Talli has been having to wear a mask when she goes out in public because of the risks of catching H1N1. We are almost out of the box of Kimberly-Clark Pediatric Masks and are having trouble locating more. I called a number of local pharmacies and they don't carry them at all. The vendors on Amazon.com have significantly increased their prices.
Another mom told me about It's My Heart, a non-profit for congenital heart defects. They have directions on their website to make a face mask. From reading that I have done, it is recommended that the weave of the fabric to be tight & layered and the masks are washed between uses and when they are soiled.
There is a link in my link list sewing directions.
Wednesday, December 30, 2009
Friday, December 4, 2009
Fabulous music for us special needs parents
A friend linked to this music video on her facebook page, it just has a beautiful message expressing our needs. It is from Harmonizing with Humanity, song "The Life That's Chosen Me" by Karen Taylor-Good.
Saturday, November 21, 2009
And there are always angels
There is another little angel in heaven.
For the past week, I have been talking and texting with another mom whose daughter has Propionic Acidemia (PA). There was also a lot of talk with a mutual friend as one of us might have a new piece of news on the little girl. At times, she would be doing better, then take a turn for the worse. Yesterday things did look better, but this morning they decided that no more could be done for her and took her off life support.
There is always sadness, survivor guilt for those of us who still have their children, and some happiness and peace for the child who does not have to deal with tubes or pokes any longer. Most of us know these things are coming as the life expectancy of PA is still only 3 years. This angel was 3.
Talli looks at me curiously when I tell her I am sad that someone died. It could be my grandmother or another child with PA. She tells me how they are with Jesus and are so happy.
May our newest Angel's mother have peace and the rest of us love our angels while we have them.
For the past week, I have been talking and texting with another mom whose daughter has Propionic Acidemia (PA). There was also a lot of talk with a mutual friend as one of us might have a new piece of news on the little girl. At times, she would be doing better, then take a turn for the worse. Yesterday things did look better, but this morning they decided that no more could be done for her and took her off life support.
There is always sadness, survivor guilt for those of us who still have their children, and some happiness and peace for the child who does not have to deal with tubes or pokes any longer. Most of us know these things are coming as the life expectancy of PA is still only 3 years. This angel was 3.
Talli looks at me curiously when I tell her I am sad that someone died. It could be my grandmother or another child with PA. She tells me how they are with Jesus and are so happy.
May our newest Angel's mother have peace and the rest of us love our angels while we have them.
Sunday, November 15, 2009
There are always adjustments....
I got a call from my dad this morning. No one made it to the phone before it stopped ringing as we don't usually get any calls on a Sunday morning. So I called him right back. My maternal grandma died this morning.
She was 84 years old. For the past 7 years she lived in OR with my parents or at a "memory care" facility. She had Alzheimer's for at least 10 years. She was also a survivor of breast and uterine cancer and MS. She could sew anything and her ability to sew was one of the last things that she lost. She had an incredible sense of humor. She loved her family deeply and would tease us that our weddings, graduations and births messed up her travel plans. She has 3 daughters, 19 grandkids, and a multitude of great-grandkids.
Prior to my grandfather passing in 2002, they traveled extensively. Pretty much wherever they could get free military flights or their camper could take them they would go.
Her father was an immigrant from Denmark and her mother from Germany. She met my grandfather at a dance in Salt Lake City and they were married soon afterwards. They honeymooned separately: he went hunting with his brothers and she got aquainted with her new in-laws. She never let him live that down.
When my paternal grandmother died in 1998 and my maternal grandfather in 2002 there wasn't a question that I would goto the funeral and see my family. Talli was just an infant in 2002 when we flew out to California. She was actually eating everything by mouth then, although I recollect her vomiting during the trip.
But now, she is pretty much housebound because of H1N1. We rarely travel without her getting sick or landing in the hospital and I can't imagine trying to make it across the country and her not getting sick. We have somewhat full coverage for home nursing during the day, however, I don't trust them fully (a nurse ate a peanut product in the house last week, among other things), so I can't leave her.
I know the funeral will be in Marin County, CA which is where my mom grew up, but I don't have a time yet. I am not hopeful that I could hop a direct flight out and back to make it, that is only an option if it is on a weekend.
My mom understands, but it would be nice to go.
She was 84 years old. For the past 7 years she lived in OR with my parents or at a "memory care" facility. She had Alzheimer's for at least 10 years. She was also a survivor of breast and uterine cancer and MS. She could sew anything and her ability to sew was one of the last things that she lost. She had an incredible sense of humor. She loved her family deeply and would tease us that our weddings, graduations and births messed up her travel plans. She has 3 daughters, 19 grandkids, and a multitude of great-grandkids.
Prior to my grandfather passing in 2002, they traveled extensively. Pretty much wherever they could get free military flights or their camper could take them they would go.
Her father was an immigrant from Denmark and her mother from Germany. She met my grandfather at a dance in Salt Lake City and they were married soon afterwards. They honeymooned separately: he went hunting with his brothers and she got aquainted with her new in-laws. She never let him live that down.
When my paternal grandmother died in 1998 and my maternal grandfather in 2002 there wasn't a question that I would goto the funeral and see my family. Talli was just an infant in 2002 when we flew out to California. She was actually eating everything by mouth then, although I recollect her vomiting during the trip.
But now, she is pretty much housebound because of H1N1. We rarely travel without her getting sick or landing in the hospital and I can't imagine trying to make it across the country and her not getting sick. We have somewhat full coverage for home nursing during the day, however, I don't trust them fully (a nurse ate a peanut product in the house last week, among other things), so I can't leave her.
I know the funeral will be in Marin County, CA which is where my mom grew up, but I don't have a time yet. I am not hopeful that I could hop a direct flight out and back to make it, that is only an option if it is on a weekend.
My mom understands, but it would be nice to go.
Wednesday, October 21, 2009
Getting things paid for....
I am by no means an expert, however, I have learned a few things over the last 8 years.
1. Read your insurance policy or at very least your insurance certificate to see what is covered.
2. Ask for itemized bills, especially for hospitalizations.
3. Read through the bills that come. I was just sent a bill for a $30 for an appointment with a specialist. I had paid the co-pay when we were in the office. With this office, if I had paid it again I would never see the money again.
4. Know your state laws regarding coverage.
IL recently passed a bill requiring amino acid based formulas to be covered by insurance. Our insurance was denying Talli's formula. I sent in an appeal with a copy of the law and Press Release by a sponsoring organization. Usually, once a year I have to send in the same information, but it is now covered.
5. Find out why something is not being covered.
I went round and round about getting some medication covered right after Talli turned 2 years old. I was told that since she is 2 she no longer could take the name brand liquid form of the medication, she had to take a pill. This was after hours of being on the phone with various people. I informed them that she had a feeding tube and they were paying for those supplies every month. I got a big, "Ohhhhh" and "we are a different department, so don't know about tubes". Every once in a while I get a denial and then make sure the pharmacists puts in the notes that she has a tube.
6. DON'T pay that bill if you have Medicaid.
In most locals it is not legal for a medical provider to collect from a Medicaid recipient.
7. Talk to your provider if you are having trouble paying
We have negociated not paying co-pays and several thousand off a surgeon's bill by asking. Many hospitals and medical providers will work with you if you are having trouble paying. Not all doctors are like Dr. Pedro Jose Greer or Dr. Holmes Morton, but there are some out there.
8. Talk to the provider if they are having trouble getting paid
Keep the communication open with the provider, so they are getting paid in a timely manner. Bring your insurance card with you, call the insurance company to get denied claims paid. Your provider will be happy to get paid and in a timely manner.
I noted to our pediatrician when we changed insurance companies that his negociated in-network rate was a lot higher. He commented on how much he liked the plan that we had, that it paid the second highest amount, but the company paid him 30-45 days sooner than the other plan that paid him more.
Did he open up on New Year's Eve or stay open later a different day to see my sick child because he loves us oh so much or because he knows we respect him and his time? I don't know, but I like to make sure he is well paid and in a timely manner.
9. Talk to other parents
Yes, most of us meet with other special needs families and complain and compare notes. But do you ask: "How much was that x?" "What insurance do you have?" "How do you pay for all of the copays on meds and visits?"
Ask, talk, and help one another.
My husband was moved over to a contractor at his job 3 years ago and we went on COBRA. It was over 16% of his gross monthly income. I asked my good friend whose husband was unemployed. "Well, didn't you know there is this program that will pay for your family's premium if your costs are so high for a family member on Medicaid?" Ah, well no!! Our 2 case managers for other programs who had the application never told us about it. We applied and.... they paid our premiums back to the application date. I send in proof of payment and EOBs and we get reimbursed with a check sent via certified mail.
10. Search out organization there to help
Does your disease organization help with bills?
Ask your disease organization if they know of local or national resources specific to your disorder.
Is there a local support group meeting?
Find out if your child qualifies for mandated programs like Early Intervention.
Support and utilize groups like http://www.themorganproject.org/
Take advantage of conferences supported by disease organizations, EI and other groups. Here in IL, StarNet and the ARC will help to pay for travel expenses for conferences and often hold free meetings as well.
11. Contact the manufacturer
Whether it is a DME manufacturer or a drug company, many have programs to help those in need. For those with Propionic Acidemia, most are on specialized formula for life. Most of the manufacturers have programs to help those who can not afford treatment. The same goes for drug companies, whether it is an orphan drug like Carnitor, or a major drug company processing IVIG, they will help those needing treatment. When our feeding pump breaks (I have 9 pumps in Talli's room, one of which is working), I contact the DME provider, but also my local sales rep. Oh, Patrick, such a wonderful man, who will overnight me a pump that works; he sends a nice Christmas card as well.
12. Talk to the discharge planner & social worker at the hospital
Everytime you are at the hospital talk to them. Let them know your needs. Unfortunately, once you are discharged you are often forgotten, but they may have resources that you do not know of.
13. Just shop around
Yes, I have gotten supplies on both ebay & amazon. My first feeding pump purchase on ebay was fully reimbursed by our health insurance company. $161 vs $2500, someone actually did the math and realized the deal. This insurer highly suggested people shop around and negociate. Dh also happened to work for the company and I was on the phone with the claims rep almost daily, but I don't think that swayed the decision as they also denied plenty of claims. Even if they didn't reimburse me, 20% coinsurance on $2500 = $500, so super good deal for me either way. My last pump purchase was $37.50, including shipping.
Don't do things that are illegal. I have paid for compounded Rxs that would have been a lot cheaper if I got them from Canada.
14. Use the supplies at the hospital
Don't use your own stock, use what the hospital has. If they do not have a needed supply talk with them about getting it. I have had charge nurses send people out to get Pampers because Talli couldn't use Huggies.
15. Know your costs
Know what your co-pays are, your co-insurance, Max out-of-pocket, etc.
My insurer has a nice tool regarding Rxs on their website. I can find out the drug costs on all of our family's medications if I pick them up at Pharmacy X or get them mail order. It also states the limit on the number of doses for the Rx. So, I learned that it is cheaper for us to get 3+ medications a month from Dominicks' ($4/month) or Target's ($4/month or $10/3 months)discount drug programs than have them billed through my insurance.
16. Know your pharmacist
I love our pharmacy! I can bike to it when the weather is good. The pharmacy tech knows who I am and gathers all of the family's medications when he sees me coming. A few weeks ago he didn't grab one for one the boys, but he rarely gets an Rx. If insurance is denying something, they will usually give me the Rx or at least a week's worth to hold us over until things are straightened out. If something is not in stock they will ask me if 1. I can wait a day or two to get it in 2. if I want it transfered to a different pharmacy AND they will call to see if it is stock there 3. they will call the pharmacy down the street and if it is in, the pharmacy tech will go get a supply to then fill my Rx.
Really, I just love them!
This saves us how?? If we are not skipping meds because they are being denied for some reason or they are not in stock won't our overall health costs go down.
A friend's pharmacist calls her every month to come pick up her supply. I haven't been able to get it so that all of the medications are refillable on the same day.
1. Read your insurance policy or at very least your insurance certificate to see what is covered.
2. Ask for itemized bills, especially for hospitalizations.
3. Read through the bills that come. I was just sent a bill for a $30 for an appointment with a specialist. I had paid the co-pay when we were in the office. With this office, if I had paid it again I would never see the money again.
4. Know your state laws regarding coverage.
IL recently passed a bill requiring amino acid based formulas to be covered by insurance. Our insurance was denying Talli's formula. I sent in an appeal with a copy of the law and Press Release by a sponsoring organization. Usually, once a year I have to send in the same information, but it is now covered.
5. Find out why something is not being covered.
I went round and round about getting some medication covered right after Talli turned 2 years old. I was told that since she is 2 she no longer could take the name brand liquid form of the medication, she had to take a pill. This was after hours of being on the phone with various people. I informed them that she had a feeding tube and they were paying for those supplies every month. I got a big, "Ohhhhh" and "we are a different department, so don't know about tubes". Every once in a while I get a denial and then make sure the pharmacists puts in the notes that she has a tube.
6. DON'T pay that bill if you have Medicaid.
In most locals it is not legal for a medical provider to collect from a Medicaid recipient.
7. Talk to your provider if you are having trouble paying
We have negociated not paying co-pays and several thousand off a surgeon's bill by asking. Many hospitals and medical providers will work with you if you are having trouble paying. Not all doctors are like Dr. Pedro Jose Greer or Dr. Holmes Morton, but there are some out there.
8. Talk to the provider if they are having trouble getting paid
Keep the communication open with the provider, so they are getting paid in a timely manner. Bring your insurance card with you, call the insurance company to get denied claims paid. Your provider will be happy to get paid and in a timely manner.
I noted to our pediatrician when we changed insurance companies that his negociated in-network rate was a lot higher. He commented on how much he liked the plan that we had, that it paid the second highest amount, but the company paid him 30-45 days sooner than the other plan that paid him more.
Did he open up on New Year's Eve or stay open later a different day to see my sick child because he loves us oh so much or because he knows we respect him and his time? I don't know, but I like to make sure he is well paid and in a timely manner.
9. Talk to other parents
Yes, most of us meet with other special needs families and complain and compare notes. But do you ask: "How much was that x?" "What insurance do you have?" "How do you pay for all of the copays on meds and visits?"
Ask, talk, and help one another.
My husband was moved over to a contractor at his job 3 years ago and we went on COBRA. It was over 16% of his gross monthly income. I asked my good friend whose husband was unemployed. "Well, didn't you know there is this program that will pay for your family's premium if your costs are so high for a family member on Medicaid?" Ah, well no!! Our 2 case managers for other programs who had the application never told us about it. We applied and.... they paid our premiums back to the application date. I send in proof of payment and EOBs and we get reimbursed with a check sent via certified mail.
10. Search out organization there to help
Does your disease organization help with bills?
Ask your disease organization if they know of local or national resources specific to your disorder.
Is there a local support group meeting?
Find out if your child qualifies for mandated programs like Early Intervention.
Support and utilize groups like http://www.themorganproject.org/
Take advantage of conferences supported by disease organizations, EI and other groups. Here in IL, StarNet and the ARC will help to pay for travel expenses for conferences and often hold free meetings as well.
11. Contact the manufacturer
Whether it is a DME manufacturer or a drug company, many have programs to help those in need. For those with Propionic Acidemia, most are on specialized formula for life. Most of the manufacturers have programs to help those who can not afford treatment. The same goes for drug companies, whether it is an orphan drug like Carnitor, or a major drug company processing IVIG, they will help those needing treatment. When our feeding pump breaks (I have 9 pumps in Talli's room, one of which is working), I contact the DME provider, but also my local sales rep. Oh, Patrick, such a wonderful man, who will overnight me a pump that works; he sends a nice Christmas card as well.
12. Talk to the discharge planner & social worker at the hospital
Everytime you are at the hospital talk to them. Let them know your needs. Unfortunately, once you are discharged you are often forgotten, but they may have resources that you do not know of.
13. Just shop around
Yes, I have gotten supplies on both ebay & amazon. My first feeding pump purchase on ebay was fully reimbursed by our health insurance company. $161 vs $2500, someone actually did the math and realized the deal. This insurer highly suggested people shop around and negociate. Dh also happened to work for the company and I was on the phone with the claims rep almost daily, but I don't think that swayed the decision as they also denied plenty of claims. Even if they didn't reimburse me, 20% coinsurance on $2500 = $500, so super good deal for me either way. My last pump purchase was $37.50, including shipping.
Don't do things that are illegal. I have paid for compounded Rxs that would have been a lot cheaper if I got them from Canada.
14. Use the supplies at the hospital
Don't use your own stock, use what the hospital has. If they do not have a needed supply talk with them about getting it. I have had charge nurses send people out to get Pampers because Talli couldn't use Huggies.
15. Know your costs
Know what your co-pays are, your co-insurance, Max out-of-pocket, etc.
My insurer has a nice tool regarding Rxs on their website. I can find out the drug costs on all of our family's medications if I pick them up at Pharmacy X or get them mail order. It also states the limit on the number of doses for the Rx. So, I learned that it is cheaper for us to get 3+ medications a month from Dominicks' ($4/month) or Target's ($4/month or $10/3 months)discount drug programs than have them billed through my insurance.
16. Know your pharmacist
I love our pharmacy! I can bike to it when the weather is good. The pharmacy tech knows who I am and gathers all of the family's medications when he sees me coming. A few weeks ago he didn't grab one for one the boys, but he rarely gets an Rx. If insurance is denying something, they will usually give me the Rx or at least a week's worth to hold us over until things are straightened out. If something is not in stock they will ask me if 1. I can wait a day or two to get it in 2. if I want it transfered to a different pharmacy AND they will call to see if it is stock there 3. they will call the pharmacy down the street and if it is in, the pharmacy tech will go get a supply to then fill my Rx.
Really, I just love them!
This saves us how?? If we are not skipping meds because they are being denied for some reason or they are not in stock won't our overall health costs go down.
A friend's pharmacist calls her every month to come pick up her supply. I haven't been able to get it so that all of the medications are refillable on the same day.
Monday, October 19, 2009
A Night Out
Dh and I occasionally get out together. Our hope is always to have a weekly date night, but often times we just watch a movie at home or walk through Lowe's together.
On Friday night, we were able to goto 2100 blue in Oakbrook, IL for dinner. We had a Marriott dinner certificate that was going to expire (thanks to his former employer's wellness program). If you have never used one of these they are fantastic! Ours included appetizers, salad, entree, dessert, tip, and taxes for 2. You really need to take advantage of one of the nicer Marriott's to get the full benefits of this. We ate and ate and enjoyed delicious food. The restaurant was quiet and we didn't feel rushed. We were able to actually talk to one and another whilst enjoying the view.
We have no family anywhere near us, so we depend on a very good babysitter. In the past, we have been able to have a nurse on the weekends. For a while a friend, who is a nurse, would watch our kids once a month so we could go out.
On Friday night, we were able to goto 2100 blue in Oakbrook, IL for dinner. We had a Marriott dinner certificate that was going to expire (thanks to his former employer's wellness program). If you have never used one of these they are fantastic! Ours included appetizers, salad, entree, dessert, tip, and taxes for 2. You really need to take advantage of one of the nicer Marriott's to get the full benefits of this. We ate and ate and enjoyed delicious food. The restaurant was quiet and we didn't feel rushed. We were able to actually talk to one and another whilst enjoying the view.
We have no family anywhere near us, so we depend on a very good babysitter. In the past, we have been able to have a nurse on the weekends. For a while a friend, who is a nurse, would watch our kids once a month so we could go out.
Friday, September 25, 2009
Links for Care Notebooks
This has been a crazy week. We met with a nursing company on Monday afternoon, but thus far every nurse they have assigned to our case has been either a smoker or a cat owner.
I updated some links for places with how-to's for putting a Care Notebook together and also downloadable forms.
I updated some links for places with how-to's for putting a Care Notebook together and also downloadable forms.
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