Wednesday, December 30, 2009

Children's Face Masks

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 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.

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.

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.

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
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.

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.

Saturday, September 19, 2009

Being Organized #1- Care Notebook

I typically function with organized piles on my desk, in my laundry room, on my dresser, etc. However, in the first half of 2007 Talli spent a lot of time in the hospital with various types of sepsis, septic arthritis, and port change outs that I decided to put the time sitting in her room every day to good use. I put together her "Care Notebook".

This has been a life saver, time saver, and very much worth the 15 or so pounds it weighs to take to each appointment and hospitalization. It helps to keep me focused at appointments, especially if I have all of my kids with me. I think it adds credibility to me as a parent because I can give specifics to a physician on her history, labs, and medications; when I can give them a list that they can copy for her chart.

A fellow board member at the Propionic Acidemia Foundation put together the basic structure for the one I use, however, I add and take away as seems appropriate.

I recently took out all discharge paperwork out of the notebook. They just took up too much space and didn't really convey any information that I didn't have somewhere else. Also, the specifics of what medications were given at what time the day of discharge doesn't add anything to her overall health plans 6 months later. I tossed what I didn't need, the rest got filed.

It is a 3" D-ring notebook. I have two sets of write-on divider tabs (we need that many!). A velcro pocket folder holds prescriptions given to us at appointments or small notes. A business card holder keeps the cards from her various specialists. I used to keep a small 3-ring hole punch in there, but I really needed the space, the same goes for a pencil/pen case. A CD holder keeps digital medical files, which are mainly x-rays and other radiological studies.

I have smaller versions of the Care Notebook for all of my kids and myself. My husband has excellent health and sees a doctor for an annual physical because I make him. Other than that, he usually has some sort of major accident every 7-10 years, but since he has no underlying conditions we don't need to tote any records to the hospital with us.

When we goto appointments I carry Talli's Care Notebook in a canvas bag. When she is going to the hospital it goes in our hospital bag, which I will write about at another time.

Sections of Care Notebook:
-About Me Emergency Contact information; Emergency Information Form for Children with Special Needs; general information about likes, pets, foods, bedtime, etc. (think along the lines of someone stepping into your role and needing to know that your child will throw up ANY mixed texture food); Birth & Early Development; Diagnosis history, Medic Alert Record Summary, Medications (I use Post-it flags for each current med);

-Labs & Tests I am phasing out this section. I put labs in chronological order by type, so all CBCs were together, etc. However, for the most part it is a specific physician ordering a specific test, so I am now putting them in the sections for each specialty. The medical records prints labs for 2 different specialties on the same page, I copy it, so each lab can be in the proper section.

-Hospitalizations (This section is never up to date) It lists the dates of admission, name of hospital, address, doctor's names, reason, and outcome. Talli has had over 100 hospitalizations if you count outpatient visits, which is why it is not up to date.

-Contacts Health Insurance information, including a copy of each card. I keep expired cards as well, as billing can sometimes be delayed more than 12 months. Hospitals we use; the business card holder with provider information AND device information. For each implanted device she has had we have had an ID card with information regarding placement and model/serial #s.

-Supplies A descriptions of each supply ordered; company ordered through; reason needed; comments; prescribing doctor; and contact person at insurance if prior approval is needed.

-Nursing/Home Health Contact information for all companies; services performed; frequency; notes; and a phone log.

-Specialist subsections This is the reason we need 2 sets of divider tabs. Genetics; Nutrition; Pediatrician; Cardiology/Electrophysiology; Gastroenterology; Hematology; Allergy/Immunology; Endocrine; Orthopedics; ENT.

For each subsection I have the following: Contact information for the office & nurse; Phone log; Clinic Visit notes (these are my notes for each appointment); letters written by doctor to school, for ER visits, for travel, etc.; labs specific to that specialty.

-Medical Assistance/Case Management Programs We have case management through a state program for her metabolic disorder, so I have contact info and a phone log for that. I also have a section for the Case Management at our Primary Insurance company.

-Infusion Log A record of all Intravenous Immune Globulin infusions that she has received.

-Glossary/Reference Information This is VERY useful. It lists medical terms specific to her metabolic disorder, how to calculate things like Anion Gap, which may not be calculated on a lab sheet, Blood pressure reference chart by age & height; growth charts (If she didn't have growth concerns because of other medical conditions, I would have this in my pediatrician section, but since GI, allergy, endrocine, and genetics all care I keep it here).

-Forms extra forms for the Notebook, like phone logs and clinic visit sheets. I also keep school medication forms in case she is prescribed a medication that her nurse will have to give her at school.

I keep all of the Care Notebooks in a cabinet in my family room. The person who would take care of my kids in the short term if something ever happened to us knows where the Notebooks are kept.

I hope to post links to Care Notebooks and photos this next week.

Monday, September 14, 2009


My daughter is g-tube fed overnight. She wears S/M Goodnights when she sleeps, which do not hold enough most nights and she pees through them. We will be moving to some custom cloth pull-on pants as she had some bleeding sores from wearing them for a week at the hospital. We expect to continue night feedings as kids with Propionic Acidemia gave better labs if they do.

When she was a baby I consulted the book Baby Bargains and it suggested The Company Store for crib sheets. I got a couple of flannel crib sheets, which held up to twice a week laundering for almost 4 years. They no longer sell the flannel crib sheets, but their percale is almost as durable.

We use all cotton bedding for her as she is on L-carnitine. Carnitine causes a "fish" smell, which worsens with constipation and is concentrated in sweat, urine, and stool. The smell seems to hold onto synthetic fabrics, hence the reason for the all cotton.

mattress cover
Her mattress is encased in a high quality cotton dust mite cover. I highly recommend one that is zippered fully on three sides for easier removal. I purchased hers from National Allergy.

For sheets I mentioned above, we use Company Store. There is an outlet in Madison, WI that has great deals on bedding. We have 2 flannel set sets and 3 percale. One set I got on clearance for $6.99 and another I got used on ebay because it was a very cute ballerina print.

water proof barriers
For a while we used Carter's waterproof crib pads, which are two layers of flannel with a waterproof layer in the middle. They can be hard to find in the stores and after many washings the layers start to peel away from each other and the water proof protection goes away. Sometimes I see them at Babies R Us, Kohls, and Carter's Outlet.

What I prefer is a custom made mattress pad from a WAHM that I found through She used a layer of PUL (for the waterproofing) and a layer of white fleece. She can also add suedecloth, flannel and Zorb. She was pretty quick to get it to me and was comparable in price to the Carter's crib pads. I line dry mind so the PUL will last longer. By the time the rest of the load is dry in the dry this is dry as well. Her store is on hyena cart.

I love to quilt and for a while my daughter loved ballerinas. I pieced a cute all cotton quilt together and a friend used her quilting machine to do the actual quilting on it. Well, it is just not holding up. It probably gets washed 3-4 times a month and the binding is shot and there are a couple of small holes.

What has been far more durable are flannel Company Store duvet covers and all cotton blankets from JC Penny. I do not have a duvet in the cover mainly because of her dust mite allergy and since we are changing her bed almost everyday it would be an additional pain to move the duvet around.

Sunday, September 13, 2009


I have been thinking a lot about the importance of friends. Today, I was able to attend Church services while my husband stayed home with the kids. There was a case of H1N1 in our congregation, so we are being cautious. In our women's meeting, the lesson was on friendship and the importance of having and being a friend.

It is so important for those with special needs kids to have good friends. The ones that will sit with you while your child is critically ill, calls you to make sure you have eaten, brings you dinner (or Portillo's chocolate cake), gets away with you, and watches your other children when you have appointments.

A night out
Last night, I was able to get a much needed break. A girlfriend and I went out for a small bite to eat. We didn't like the atmosphere of the first place we chose, so with the top down on my husband's convertible (and car seats in the backseat) we headed to a different local that had some live music. She laughed at me ordering a Shirley Temple (they only had Diet Coke, which I hate) and we talked, people watched, and listened to the band play.

We had a few hours of peace. There were no crisis at either of our homes. Formula was made and medicine was given without any calls to check in with me. We laughed and joked and talked about death and sickness.

I also got a small dose of nostalgia when I tasted the chips that we had ordered, served with Ranch dressing. They tasted just like the "spuds" that my favorite pizza place served in my hometown in Oregon. Pizza and spuds were always served with Ranch, although, there was ketsup available, which I prefer. Many family dinners were held at Abby's Pizza, after football game gatherings in high school, and our traditional Christmas Eve dinner was often there.

Hand holding
I am grateful for the friends who would sit with me in a hospital room with my daughter, hold my hand while she was in a lengthy surgery, and watch at a bedside while I tried to comfort my daughter through the pain of one of many surgeries. The two friends who recently did this with me are not strangers to hospitals. One has a husband with Stage 4 kidney cancer, who is in his early 30's. The other has a son with Propionic Acidemia and has spent almost as much time in a hospital as we have, knowing that many hospitalizations could end up with one less child at home.

Another friend, whom I saw today is not a person I have known for very long. We first chatted at a New Year's Eve party that she threw to welcome in 2009. She is a nurse and knew my daughter had allergies, so she was pointing out how foods had been prepared and which items were definitely not safe for her that night. A few weeks later, her oldest child felt ill and within a few days had a heart transplant. Since I couldn't visit her, while her son was in the hospital, I wrote letters to her and we chatted once her son could be back out in public. Today, as she touched my arm and said "I am so sorry, I just found out." I felt loved, comforted, and understood. While a defibrillator (ICD) is much less serious than a heart transplant, we understand the others experience.

What a relief it is after a stressful tiring day to have someone bring you a meal. Last week, we were blessed by two friends bringing our family dinner.

Other times, friends have driven through a snow storm to bring us food at the hospital after a lengthy stay and had pizza delivered because they couldn't quite get dinner on the table at their own home either.

Thursday, September 10, 2009

Special Needs Mama

I am a private person for the most part, but am willing to share if someone asks about me or my experiences.

After spending a weeking in a hospital PICU with my 7 year old and two frustrating days at home arranging for her care I thought that I should at least share some of my experience to help others. I have liked to think that I could be a regular stay at home mom and handle the care of all of my children myself. It has come to a point where that is not the case and I need someone here in my home to help me. This has been a more difficult change than having her feeding tube placed because I have to fight for it.

My seven year old has Propionic Acidemia (, secondary immune deficiency (, Long QT Syndrome (, asthma, allergies, GERD, esophagitis, and hypothyroidism. She is primarily tube fed with her Zevex Entralite that we love! She is also a lover of almost everything: people, amusement park rides, Chuck E Cheese, everything electronic, her brothers, her classmates, her imperfect parents, fishing, playgrounds, etc. She seems to be able to balance in her mind the trauma of needle sticks and IVs with the video games she will play at the hospital and TV she can watch on the way to appointments.

We have two healthy boys. A 2 year old with some pending allergy tests, who had his tongue clipped at 4 weeks, and a 5 month old preemie who is delighted by his siblings as much as they delight in him.