were sharing a blog post about a child with mental and physical disabilities who was being denied a life-saving kidney transplant. Many were "out-raged" because on the surface it reads that a child was denied a transplant solely because she is "mentally retarded". I was busy at the time I saw the post, and didn't bother to read about it beause I thought to myself, "there is always more to the story."
At lunch today I noticed the same story had gained national attention, and was being reported on by ABC News. I read the article and remained unimpressed - there has to be more to the story. So I went to the Mother's blog, and read with teary eyes their story. And when I got to the end of it, I felt there had to be more. I looked briefly for some history on the child, perhaps a personal blog or website where the Mother was disclosing health information, but found nothing. All we are left with is her story of a horrific experience, and medical information and statistics on the child's diagnosis. In her story, the mother eludes to "Hepatits C", and "HIV"; but there is no discussion as to why those words are relavant to the hospital's decision in this matter.
Now, I would be the very first person to stand up and scream and shout that NO ONE - EVER, EVER, EVER, no one should EVER be discriminated against or denied medical treatment because they are "mentally retarded!" Just two days ago, I posted my hope that one day Jenelle be judged on the content of her character, and not by her disability. And I do personally believe that the Special Needs community (which is very vast and inclusive of many different types of disabilities) is probably still one of the most discriminated against communities in the world. Yet, even though I agree strongly with all of that - I find myself feeling sorry for this particular family.
Their daughter is only 3 years old, so this "special needs" way of life is still new to them. They can't possibly know, or understand what the doctors are warning against because they are too emotionally involved. The Mother even quotes the Social Worker and the Doctor's warnings of the dangerous side effects to a normal child, let alone a child with her disabilities. And the many medications she will need along with the long term care and attention. They are trying to make the family understand "quality of life," and all the Mother hears and knows is that her child is "developmentally delayed" and thus entitled to her right to live.
I'm not saying this Mother is wrong, but as with anything, experience tends to make me somewhat jaded. Each Special Needs Child is different, and wonderful, and complicated in so many ways. Each brings joy to the lives of their Mother and Father - there is no questioning that. But just because we have the science and ability to prolong the enivetable for our Special Needs Children, does it mean we should?
It goes back to the definition of "quality of life", and who decides the meaning of it. Yes, I realize I've just opened a big ole can of worms. That I'm the minority. In fact, I realzie I'm being very matter of fact about as decision that is as unique as each indiviual on the planet. However, the issue of "quality of life" has become very personal to me in recent years. I think of Jenelle's quality of life, Brett's quality of life, Jack's quality of life, MY quality of life, my Parents' quality of life, my Niece's quality of life, and it goes on...and yet there are so many different interpretations of the meaning.
So who decides? Who determines "quality of life?" I honestly don't know the answer. It changes with each possibility, and each circumstance, and for each individual person. I do hope that when I have to make that choice for myself or my family that the choice is easy for me. But we can't all be that lucky.
Back to the "discrimination" issue; is this child being discriminated against? I don't think so, because there is always more to the story. Is it sad? Yes. Do I feel horribly for the family? Absolutely. Are the doctors right on this one? Possibly. Again, there is always more to the story.
At lunch today I noticed the same story had gained national attention, and was being reported on by ABC News. I read the article and remained unimpressed - there has to be more to the story. So I went to the Mother's blog, and read with teary eyes their story. And when I got to the end of it, I felt there had to be more. I looked briefly for some history on the child, perhaps a personal blog or website where the Mother was disclosing health information, but found nothing. All we are left with is her story of a horrific experience, and medical information and statistics on the child's diagnosis. In her story, the mother eludes to "Hepatits C", and "HIV"; but there is no discussion as to why those words are relavant to the hospital's decision in this matter.
Now, I would be the very first person to stand up and scream and shout that NO ONE - EVER, EVER, EVER, no one should EVER be discriminated against or denied medical treatment because they are "mentally retarded!" Just two days ago, I posted my hope that one day Jenelle be judged on the content of her character, and not by her disability. And I do personally believe that the Special Needs community (which is very vast and inclusive of many different types of disabilities) is probably still one of the most discriminated against communities in the world. Yet, even though I agree strongly with all of that - I find myself feeling sorry for this particular family.
Their daughter is only 3 years old, so this "special needs" way of life is still new to them. They can't possibly know, or understand what the doctors are warning against because they are too emotionally involved. The Mother even quotes the Social Worker and the Doctor's warnings of the dangerous side effects to a normal child, let alone a child with her disabilities. And the many medications she will need along with the long term care and attention. They are trying to make the family understand "quality of life," and all the Mother hears and knows is that her child is "developmentally delayed" and thus entitled to her right to live.
I'm not saying this Mother is wrong, but as with anything, experience tends to make me somewhat jaded. Each Special Needs Child is different, and wonderful, and complicated in so many ways. Each brings joy to the lives of their Mother and Father - there is no questioning that. But just because we have the science and ability to prolong the enivetable for our Special Needs Children, does it mean we should?
It goes back to the definition of "quality of life", and who decides the meaning of it. Yes, I realize I've just opened a big ole can of worms. That I'm the minority. In fact, I realzie I'm being very matter of fact about as decision that is as unique as each indiviual on the planet. However, the issue of "quality of life" has become very personal to me in recent years. I think of Jenelle's quality of life, Brett's quality of life, Jack's quality of life, MY quality of life, my Parents' quality of life, my Niece's quality of life, and it goes on...and yet there are so many different interpretations of the meaning.
So who decides? Who determines "quality of life?" I honestly don't know the answer. It changes with each possibility, and each circumstance, and for each individual person. I do hope that when I have to make that choice for myself or my family that the choice is easy for me. But we can't all be that lucky.
Back to the "discrimination" issue; is this child being discriminated against? I don't think so, because there is always more to the story. Is it sad? Yes. Do I feel horribly for the family? Absolutely. Are the doctors right on this one? Possibly. Again, there is always more to the story.
Monday, January 16, 2012
Jinx...
Jenelle had her first seizure of the year on Saturday night lasting a little under a minute. Oh well, not a bad run for the first 14 days of the year!
Friday, January 13, 2012
All about Mommy!
Second week into the new year, and a second update! I'm on a roll!
First, a report on our little girl:
I type this very, very hesitantly... and am knocking on all wood products I can find ... but I'm pleased to say that Jenelle has not had a seizure since Christmas morning LAST YEAR! Hopefully this is the year we can officially say Jenelle's new year's resolution is to quit having seizures. We can only hope!
Now, it's all about Mommy! I have a few things to report and had a follow up yesterday at UCLA. The good news, as always, I'm still cancer free! Now, the not so fun news... at least not so fun for me.
At the end of December, I saw my general doctor. Because I've been off chemo since August, it was a good time to re-do some routine labs to check my thyroid function, cholesterol levels, etc. We had done this back in June, but because of the chemo drugs, the numbers were quite skewed. So, during the week after Christmas, I had some fasting blood work done and the results were not so fun; apparently my triglycerides are very, very high. My general doctor told me to lay off the carbs and exercise and we'd re-test in 3 months. I took the labs to UCLA yesterday, and they suggested I start medication right away.
If you've known me since at least high school, you will also know that I've never, ever had to diet in my life. I've always had a very high metabolism, and I've always been very thin. Oh yeah, and the exercise part... well I don't get much exercise aside from taking the stairs in the parking garage at work.
My Father has Type Two Diabetes, so I've been worried for a while that I might follow that path. It doesn't help that I love carbs and sugary sweets. However, since my cancer, I have steadily gained weight. Some survivors tell me this is the little know secret they don't tell you about chemo and cancer - that ultimately you gain weight. However, everything I've done hasn't been helping, but I'm tired of see the number on the scale that I saw when I was pregnant with Jack! The signs are all there.
Getting old totally sucks! So does going through cancer.
However, in the last 10 years, I've gained a lot of perspective about taking medications. If your child has seizures - take medication. If your child has ADHD - take medication when necessary (i.e. during school.) If you have cancer - definitely take the medication. If you think you are getting sick - hold off on medication until it's an infection - then take the medication. With all my body has been through and all that I've survived, why just agree to simply "take a pill" when I could try to make a decent effort to change my habits? I really sort of owe it to myself, and my body since I do have this second chance at life thing going for me.
I did a lot of reading and Internet research, and learned that my diet will drastically change. Leaner meats, more fish, no sugars, limited alcohol, lots of greens, whole grains and no carbs. Thank God we have a Trader Joe's just around the corner! I started this new diet on Wednesday, and I still get temped to cheat - especially the sugar (like Sweet Tarts and such.) But I think at the very least before surrendering to medication, I owe this to myself. It's worth a try, so wish me luck!
Thank you all for the continued thoughts, support and prayers. We'll keep you posted!
(Knock Knock Knock on wood!) ;)
First, a report on our little girl:
I type this very, very hesitantly... and am knocking on all wood products I can find ... but I'm pleased to say that Jenelle has not had a seizure since Christmas morning LAST YEAR! Hopefully this is the year we can officially say Jenelle's new year's resolution is to quit having seizures. We can only hope!
Now, it's all about Mommy! I have a few things to report and had a follow up yesterday at UCLA. The good news, as always, I'm still cancer free! Now, the not so fun news... at least not so fun for me.
At the end of December, I saw my general doctor. Because I've been off chemo since August, it was a good time to re-do some routine labs to check my thyroid function, cholesterol levels, etc. We had done this back in June, but because of the chemo drugs, the numbers were quite skewed. So, during the week after Christmas, I had some fasting blood work done and the results were not so fun; apparently my triglycerides are very, very high. My general doctor told me to lay off the carbs and exercise and we'd re-test in 3 months. I took the labs to UCLA yesterday, and they suggested I start medication right away.
If you've known me since at least high school, you will also know that I've never, ever had to diet in my life. I've always had a very high metabolism, and I've always been very thin. Oh yeah, and the exercise part... well I don't get much exercise aside from taking the stairs in the parking garage at work.
My Father has Type Two Diabetes, so I've been worried for a while that I might follow that path. It doesn't help that I love carbs and sugary sweets. However, since my cancer, I have steadily gained weight. Some survivors tell me this is the little know secret they don't tell you about chemo and cancer - that ultimately you gain weight. However, everything I've done hasn't been helping, but I'm tired of see the number on the scale that I saw when I was pregnant with Jack! The signs are all there.
Getting old totally sucks! So does going through cancer.
However, in the last 10 years, I've gained a lot of perspective about taking medications. If your child has seizures - take medication. If your child has ADHD - take medication when necessary (i.e. during school.) If you have cancer - definitely take the medication. If you think you are getting sick - hold off on medication until it's an infection - then take the medication. With all my body has been through and all that I've survived, why just agree to simply "take a pill" when I could try to make a decent effort to change my habits? I really sort of owe it to myself, and my body since I do have this second chance at life thing going for me.
I did a lot of reading and Internet research, and learned that my diet will drastically change. Leaner meats, more fish, no sugars, limited alcohol, lots of greens, whole grains and no carbs. Thank God we have a Trader Joe's just around the corner! I started this new diet on Wednesday, and I still get temped to cheat - especially the sugar (like Sweet Tarts and such.) But I think at the very least before surrendering to medication, I owe this to myself. It's worth a try, so wish me luck!
Thank you all for the continued thoughts, support and prayers. We'll keep you posted!
(Knock Knock Knock on wood!) ;)
Friday, January 06, 2012
A New Year Means New Resolutions and New Habits
Happy New Year!
Being the "A type" personality, obsessive compulsive, superstitious type person that I am, making and trying to keep New Year's Resolutions really appeal to me. Of course, I never really end up keeping them, but sometimes making yourself a promise to change something in your life is never really a bad thing. One of my New Year's Resolutions for 2012 is to update this blog more frequently, even if there is nothing to say. My goal is at least one update a week.
Here are some of my other "resolutions" for 2012:
- Attempt something new each month
- Be more punctual (so far, so good, but this one will fade fast I'm sure)
- Better Proof-reading of drafts (per my boss's request - this one will take for sure! ;)
- Strive for healthier habits and more exercise
Not much, but just some things to strive for to better myself. As for the proof reading, that has always been difficult for me. I'd like to blame it on some sort of disability that makes it impossible for my eye to see errors, but alas the real problem is that I'm convinced that I'm perfect the first time. And sometimes I'm just so busy, I just want to get one thing off my desk so I can start another. And sometimes I just lazy.
Jack announced this morning that he has decided on a Resolution for 2012. He is going to brush his teeth every day! This has been problematic for him since the broken tooth the Saturday after Thanksgiving. Yesterday, the oral surgeon removed JD's brace holding in his broken tooth. The front tooth is dead, and will require root canal, but the other is fine, so no extraction or bridge. Great news. I told Jack that another "Resolution" he could make would be to not throw the Playstation and Wii remotes. Here's hoping he keeps both Resolutions. As for Brett simply wants to be able to say on December 31, 2012 that "This year could not have been better!" And of course, Jenelle wants "no seizures". So far, so good (knock wood!)
~~~~~
Brett jokes all the time that he should have put a trade mark on the term KCA. Cancer really sucks, and it hits so close to home for me whenever I hear about it. While we all have a good laugh in "Kicking Cancer's Ass", at times it has not been something I want to tell a young child. Sometimes I say KCB, for "Kick Cancer's Butt!", but for me, KCA is the only mantra.
In September, I learned about a 12 year old girl in my area fighting brain cancer. Reading her updates on Facebook always made me smile because I could see that she had the right attitude to beat it. Her motto - NEGU, or "Never Ever Give Up!" Jessie Rees died yesterday after her long fight to "never ever give up" fighting brain cancer. She was a joy and inspiration to so many, and before the day ended she finally met her goal of getting 50,000 Facebook fans. God Bless you Jessie, and thank you for inspiring other children fighting cancer.
~~~~~
Finally, some photos from Christmas Eve that I promised:
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