About a month ago I wrote about a writer, Andrea Ball, who was asking for input from preemie parents.
Andrea, a preemie parent herself, writes about a Texas family who have 3 preemies. This is not a piece glorifying prematurity but rather an honest account of life after the birth of a preemie (or 3).
Sending a HUGE thank you to the Nash family for being so open with their struggles. It is your honesty that will help others to know they are not alone.
Gratitude also goes to the families who sent their stories to Andrea. You can read about them on the right side bar in each story.
And, thank you to Andrea for being brave within her profession. If more people in the media could step out side of the box, like Andrea chose to do, the misconceptions of life with a preemie would start to change.
Part one
http://www.statesman.com/news/content/news/stories/local/archive/0908preemies.html
Part two
http://www.statesman.com/news/content/news/stories/local/archive/0909preemies.html
Sunday, September 9, 2007
Friday, September 7, 2007
Free On-line CME Course-Spasticity
The Roles of Nursing, Physical Therapy, and Occupational Therapy in the Management of Spasticity and Movement Disorders Encountered in Persons with Cerebral Palsy
http://www.epliveonline.org/eplive-spasticity0911.html
It will take place on September 11th.
If you've never "attended" one of these, sponsored by Exceptional Parent Magazine, give it a try. It's always well done and very informative.
http://www.epliveonline.org/eplive-spasticity0911.html
It will take place on September 11th.
If you've never "attended" one of these, sponsored by Exceptional Parent Magazine, give it a try. It's always well done and very informative.
Monday, September 3, 2007
Medical Bills and Insurance
(taking a deep breath)
First let me say that I used to be an insurance agent (main focus on auto, home and life). I love the idea of insurance, paying ahead of time so you are covered "just in case". I used to be an insurance junkie. Maximum coverage on auto and home, disability, liability umbrellas and let's not forget life insurance. We had it all. Having taken many claims, for all types of issues, I have seen what good coverage can do for a family during the worst times in their lives.
Then there is health insurance. Ugh!!!
When I was pregnant with Paige, we were paying for our own health insurance. An HMO. They paid for every bit of my prenatal care, every bit of *my* hospital stay when my water broke and every bit of my c-section.
Then comes Paige's NICU bills. Ouch. Her total bill was over $500,000. Insurance would not pay for any meds used "off label". Ummm... that accounts for almost all meds used in the NICU!
After all was said and done, we owed a boat load of money to the hospital. They refused to work with us. I called the insurance company. They refused to work with us. We spent the next year trying to pay off this enormous debt, along with all of the on-going medical bills that preemie families encounter in the beginning. Even though we had insurance, the co-pays and non covered items buried us. Then there are the bills that were piling up from the credit cards. We charged gas, food, etc while we were going back and forth to the NICU (90 miles away) for 78 days. We finally filed bankruptcy.
Every year our health insurance premiums went up. Since Paige was uninsurable, we were forced to pay out almost $1,000 per month in order to keep the policy! This was on top of paying the bills that they did not cover. Oh, the prescription coverage... max. the insurance company paid was $500 per year. Paige has Epilepsy. Two months of Trileptal and one fill of her rescue meds and we were over our limit!
After a few years hubby got a job with a very large company and one of the perks was health insurance! Whew, finally some relief.
Or so I thought.
Between our required out of pocket costs and paying for therapies that were not covered, we were still struggling. Then there are the co-pays. $30 for each specialist. Doesn't sound like much, right? But, when you see 10 specialists in one month, have an out-patient test done and have a few therapies, total medical bills for the month could easily top $1,000. I am thankful for the months when we only have to see a few specialists.
What about all of the on-going needs that insurance companies do not cover? What about doctors that are out of network when you don't have any doctors in your area who are in network?
Don't talk to me about state waivers... most all states have their criteria set so hardly anyone can qualify. Don't talk to me about financial assistance... hubby earns too much money and hardly any group will look beyond the paycheck and take the time to see how much we spend out of our own pocket.
We have it easy. I know of many families who struggle more than we do.
The only tip I can offer is to appeal every decision your insurance company makes. If you are not satisfied with the outcome, file a complaint with your state's Department of Insurance. It's easy to do. Use the search words "[insert your state here] department of insurance". You can even file the complaint on line. We have gotten a few big bills covered this way.
Financial strain... definitely needs to be included when discussing the list of long term issues related to prematurity!
(ok, before I end here, I know someone will email me or leave a comment that they feel that I am bitter about my daughter surviving. Move on people. I love my daughter. But that does not mean I cannot discuss our daily struggles.)
First let me say that I used to be an insurance agent (main focus on auto, home and life). I love the idea of insurance, paying ahead of time so you are covered "just in case". I used to be an insurance junkie. Maximum coverage on auto and home, disability, liability umbrellas and let's not forget life insurance. We had it all. Having taken many claims, for all types of issues, I have seen what good coverage can do for a family during the worst times in their lives.
Then there is health insurance. Ugh!!!
When I was pregnant with Paige, we were paying for our own health insurance. An HMO. They paid for every bit of my prenatal care, every bit of *my* hospital stay when my water broke and every bit of my c-section.
Then comes Paige's NICU bills. Ouch. Her total bill was over $500,000. Insurance would not pay for any meds used "off label". Ummm... that accounts for almost all meds used in the NICU!
After all was said and done, we owed a boat load of money to the hospital. They refused to work with us. I called the insurance company. They refused to work with us. We spent the next year trying to pay off this enormous debt, along with all of the on-going medical bills that preemie families encounter in the beginning. Even though we had insurance, the co-pays and non covered items buried us. Then there are the bills that were piling up from the credit cards. We charged gas, food, etc while we were going back and forth to the NICU (90 miles away) for 78 days. We finally filed bankruptcy.
Every year our health insurance premiums went up. Since Paige was uninsurable, we were forced to pay out almost $1,000 per month in order to keep the policy! This was on top of paying the bills that they did not cover. Oh, the prescription coverage... max. the insurance company paid was $500 per year. Paige has Epilepsy. Two months of Trileptal and one fill of her rescue meds and we were over our limit!
After a few years hubby got a job with a very large company and one of the perks was health insurance! Whew, finally some relief.
Or so I thought.
Between our required out of pocket costs and paying for therapies that were not covered, we were still struggling. Then there are the co-pays. $30 for each specialist. Doesn't sound like much, right? But, when you see 10 specialists in one month, have an out-patient test done and have a few therapies, total medical bills for the month could easily top $1,000. I am thankful for the months when we only have to see a few specialists.
What about all of the on-going needs that insurance companies do not cover? What about doctors that are out of network when you don't have any doctors in your area who are in network?
Don't talk to me about state waivers... most all states have their criteria set so hardly anyone can qualify. Don't talk to me about financial assistance... hubby earns too much money and hardly any group will look beyond the paycheck and take the time to see how much we spend out of our own pocket.
We have it easy. I know of many families who struggle more than we do.
The only tip I can offer is to appeal every decision your insurance company makes. If you are not satisfied with the outcome, file a complaint with your state's Department of Insurance. It's easy to do. Use the search words "[insert your state here] department of insurance". You can even file the complaint on line. We have gotten a few big bills covered this way.
Financial strain... definitely needs to be included when discussing the list of long term issues related to prematurity!
(ok, before I end here, I know someone will email me or leave a comment that they feel that I am bitter about my daughter surviving. Move on people. I love my daughter. But that does not mean I cannot discuss our daily struggles.)
Monday, August 27, 2007
Executive Decisions
It's time for another installment of... Hubby Teasing Time.
(in case you need to catch up, read here and here)
For all you dad's out there, executive decisions are ALWAYS best left to the mom.
My husband made 2 of them lately, without consulting me first.
The first one came the day we were at the mall, pushing her around in the wheelchair. We were strolling along, me pushing our little guy and him pushing Paige when he blurts out, "Hey Paige, do you want to get your ears pierced?"
Did I hear him right? Did he just ask our fashion princess, wanna be teenager, master accessorizer, 8 year old with severe sensory issues, if she wanted her ears pierced? Without asking me first? I must have heard wrong. That's a pretty big executive decision for a dad to make!
Nope, I had heard correctly and as I am picking my jaw off of the floor, Paige answers, "Really? All right!"
Daddy turns to me with this, "Oh shit. I didn't think she would say yes" look on his face.
The second executive decision came a few weeks after that first one. His mother and her husband were over eating dinner with us. Paige had been especially off the wall that day and we both We were just about finished eating when Daddy says, "So Paige, do you want to sleep over at Grandma's tonight?"
Did he actually make yet another executive decision without asking me first?
Once again that "oh shit" look came over him when she said "yes"?
Sleeping over at Grandma's. No big deal right? But what you don't know is that Paige has never slept away from home and has never even been put to bed without both of us there. And, let us not forget her sound sensitivity... IT WAS THE NIGHT OF THE 4TH OF JULY. And, on top of all of that, we were expecting a severe thunderstorm.
All in all it worked out. Paige stayed up, out of fear from all of the noise, until past 2am. She liked staying at Grandma's and Daddy and I did ok too. (ok, so I cried a little).
Let's just hope that Daddy learned his lesson on making those executive decisions! I wonder what will come out of his mouth next.
Are you wondering about her ears? ....
(in case you need to catch up, read here and here)
For all you dad's out there, executive decisions are ALWAYS best left to the mom.
My husband made 2 of them lately, without consulting me first.
The first one came the day we were at the mall, pushing her around in the wheelchair. We were strolling along, me pushing our little guy and him pushing Paige when he blurts out, "Hey Paige, do you want to get your ears pierced?"
Did I hear him right? Did he just ask our fashion princess, wanna be teenager, master accessorizer, 8 year old with severe sensory issues, if she wanted her ears pierced? Without asking me first? I must have heard wrong. That's a pretty big executive decision for a dad to make!
Nope, I had heard correctly and as I am picking my jaw off of the floor, Paige answers, "Really? All right!"
Daddy turns to me with this, "Oh shit. I didn't think she would say yes" look on his face.
The second executive decision came a few weeks after that first one. His mother and her husband were over eating dinner with us. Paige had been especially off the wall that day and we both We were just about finished eating when Daddy says, "So Paige, do you want to sleep over at Grandma's tonight?"
Did he actually make yet another executive decision without asking me first?
Once again that "oh shit" look came over him when she said "yes"?
Sleeping over at Grandma's. No big deal right? But what you don't know is that Paige has never slept away from home and has never even been put to bed without both of us there. And, let us not forget her sound sensitivity... IT WAS THE NIGHT OF THE 4TH OF JULY. And, on top of all of that, we were expecting a severe thunderstorm.
All in all it worked out. Paige stayed up, out of fear from all of the noise, until past 2am. She liked staying at Grandma's and Daddy and I did ok too. (ok, so I cried a little).
Let's just hope that Daddy learned his lesson on making those executive decisions! I wonder what will come out of his mouth next.
Are you wondering about her ears? ....
Thursday, August 23, 2007
Sound Sensitivity and Indoor Water Parks
This is what Paige looks like at indoor water parks... her hands never come off of her ears.
Out of all of the sensory issues that Paige's battles on a daily basis, sound is the worst, by far.
She was 3 when we visited a hotel/indoor water park for the first time. It was a very small one, which only had a few slides. We figured she would have a blast since she loves water so much, but we never took into account the noise level. Needless to say, day one of the first indoor water park visit ended in a major meltdown. We continued our stay and tried the water park in short bursts the next day. Even though she hated the sound, her love of playing in water overrode her sensory issues.
We've been going to hotel/indoor water parks almost every year since that first visit. She really loves it but we still can't stay in there the whole day. This past visit we tried to get her to lower her hands in hopes that she would get used to the noise. No such luck.
I take that back... only once did I get her to lower her hands.... just long enough to snap the picture.
Hands on ears aside... we love seeing her so happy!
At least she no longer melts down at the end of a day at the water park. Here she is with her brother, right after swimming all day.
Sunday, August 19, 2007
How Much Do You Tell?
This was part of my last post but I felt it needed one of its own...
One aspect of having a preemie that I have given a lot of thought to over the years, is not knowing how much history to give to certain people.
Giving a complete history to a new doc/specialist is a no brainer.
But, what about school forms?
The classroom teacher?
The piano teacher?
Parent of her friend?
Neighbors?
Strangers who inquire about her size/behavior/distinct look?
I know my feelings on this subject are colored by the past. But I am still left wondering... "Who needs to know what?" Will she be judged differently if they know she is a former preemie? Will she be judged unfairly (behavior wise) if I don't tell them she is a former preemie. If they know she is a preemie, when she acts differently, will they be more understanding? Will that "understanding" take the form of allowing her to get away with negative behavior? If they know her history, will they not challenge her as much as the next child?
Thoughts anyone?
One aspect of having a preemie that I have given a lot of thought to over the years, is not knowing how much history to give to certain people.
Giving a complete history to a new doc/specialist is a no brainer.
But, what about school forms?
The classroom teacher?
The piano teacher?
Parent of her friend?
Neighbors?
Strangers who inquire about her size/behavior/distinct look?
I know my feelings on this subject are colored by the past. But I am still left wondering... "Who needs to know what?" Will she be judged differently if they know she is a former preemie? Will she be judged unfairly (behavior wise) if I don't tell them she is a former preemie. If they know she is a preemie, when she acts differently, will they be more understanding? Will that "understanding" take the form of allowing her to get away with negative behavior? If they know her history, will they not challenge her as much as the next child?
Thoughts anyone?
Friday, August 17, 2007
Don't Tell Her That!
Hubby and I have never hidden Paige's birth history from her. During doc visits, she was always present when they were taking her history. She was always present during consults following tests and procedures.
Over the years we have caught criticism for our decision to include her in HER care. We have been told to "treat her like a full term child and she will grow to be normal."
Paige started to notice her "differences" when she was very young, around age 3. She would try to do things that the other kids were doing and get upset with herself. It was quite sad. We explained to her that not everyone is good at all things in life. That never went over well. We tried to point out the ways that she excelled. That didn't go over well with her either.
Then one day I took her to the mall to run around with her friends, while us moms gabbed on the sidelines. I saw her trying to run and keep up with them, to no avail. She tried to get her friends to sit down and play in one spot with her. They wanted to run. She tried again to keep up with them but finally started to whimper. By the time she reached me, she was crying. She asked, "Mommy, how come my legs don't work like the other kids?" It broke my heart to see her struggle. It was time. Although her CP is barely noticeable in most situations, SHE knew it was there. A nice Brady Bunch speech was no longer going to work for her. I pulled her aside and told her that the muscles in her legs were affected by the CP and they work a little slower. She was happy with that answer. She was still upset that she couldn't keep up, but she now knew why.
I was comfortable with my parenting and quite happy to see her being content, instead of trying to push herself to do something that wasn't going to work, no matter how much she tried.
Then I hear, "Don't tell her that!" from someone in our group. "She doesn't need to know that she has CP." Umm... she already knows that something doesn't feel right... why not have a name for it? After all, it is HER body.
During a medical appointment, a nurse once told me that I shouldn't have let Paige hear me say that she has epilepsy. What?
We have been told that Paige shouldn't hear her birth history because it is in the past. My response, "when her long term issues relating to prematurity go away, I'll stop giving her birth history to docs."
Over the years we have had others wince when they hear Paige talking about her own issues. Because it's painful for adults to hear, they assume that she should not know the truth. Well, she lives the truth every day.
She is now almost 9 years old. She has never given up trying to do something that her body is resisting. She still runs with her peers, tries to do gymnastics with them, and at times is a bigger daredevil than others her age. But the difference is that now she understands why her body is resisting. She no longer feels inferior but instead understands how her body works.
As far as her birth history... Paige now does a beautiful job advocating for herself when dealing with doctors. She can state her history and her current health conditions in such a clear concise manner that it allows doctors to give her the best care possible and fosters independence. After all, one day she will be on her own and need to take care of herself.
I have had many conversations with older preemies who have full knowledge of their birth history and also their medical/mental health history growing up. Now adults, they are able to better understand their struggles and are wonderful advocates for themselves. I have also had conversations with adult preemies who knew nothing about their birth history (beyond that they were born early). They struggled as adults to find the answers to why they were feeling different than their peers. And, during my "break" I have been reading the various comments between Medrecgal and others. It was these exchanges that gave me the idea for this post. Thank you for your openness and honesty Medrecgal!!
Over the years we have caught criticism for our decision to include her in HER care. We have been told to "treat her like a full term child and she will grow to be normal."
Paige started to notice her "differences" when she was very young, around age 3. She would try to do things that the other kids were doing and get upset with herself. It was quite sad. We explained to her that not everyone is good at all things in life. That never went over well. We tried to point out the ways that she excelled. That didn't go over well with her either.
Then one day I took her to the mall to run around with her friends, while us moms gabbed on the sidelines. I saw her trying to run and keep up with them, to no avail. She tried to get her friends to sit down and play in one spot with her. They wanted to run. She tried again to keep up with them but finally started to whimper. By the time she reached me, she was crying. She asked, "Mommy, how come my legs don't work like the other kids?" It broke my heart to see her struggle. It was time. Although her CP is barely noticeable in most situations, SHE knew it was there. A nice Brady Bunch speech was no longer going to work for her. I pulled her aside and told her that the muscles in her legs were affected by the CP and they work a little slower. She was happy with that answer. She was still upset that she couldn't keep up, but she now knew why.
I was comfortable with my parenting and quite happy to see her being content, instead of trying to push herself to do something that wasn't going to work, no matter how much she tried.
Then I hear, "Don't tell her that!" from someone in our group. "She doesn't need to know that she has CP." Umm... she already knows that something doesn't feel right... why not have a name for it? After all, it is HER body.
During a medical appointment, a nurse once told me that I shouldn't have let Paige hear me say that she has epilepsy. What?
We have been told that Paige shouldn't hear her birth history because it is in the past. My response, "when her long term issues relating to prematurity go away, I'll stop giving her birth history to docs."
Over the years we have had others wince when they hear Paige talking about her own issues. Because it's painful for adults to hear, they assume that she should not know the truth. Well, she lives the truth every day.
She is now almost 9 years old. She has never given up trying to do something that her body is resisting. She still runs with her peers, tries to do gymnastics with them, and at times is a bigger daredevil than others her age. But the difference is that now she understands why her body is resisting. She no longer feels inferior but instead understands how her body works.
As far as her birth history... Paige now does a beautiful job advocating for herself when dealing with doctors. She can state her history and her current health conditions in such a clear concise manner that it allows doctors to give her the best care possible and fosters independence. After all, one day she will be on her own and need to take care of herself.
I have had many conversations with older preemies who have full knowledge of their birth history and also their medical/mental health history growing up. Now adults, they are able to better understand their struggles and are wonderful advocates for themselves. I have also had conversations with adult preemies who knew nothing about their birth history (beyond that they were born early). They struggled as adults to find the answers to why they were feeling different than their peers. And, during my "break" I have been reading the various comments between Medrecgal and others. It was these exchanges that gave me the idea for this post. Thank you for your openness and honesty Medrecgal!!
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