Tag Archives: health care

Finding Coverage For The High Price Of A Feeding Disorder

I used to complain about the hefty price of $23 a can for Charlie’s specialty infant formula. We don’t qualify for WIC and I was told our insurance would not cover it. Until she was switched to another formula at nine months, I had to bite the bullet and pay out of pocket.

Just thinking about that first formula made me wince up until today. It was today that I found out the price of her latest medical food (formula is called medical food when children are no longer infants) and I thought I was going to be sick.

What is a mother to do when her child can not consume adequate nutrition through food but can not afford the doctor’s recommended alternative? There is no choice. I had to figure it out. I knew there had to be a way to get it covered. But, how?

First, I called Charlie’s primary insurance carrier. Sadly, each time I call Charlie’s insurance provider, I hope that the person answering will be friendly, helpful, and accommodating. Not this time. Not ever.

I got a smoke screen. The representative on the phone explained that our drug plan should cover it.

Next, I called Charlie’s prescription drug plan carrier. While I was invited to order the formula through the mail order pharmacy, I was told because it does not technically require a prescription to be dispensed it was not covered.

Afterwards, I called Charlie’s secondary insurance. This time, I was told Charlie’s doctor would have to call before they would even discuss coverage. The person was curt and would not provide any helpful details.

For a moment, I was frustrated and wanted to cry. However, I continued to hunt for a solution. During my search, I discovered many of the medical nutrition companies have pages on their websites that address insurance concerns such as the pages found here, here, here, and here. Apparently, I’m not the only parent who has faced or will face this problem.

I called one of the helplines offered off of a nutrition company’s website. The woman who answered was incredibly helpful in dealing with my insurance company. After an afternoon on the phone with Charlie’s insurance providers and waging a small battle, I found out it is possible to get medical food covered under the Durable Medical Equipment portion of the policies.

Charlie’s prescribing doctor needs to write a letter of medical necessity, supply the needed codes, and speak with the insurance providers. Things are now in his hands. There is a good chance the medical food will be covered.

For some time now, I’ve held on to the thought that the business side of our country’s health care system is shameful. I thought I had seen the worst of it ranging from the uncooperative and seemingly deceptive insurance companies to exorbitant pharmaceutical and equipment prices.

Today, my respect for our country’s health care system has reached a new low. I find it despicable that I’m excited by the slightest possibility I will be able to feed my child the nutrition she requires.



I’m Not A Doctor But I Play One When I Call The Pediatrician’s Office

For a couple of hours last night, Charlie screamed in pain. Other than when she was rehospitalized, I had not heard her scream in pain and it terrified me. She didn’t pull at her ears, touch her head, gnaw on her hand, rub anywhere on her body, nor provide any clues to what the problem was. There was no fever.  She simply screamed hysterically.

I spoke with the on call doctor last night. I explained how Charlie had behaved unusually through out the day and it culminated in the screaming. We discussed if and when she needed to be seen in the ED. The doctor suggested ways to remedy the pain and get her through the night. She explained that it is a tough situation to figure out without examining Charlie. Furthermore, she recommended that Charlie be seen in the office the next day (today).

This morning, I called for an appointment. The office staff asked, “What does the child have?” I answered, “She’s been screaming in pain. I don’t know the source.” The office staff suggested, “It is her ears then?” Frustrated, I took a deep breath and said, “I don’t know. It could be her ears, her stomach, or any other number of things. My baby is in pain and I need help figuring it out.”

“Ma,am, what do you think the problem is?” was the response. Was this a mind game? If I knew, I wouldn’t need help figuring it out and fixing it. The office staff once again suggested that it was the ears. I relented, “Fine, it’s the ears.” At this point, I would say anything to end the conversation that was going nowhere.

She provided me with an appointment time for this afternoon and I promptly hung up. I’m not a doctor but I’m expected to be one to schedule an appointment.

Programs, Waivers, And Forms… Oh My!

Any parent of a special needs child knows that expenses add up quickly. In addition to the usual child rearing expenses, we encounter expenses from PT, OT, speech therapy, doctor appointment co pays, dieticians, special formula, orthotics, home health nursing, and therapeutic equipment. Over the past few months, I sought information on programs for which we may qualify. Today, everything was in place to apply.

If you live in Virginia, I recommend Moms In Motion  for help with the Medicaid Waiver process. The organization does a great job providing explanations of the different types of Medicaid Waivers, who qualifies, and how to apply. In addition, they offer assistance with applying for two other programs that may be helpful for children with special needs.

For those who do not live in Virginia, ask your Early Intervention services coordinator for suggestions of where to start. Charlie’s services coordinator was extremely helpful with sending us literature and directed us to Moms in Motion. Another useful place to begin is the local department of social services.

Filling out the forms was time consuming and a little confusing. Honestly, some of the questions sounded like riddles. That is why it is helpful to have an agency like Moms in Motion available to answer questions. By the end of the process, I was more than a little frustrated and could only hope that I answered everything correctly. However, it was doable.

Thankfully, the forms are finally complete and ready to be submitted. My fingers are crossed that Charlie qualifies for one or more of the programs.




Another Vocabulary Word: Apraxia

Charlie’s appointment with the developmental pediatrics clinic yesterday was so-so. It could have gone better. On the other hand, it could have been worse. I have been given a new word to learn and digest: Apraxia.

The day started when Charlie met with the speech pathologist for her evaluation.

The speech pathologist was thrilled with Charlie’s feeding progress. When she was evaluated last April, she would not allow a spoon to pass her lips. Yesterday, Charlie happily munched on crackers and sipped juice through a straw. I proudly rattled off the list of foods Charlie will eat. We discussed my concerns that she often chokes and does not eat enough solid food to meet her nutritional requirements.

During the second half of the evaluation, the speech pathologist assessed Charlie’s speech delay. From what I understand, Charlie should have more words and the few words she has should be clearer. However, her receptive language (her understanding) is great. The speech pathologist mentioned the word apraxia.

The occupational therapist was the next to assess Charlie. During the evaluation, she placed a peg board with pegs in front of Charlie. I had not tried anything similar with Charlie and I wasn’t sure she would be able to do it. Much to my surprise, she followed the OT’s cues and placed the pegs in their holes. I was ecstatic.

Charlie tested slightly below her adjusted age which is a huge improvement over her past OT evaluations. I am proud of Charlie’s progress. A year ago, I was elated her hands had finally opened and she was strong enough to hold a light toy. I did not dare to hope that Charlie would be where she is today. There was too much heartbreak at stake.

Next, Charlie saw the developmental pediatrician. He further discussed apraxia with me and suggested, if at all possible, Charlie receive speech therapy twice a week. He mapped out the obstacles I face such as insurance coverage and finding an appropriate therapy program to provide services.

Also, we discussed whether or not Charlie needed another set of AFOs. He didn’t think it was necessary but wanted to see what the physical therapist suggested. Charlie has hypertonia in her ankles and hypotonia in her knees and hips. We finished our meeting with a discussion about changing from Early Intervention services to private center based services.

Finally, Charlie was assessed by the physical therapist. Overall, Charlie did really well (for Charlie). The physical therapist recommended that Charlie have shoe inserts rather than AFOs.

We finished the long day by fitting Charlie with her new inserts.

Overall, I’m delighted with Charlie’s progress in the PT, OT, and feeding part of the speech evaluation. Although, I’m a little crestfallen that her speech delay is more complicated and of greater concern than I had expected.

Now, I  have the task of implementing the clinic’s recommendations while navigating the obstacles of insurance and available services. It feels a little overwhelming. However, I am chipping away at things a little bit at a time. Hopefully, things will be in place before I know it. Day by day is all I can handle right now.


A Date With Fear

One of the many things I lost when I became a micro mom is my feeling of safety. As I have previously written, there was less than a .5% chance of my pregnancy ending like it did. Now, I find myself afraid even with the odds overwhelmingly in my favor.

The date for my cholecystectomy (gall bladder removal) was set today. The procedure is one of the more common surgical procedures and is an outpatient procedure in most cases. There is a small risk of complications.

I find none of this comforting.

Instead, I think of the odds games that we have lost despite things being in our favor. I am reminded of the battles we’ve won against the odds. I no longer have the thoughts of “It won’t happen to me” or “That kind of stuff happens to other people”. I very well know that it can happen to me and it frightens me.

Logically, I know things will turn out well. I want to feel better. But, the emotional side of me is terrified.

I wonder when my fear of the small percentages will dissipate. How do I get my safety back?


This afternoon, Charlie and I spent some time playing in the Shenandoah River State Park.

The Cost Of It All

Financial cost is a topic that I frequently see discussed on medical ethics blogs and rarely discussed on the preemie parent blogs. Although, it is a regular topic of conversation on the closed preemie boards. An exception to this generalization is the Love That Max post titled How Much Do Therapies Cost For Your Child With Special Needs.

I can tell you from our experience it is expensive to have a preemie and/or a special needs child. Even though our household has a respectable income and we have “good” insurance coverage for Charlie, our budget is tight.

Where do these expenses come from? Therapist co pays (if covered at all), specialist co pays, re hospitalizations, diagnostic test co pays, lab co pays,  special formula (not covered by insurance), orthotic co pays, medicines with $50 co pays, dietitian (not covered by insurance), and other special equipment (such as therapeutic equipment). That is in addition to all regular expenses involved with raising a child.

Charlie is priceless to me and I would take on even more cost if I had to for her. So, like other preemie moms, I learned to fight automatic denials,  have become an expert in Charlie’s insurance coverage, and am sure to document everything. My husband and I make our clothes last longer, go without vacations or date nights (we haven’t been out on our own together since Charlie has been home from the NICU), and shop at outlet stores. Also, I am learning about health programs that are available as she grows older.

As lousy as it is to be forced to fight for the coverage we pay for or have to pay completely out of pocket for things, I consider us lucky. I have met many preemie moms that have lost their homes or been forced to declare bankruptcy. I have even met a parent that had to take their child overseas to receive affordable treatment.

I am not sure what the answer is but our health care system is broken. Even though we did everything we were “supposed” to do, I feel like the system failed us. We are not alone. The majority of people in this country are one medical catastrophe away from financial ruin. I want to know how this is a good thing for our country.

It is time there is pragmatic talk about agreeable solutions. Even with insurance, the American dream frequently dies with the birth of a micro preemie.


Not Quite There

I really thought I was doing well. I assumed I was much further along with my healing than I am. It’s been a rough morning. I have been under the weather for a while now (you may have noticed the lack of posts). I suppose I’m weary from trying to keep up when feeling less than optimal. Whatever it is, this morning was an emotional minefield.

The bumpy morning started at one of my moms’ groups. As moms often do, they were discussing birth weights, birth stories, and all things newborn. I could relate to none of it. I was a stranger in a strange land. I hate that feeling.

Many of the babies accompanied their mothers while the older kids were gathered in groups elsewhere. I know better than to compare. However, I couldn’t help but notice how big the babies were, how easily they could move, how they held up their heads, and held on to toys. Every one of those things Charlie had to fight for.

My thoughts then trailed to Charlie. Recently, I have started leaving her in the toddler group. This is as poor of a fit as leaving her in the infant group.  However, she is more engaged with the toddlers than the infants. I feel bad she is carried while the others walk. I wish she could sit in a chair rather than the floor. She is in that odd spot of no longer being a baby but her physical skill set is not equitable to a toddler.

Afterwards, Charlie and I went Christmas shopping for our dog and cat. While at the store some lady came up to Charlie and said, “Oh! Is it your first Christmas?” Exhausted, I cut to the point and said, “No, she is eighteen months.” I think the woman thought I was being sarcastic. She gave me a stern look and walked off.

Finally, with it being the Christmas season, people throw the word miracle around more than usual. It bothers me when Charlie is referred to as a “miracle baby”. Yes, it is amazing she is alive. But please, don’t call her a miracle. Mostly, because it makes me feel guilty.  Where was the miracle the less fortunate (and more devout) families prayed for when they lost their babies? Why were we chosen to receive a miracle when we are certainly less than pious?

I refuse to believe god has anything to do with it. I feel better calling it luck. With the helping hand of medical science, we got lucky. In much of the same way that we were unlucky to have found ourselves in that position to begin with. To call it luck, does not entirely rid me of the guilt. But, it does ease it a little.

So yes, it was a rough morning. It was another reality check that I am a bit away from leaving this whole preemie thing behind me. Or maybe, I just need a nap.

Mixed Signals: My Experience Reading Medical Professionals

Whether a relationship is professional, personal, or something a little more unusual such as a doctor – patient relationship, communication is key. Many people make the mistake of believing that words are enough or all that matters. However, sometimes what is not said can provide more information than the words spoken.

For example, I was surprised to see the look of fear on a doctor’s face. The first time I saw it on a doctor’s face occurred during my pregnancy with Charlie. I had the miserable experience of having a cold while I was pregnant. A few days into the cold, I woke up and felt more tightness in my chest than usual. The feeling steadily increased throughout the day. I sent a text to my husband that read, “I must be really sick. Can you take me to the doctor? I’m having a hard time breathing.” By the time he hurried home, I found it difficult to talk.

There was no way we could have made it to the nearest hospital through northern Virginia rush hour traffic. We opted to go to the urgent care center a block away. We needed a doctor quickly and had no idea what was wrong with me. After arriving at the urgent care center, I was taken back immediately. The doctor hurried in and started treatment. I remember seeing the look on his face. His wide eyes and panicked expression conveyed his fear. He called out to the nurse, “Call 911!”

The ambulance came quickly and had everything necessary on board. I was treated on the way to the hospital. It was the first time I had a life threatening asthma attack. Up until then, my asthma had been more of a seasonal allergy nuisance.

Next, I received ambiguous answers on a few occasions. This way of saying something without actually saying anything is the most frustrating to me. The morning Charlie was delivered, the nurse told me to call my husband. I asked the nurse, “Are we having the baby today?” while my husband was on the phone. She answered, “If it were me, I would want my husband here.” I wanted to yell, “What the hell does that mean?”

As it turns out, that morning we were dealing with reversed end diastolic flow (more was coming out of Charlie than was going in) in the umbilical artery. The situation has a respectable perinatal mortality percentage.  I am not sure what I would have wanted to hear but being told a lot of nothing was not helpful.

Now, I grow suspicious and wonder what I’m not being told whenever a health professional avoids answering a question. The words “I don’t know” are perfectly acceptable for me to hear. I need it to be followed by who does know or how it will be figured out. I am more at ease with information… even unpleasant information. Bad outcomes are easier for me to deal with if I know it is a possibility. It is better than being blind sided with bad news.

Similarly, I find the look of quiet concern to be distressing. I saw this look many times when I first knew Charlie was significantly delayed. She had trouble moving, was rigid, and missed every motor milestone. Each time she had an appointment with a medical professional I voiced my concerns and asked questions. I had no idea what was wrong but I knew something was not right.

Each time, a doctor wore the same expression after examining her. Invariably, the expression was a mix of thought and concern with a slight narrowing of the eyes. I knew they were seeing what I was seeing. Yet, they did not say anything helpful to address it. Repeatedly seeing this expression is one reason why I did not stop asking questions until I found a doctor who could talk about it and guide me in how to help my baby.

Additionally, nervous habits can be equally as revealing. When I was hospitalized on the high risk perinatal floor, I noticed a pattern in my OB/GYN’s behavior. If there was no news, he would flutter around my room while fidgeting with his coffee and occasionally glance out the window as he spoke. If there was bad news, he pulled a chair up to my bedside and sat down to deliver it. I loathed seeing that chair approach my bedside. However, I was able to gauge the seriousness of my situation moment by moment via his nervous habits.

Finally, I’ve learned to communicate through indirect phrasing. For example, Charlie had an amazing nurse she regularly saw during her first year. As a first time mom, I had many questions. When I had questions concerning Charlie’s delays, issues, or developmental concerns, the nurse would answer with the phrase “If it were my child, I would…”. From one mother to another, it was code for “This is what you should do…”

Her responses were precious pieces of guidance during a time when so few people were willing to provide definitive answers. While I respect the option of self determination, sometimes I really just want to be told what I should do to help my child. Despite the wealth of health information available on the web, I need the expertise of health professionals to guide me and educate me.

To all the health professionals, I want you to know that sometimes what you don’t say resonates louder than what is said. To all the parents, ask direct questions if you feel you are receiving mixed signals. Information is power.

Progress Update

A couple of weeks ago, Charlie had her annual IFSP review. Normally, I dread these meetings. This past meeting was different. There was some exciting news along with the usual juggling act.

Charlie was assessed as having cognitive and social skills equivalent to her actual age. At her last pediatrician’s appointment, the pediatrician commented to Charlie, “It is just a matter of getting your body to do what you want it to.”

Charlie’s motor and speech (which includes feeding) skills are very slowly progressing. Nevertheless, they are progressing.

Currently, the task Charlie is having the most difficulty with is learning to walk. She repeatedly tries but falls each time (she has busted her face a few times). Instead, she has found ways to compensate. She walks on her knees or uses a baby sized chair like a walker. So far, it is unanimous among her regular health care providers that an orthotic will be helpful.

Tomorrow is a big day. Charlie has an appointment with her developmental pediatrician. My hope for the appointment is that options will be evaluated to help Charlie progress forward and learn to walk.

Until she successfully walks, I will continue to teach her how to pick herself back up.


Learning To Advocate

I very clearly remember meeting the NICU social worker.  It was a week after Charlie’s birth. She was explaining NICU life, support systems, available resources, etc. Fortunately, she handed a stack of papers to me with the information in written form. My mind wandered as I thought about my baby, wondered how we ended up there, and worried about my lack of milk. Despite the mental fog, I do remember hearing her say, “You need to advocate for your baby.”

That statement perplexed me. What did she mean by advocate? They are the professionals. Won’t they always do what is best for my baby? I am at their mercy. I barely know a thing about medicine and even less about babies. I felt powerless. For what am I supposed to advocate? It did not really make sense at the time. However, I remembered her making that remark.

During Charlie’s first two months in the NICU, she was at a very large hospital with a giant open NICU. There was not much reason I felt the need to advocate. It seemed like a waiting game. Everything changed when it was time for her transfer.

Once she was well enough, we were planning on having Charlie transfered to a smaller hospital with private NICU rooms. I felt like I was losing my mind being constantly on display in the big NICU. I did not mind the nurses. The other babies’ visitors were the people I had an issue with.

I was crushed each time I would hear, “I did not know babies that were that small could live!” as people walked by Charlie’s isolette. People who could not resist the urge to peek over the screen on the few occasions I was able to kangaroo with Charlie were annoying. It angered me when people in the NICU waiting room would let their children run wild while other families were receiving devastating news in the same space. Worst of all, were the people whom insisted they weren’t sick when a nurse asked them about a cough or sniffle. Inevitably, the whole NICU room (it happened three times during Charlie’s two months) would be “in isolation” the next week due to outbreak of illness.

The staff and nurses were great. I grew weary of the other people. The lack of privacy was starting to affect my baby’s care. Kangaroo care was not allowed during isolation and I did not want her to have an illness brought in to her.

Finally, the day came that Charlie was declared a “feeder grower”. It meant she was well enough for transfer. My husband and I were ecstatic. Our drive to the hospital would be much shorter and we could have our privacy! It would be one step closer to home.

We anxiously waited days for the transfer to happen. Each day, we were told that it was time. However, “It will probably happen tomorrow” was all that we were told.

After a week, I had enough. I told my husband, “I’m not leaving the hospital today until I get Charlie out.” I sent emails and had a face to face meeting. Charlie was scheduled to transfer in less than twenty four hours. In short, the problem was that she was lost in the system. I don’t know how long we would have waited had I not decided to speak up.

That was my first experience of advocating in Charlie’s care. At the time, I felt guilty for raising a fuss. I was concerned that I was creating problems. In hind sight, I do not regret it and see that it was necessary.

Later, there were smaller issues in which I needed to speak up. For example, there was a visit with a particular specialist. She asked, “Why is Charlie wearing pink?” as she entered the exam room. I was not offended. Things like that happen with a name like Charlie. When I explained Charlie was a girl, the doctor told me that if I wanted to call my baby Charlie then I should have named her Charlotte. After she inquired why Charlie was so small, I requested Charlie be examined by another doctor.

The biggest and most recent example of advocacy occurred when Charlie could not move. I was told by numerous health professionals to “wait and see”. However, I knew that something was “not right”.

She missed all of her milestones at three months (adjusted). At six months, we were still waiting. I saw the look on the faces of medical personnel as they examined her. It was the look of quiet concern. I saw that look plenty of times during the three and a half months she and I were hospitalized. I wanted someone to come up with a plan rather than “wait and see”. I made sure that Charlie’s case was not handed off or left needlessly waiting. I asked questions and prodded for action. Mostly, I made sure that Charlie got the care she needed.

In the end, it does not matter to me if I come of as neurotic, pushy, obnoxious, or difficult. It is about Charlie, not me. What matters is that Charlie receive every opportunity to have a healthy and well adjusted life.

To me, being an advocate does not mean making sure that things are always fair. That would be an endless and impossible task because life is not fair. Instead, being an advocate means speaking up so Charlie gets what she needs.

I consider it fortuitous that out of everything that social worker said, I heard her instructions to advocate.


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