Charlie’s Big Week Ahead

Charlie doesn’t know it but next week is a big week in her world.

First, we are taking her to see her favorite Sesame Street character, Elmo, at Busch Gardens. I wanted to take her to see Elmo since the weather warmed up. Things such as schedules and finances finally worked out so we can take her this upcoming week.

I would be lying if I said I wasn’t excited.

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Next, Charlie is being freed from her crib. I want to say she is moving to a big girl bed. In reality, she’s having the front rail taken off of her crib to make a toddler day bed.

Most of my friends have posted on Facebook the day their kid first climbed out of the crib. I planned on keeping Charlie in her crib until she reached that day.

However, Charlie keeps getting stuck in the bars of her crib as she tries to get out. Nap time is frequently interrupted by Charlie’s desperate cries for help. She finds new and inventive ways to become trapped.

A couple of times, I considered breaking a bar to free her. Charlie hasn’t realized that, try as she might, she will not escape the crib through the bars.

Part of me is a little sad that we don’t get to have that moment of when she does finally climb out of the crib. The sadness is short lived because my mind is busy figuring out the logistics of this change.

I have additional concerns on top of those concerning bedding and Charlie staying in bed. Her room, although currently childproof, will have to become Charlie proof. She likes to pull the clothes and diapers out of her drawers, dump the laundry basket, and carry out whatever other mischief she can invent. Her room will be rearranged.

Next week is a big week for Charlie. I can’t wait to see how it all plays out.

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Charlie visited Sky Meadows State Park today and enjoyed the gorgeous weather.


The Follow Up

Charlie had her follow up appointment with the developmental clinic yesterday. Other than having to wake up before dawn, the day went pretty smoothly. Overall, it was uneventful. I’ll take it.

Her assessments didn’t discover any new issues. The doctor discussed his ongoing concerns. As Charlie grows older, it is becoming clearer that apraxia is at the root of her speech and feeding delay.

However, her speech delay doesn’t stop her from socializing.

Tonight, she was at the kick off of a March of Dimes March For Babies campaign. She enjoyed meeting the area’s team captains.

She also enjoyed exploring the grounds where the walk is going to be held.

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Specialty Clinic On The Horizon

On Wednesday, Charlie will make the two hour journey for her follow up appointments (she gets reassessed in several areas) with developmental pediatrics. I admit, I am a little nervous. The past couple of visits to the clinic did not go so well for us.

I realize we are lucky and Charlie is doing really well considering her extremely premature arrival. But, I can’t shake the feeling that we should be done with all this. I’m kind of like a little kid pouting and saying to myself, “We weren’t supposed to have this challenging of a journey.”

For some reason, it was easier for me to accept the long NICU stay than it is the long period it will take Charlie to “catch up”, if ever.

Sometimes, I think I should stop hoping for the end of specialty clinic visits, regular insurance phone calls, and numerous therapy appointments. Because I hope, each follow up with the developmental pediatrician feels how I imagine a prisoner must feel before a parole board. I see the progress Charlie has made and dare to think, “It won’t be long now until we are finished with this.”

However, my hopes are shot down when a new area of concern is discussed or limited progress is pointed out. Often, I knew of the issue beforehand. However, I had anticipated it wasn’t a big deal. Or, I assumed it could easily be addressed.

Additionally, I feel guilty and greedy for wanting more. We are fortunate Charlie is doing well. That should be enough. I feel selfish for desperately wanting her to “catch up”.

I am not sure what is going to happen on Wednesday. Maybe that is why I’m already anxious and thinking about it. I have my fingers crossed it’s going to be a good appointment.

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Charlie visited Skyline Drive this weekend.

 


Charlie Stops For Nothing

Hectic is a good word to describe the past week. Over the course of the week, I’ve completed Charlie’s medicaid waiver forms, worked towards getting the insurance claim for the formula approved, and attended to Charlie’s usual busy schedule. Things were a little more difficult because I’ve been under the weather.

Despite the stress, I feel like there was much accomplished. Additionally, I decided to make some needed changes. Basically, I need to reapportion and move stuff around on my plate.

For the most part, the people in my world won’t notice the changes.  The biggest of which is that I’m cutting back on the frequency of my personal blog posts. I don’t feel the urge to post as often as in the past. Plus, I want to pursue to new interests and work on moving forward.

Of course, none of this matters to Charlie. She has been playful and active all week. I have no idea where this toddler gets her energy from.

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My Favorite Sound

Charlie joined me today as I picked through a clearance sale at the mall. She pretended she was looking for clothes and rifled through the racks beside me. After she became bored, she played peek a boo with anyone that looked her way.

A sales lady got sucked into a game of peek a boo with Charlie. As the laughter from both sides died down, the lady asked Charlie what her name was. Charlie smiled at the lady, fidgeted with her hair, squirmed, and remained silent. The pause in the conversation became uncomfortable. I jumped in and answered for Charlie.

The lady asked, “How old are you Charlie?” Charlie answered with babble. The lady looked somewhat surprised to hear a toddler babble. I disclosed, “She doesn’t talk yet.”

I’ve been cranky and exhausted from this past week.

I was too tired to explain Charlie’s early arrival. I didn’t have the patience to hear a stranger’s awkward remarks upon receiving the information. I was not in the mood to discuss diagnoses and how we hope she will one day “catch up”.

I just wanted to find some deeply discounted clothes and get out of there.

Speech, like feeding, is one of those skills that Charlie struggles with. The good news is that she is improving. While she continues to babble, Charlie now has twenty eight words.

Among those words are “hop” for help, “Melmo” for Elmo, bye-bye, eat, and happy. Sometimes when Charlie is having fun she repeats “Happy, happy, happy, happy, happy…” with a huge grin. I’m nearly brought to tears each time she does it.

However, Charlie started using my personal favorite word a few weeks ago… mommy.

Charlie learned to say her name a few weeks ago as well.


Hard At Work

I’ve had my hands full dealing with insurance companies, medicaid waivers, and doctor’s orders. Once I get everything figured out I will post what worked for us and what didn’t.

In the meantime, my distractions have not prevented Charlie from making the most of her summer.

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I Didn’t Realize It Was Miserable

Thanks to the Parker Lee Project, Charlie received her first case of her new formula yesterday. It has only been a day since Charlie started her new formula but, I’ve already noticed a huge difference. I didn’t realize how miserable feeding had been for us until today.

Charlie has been learning to eat solids for over a year with limited success. Until yesterday, her major source of nourishment was from a partially hydrolyzed whey protein infant formula.

However, this posed two problems that we (her daddy and I) were aware of. First, the formula tasted disgusting so we had to get creative about disguising the flavor. Second, there weren’t enough calories in infant formula to satiate Charlie.  The formula had to be fortified with pretty much any food that flowed through a cross cut nipple.

Honestly, we had no idea what we were doing. But, as long as she continued to grow and gain weight everyone seemed happy with the approach. We (her doctors, her daddy, and I) hoped the spit up, reflux, and vomiting was something she would outgrow.

Feeding had become a complex process of guesswork and mixing of formula with food substances that Charlie was coaxed to eat. She was good about it. Better than I would have been.

But, there was a lot of spit up and occasionally she would vomit for what seemed like no reason at all. We constantly reminded anyone who played with Charlie, “Careful, don’t make her throw up!” Her crib sheets needed to be changed, at least, every two days due to spit up stains. This was our normal.

After her evaluation at the feeding clinic, we learned that Charlie has difficulty with chewing, trouble coordinating the movement of food with swallowing, a sensitive gag reflex, slow gastric emptying, poor motility, and a casein allergy. The gastroenterologist prescribed a specialty formula (a fully hydrolyzed whey protein pediatric medical food with fiber).

There has been a noticeable difference only a day after the switch to the new (and more appropriate) formula.

While it smells gross, Charlie readily eats the new vanilla flavored formula. There is no mixing or convincing her to eat. Plus, she hasn’t spit up or vomited since the introduction of the new formula yesterday morning. Her reflux has improved significantly.

I had no idea how stressful and awful Charlie’s feeding and GI issues were until they improved. It wasn’t until I felt an overwhelming sense of relief when feeding Charlie this morning that I realized how bad things were. I feel somewhat guilty for not making the realization and insisting that the issue be addressed sooner.

As a side note, I would like to inform my readers about The Parker Lee Project. Through the amazing work of the organization, parents in need of medical supplies can apply for the supplies (if available) free of charge. I’m grateful The Parker Lee Project supplied us with thirty days of formula (almost $1000 worth) while we wait for the paperwork to be processed with insurance and the durable medical equipment provider.

Additionally, those who have extra medical supplies that a child has out grown or no longer requires can donate them to this organization. Financial contributions are also appreciated.

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Charlie golfed a little on the Fourth.

 

 


Happy Fourth of July!!!!

Happy Fourth of July! This is Charlie’s third Fourth of July celebration.

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The Power Of Photos

I’m one of those moms. I take a few minutes in the midst of the action to snap photos. Some people may find it annoying. Others, comment that I’m not really enjoying the moment if I’m busy taking pictures. To the former, I apologize and to the later, I beg to differ.

Photos are my way of capturing memories. You’ve probably noticed from my photos, I don’t worry about lining up the perfect shot or finding decent light. I pull out my cell phone in the moment and snap several pictures for a minute or two.

At least, one of those pictures will turn out. The memory of the day will live on with my memento.

bearcreeklakeFor example, when I see the picture on the left, I’m reminded of the first cool, crisp autumn day of last year. I remember how Charlie laughed at the sound the lake animals made as they splashed through the surface. The picture is a reminder of the ranger who paused with a surprised expression when he noticed our unusual approach to hiking. It was one of her last hikes in the infant seat attachment.

Similarly, I have countless photos that take me back to another time and place. Photos have the power to jog our memories of things that may otherwise be forgotten.

In the NICU, I wondered if it was “right” to take pictures. Did I want to remember my baby like this? Was it right to photograph a sick baby?

Day of BirthAt first, I took pictures because I wanted people to see my baby. We didn’t have many visitors and the pictures were a way to proudly announce her arrival.

Later, I started to take pictures for my scrap book (our NICU offered a scrap booking class). I’m so glad I took those pictures, for two reasons. Now, I can see how far she has come. And, if we had lost Charlie in the NICU, we would have had some pictures to remember her by.

What’s not in pictures can also be a reminder.

Unfortunately, there are only a couple of pictures of Charlie and I together in the NICU. There was no one to take them. It reminds me of what an incredibly lonely time it was.

I regret the pictures not taken.

So yes, I am one of those moms who snaps what may be too many pictures. However, the reason for the photos is not to “one up” my friends on Instagram or have the picture perfect life on Facebook. It’s because this is the only baby experience I will ever have and I want to remember every possible bit of it.

I took a lot of pictures at the fountain yesterday.

I took a lot of pictures at the fountain yesterday.

 

 


Wordless Wednesday

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NICU Reunion: Take Two

10492524_10101775114538109_8279231079749444152_n (1)We did it! Today, Charlie and I attended our second annual NICU reunion. Despite my reservations, it was certainly easier the second time around.

Charlie and I arrived and said our initial hellos. Then, I grabbed a seat out in the courtyard under the shade of a tree and watched from the sidelines as Charlie wandered around close by.

There were several children’s activities available but Charlie chose to obsess over the storm drain in the center of the courtyard. She laughed and clapped as she walked back and forth over the drain. Eventually, she found the mulch more interesting and occupied the rest of her play time by tossing it in the air.

Afterwards, we saw Charlie’s primary nurse. It was tough but I stuck to my promise that I wouldn’t cry this year. We talked while the other nurses passed around Charlie and doted over her. Charlie flirted shamelessly.

My friend graciously supplied this picture (and permission) for this post.

My friend graciously supplied this picture (and permission for its use).

Today, had a very different feel.  The memories and emotions were not as intense. However, the hospital food was just as bad as I remember it.

It wasn’t long before we had enough and it was time to leave. My NICU mom friend and her daughter joined us for lunch afterwards at a near by restaurant.

Overall, I’m glad we attended this year’s reunion. Last year, I was still reeling from the relatively fresh news that Charlie had bigger issues than expected. This year, I’ve figured out how to roll with what is thrown at us. And Charlie… well, she’s never given up and it shows.

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NICU Reunion Ahead

This weekend is Charlie’s NICU reunion. I think it’s supposed to be a happy event. However, I have mixed emotions.

Last year’s reunion was the first one Charlie and I attended. To be honest, it was tough. The walk from the parking garage to the hospital conference center was like a walk through a dream. The sights, sounds, and smells stir up so many emotions that the whole thing becomes really overwhelming.

It’s difficult to see the babies that were sicker than Charlie who are now so much further ahead. It’s hard to bring back the baby, that everyone thought would catch up by two, with noticeable delays.

Why go back? Why put myself through this? There are many reasons.

Gratitude is one reason. Our attendance at the NICU reunion is a way of saying thanks to the people who saved my baby and helped me. It’s incredible to see Charlie’s primary NICU nurse.

Another reason is the other NICU parents. I want to see the other parents who were there with me for the majority of Charlie’s three months. I want to know they are well.

The final and most important reason: It’s for me. I’m not going to let the trauma trump me. Each time I go back is an opportunity to process things further. It’s a chance to move ahead in my attempt to leave the trauma of her NICU stay behind me.

Ready or not, here we go… again.

A mommy and me selfie taken today during backyard play.

A mommy and me selfie taken today during backyard play.


The Countdown Begins

Sometimes when I’m around other parents, I feel like a puzzle piece that doesn’t quite fit with the rest of the puzzle. We do have the shared experience of being parents. But, that’s where the similarities end.

I’ve lost my connection with the common parenting experience. I read things other parents sometimes write and I wonder, “Who are these people? How is it possible we live on the same planet, the same country, or even the same state?”

When I’m out running errands, I hear other mothers talk. Their concerns are nowhere close to mine. For example:

For me, vaccines didn’t feel like an option. After spending three months around very young children who were critically ill, it seemed foolish not to vaccinate.

I hate that I know about the Durable Medical Equipment part of a health insurance policy, where the closest pediatric emergency department is, and about epo injections.

I can’t help but think a newborn over five pounds is big.

I don’t want my child to learn to read before kindergarten, be fluent in Mandarin, or become a musical virtuoso. I just want my child to learn to talk. Maybe one day, she will be able to tell me she loves me back.

Toilet training is way ahead of my map. Due to circumstances, we will toilet train much later than most. For the record,  I don’t think that wipe warmers are frivolous when a baby has sensory issues.

I don’t worry about organics, GMOs, or junk food. I would be thrilled to see my child chew AND swallow a bite of anything.

These are only a few of the disconnects. Premature birth has shaken my world to its core. Since Charlie’s birth, there has been only one time and place that I felt like I fit completely into a puzzle. It was at last year’s March of Dimes ShareUnion.

This year’s ShareUnion is just around the corner (in 85 days). Let it be noted, my countdown has begun.

I look forward to spending time with other parents who understand and possibly live in my world. There will be no talk of the “right” way to do things or perfection. Instead, there is understanding and encouragement.

I can’t wait to be in Phoenix in September. I would even walk if I had to.

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Midnight Cleaning

I’m writing a very quick post tonight. Charlie went to bed early this evening. I’m taking advantage of the free time and cleaning the house.

The only reason I’m posting is because I promised someone I’d post new pictures tonight. These pics are from a recent playground session. Now back to cleaning…

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Pumping, Consultants, and Latching… Oh My!

Let me be clear, I am not a lactivist. As long as people feed their child adequately, I don’t care how the job gets done. Life is too complicated to insist that there is only one correct way to do something.

In my situation, breastfeeding did not work out. But, I know many women who have been helped by lactation consultants and were able to breastfeed.

My dear friend, Sally, has asked me to pass along this survey concerning lactation consultants. If you’ve ever breastfed (including if you ever pumped) and used a lactation consultant, please take a moment to complete the survey.

Now that the survey has been addressed, I have a question. I am curious. What were other NICU parents’ experiences like with pumping?

We found a playground with a balance beam to work on Charlie's core strength.

Today, we found a playground with a balance beam to work on Charlie’s core strength.


Ten Ways Life Changes After Having A Preemie

10 ways

1) You have acquired basic nursing skills. During my baby’s NICU stay I learned to give epo injections, insert an NG tube, read monitors, perform infant CPR, and various other skills. Many were required in order to take my baby home.

2) The smell of hospital food makes your stomach turn. With my stay on the high risk perinatal unit included, we have spent over one hundred days of Charlie’s first year in the hospital. I could happily live my life without ever tasting hospital food again. I don’t know why they serve it every year at the NICU reunion.

3) Sizes lose all relevance. Charlie fit into newborn clothes for three months after she came home from the NICU. At the age of two, she wears sizes twelve to eighteen months.

4) Simple questions become complicated. The questions that people generally ask new parents can’t easily be answered. It starts in the NICU with “When is he/she coming home?” Then it continues with questions like, “How old is your baby?” or “Are you breast feeding?”

5) You learn loads of medical terminology. You know what a physiatrist is. You understand what words and abbreviations like apnea, bradycardia, IVH, tachycardia, desaturation, bilirubin, CPAP, hematocrit, NEC, PVL, and ROP mean.

6) Baby showers are complex situations. Baby showers are emotionally loaded. If you are brave enough to attend one, you wonder how to socially appropriately join conversations about birth stories and pregnancy. All the while, you are trying to get over that feeling of being the elephant in the room (being the physical proof of one of the many ways a pregnancy can go wrong).

7) People constantly remind you how lucky you are. I realize we were lucky. We got to bring our baby home. However, there are days I don’t feel lucky. On some days, I feel like we lost. On those days, I resent people who feel the need to tell me how lucky we are. I wonder why people don’t have the urge to tell every mother of a newborn how lucky she is to have had a full term pregnancy.

8) Things are put into perspective. For me, facing the possibility of losing my child was looking my greatest fear head on. Everything else in comparison is small potatoes.

9) You almost become an expert on insurance policies. As much as insurance companies try to misguide you, you’ve managed to learn about automatic denials, appeals, DME coverage, and much more. You learn not to accept the first “No” as the answer. You fight and you fight like hell.

10) No accomplishment is ever small. I remember the date that Charlie first rolled over (January 27, 2013) and the date she took her first steps (January 7, 2014). She worked incredibly hard to reach these developmental milestones and nobody was sure that she would reach them. Every little thing, from tolerating food in her mouth to learning to wave, is a cause for celebration.

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Preemie Babies 101: How A Preemie Birth Affected My Relationships

Today’s post can be found as a guest post on Preemie Babies 101.

My baby, Charlie, was born the day she reached twenty six weeks gestation and weighed a mere one pound eleven ounces. Where as most babies are greeted into the world amidst celebration, my baby entered the world to stunned silence. The shock and trauma of her early arrival not only stole the pure joy of what was supposed to be a jubilant event but, it (and the subsequent NICU stay) altered many of my relationships. Read more… 


But She’s Healthy Now, Right?

Last night, I made a quick trip to the store by myself. The cashier scanned the baby oatmeal and asked, “How old is your baby?” I told her that she just turned two. The cashier said she had a two year old and there is no way her two year old would eat baby oatmeal. I explained my baby was born at twenty six weeks and it complicates things. The cashier’s immediate response was to pose the question, “But she’s healthy now, right?”

I have no idea how to answer the question. Do I be polite and give her the answer she wants to hear? Or, do I use the moment to be truthful?

I want people to know that, despite everything, things are OK, her life has quality, and we are happy. On the other hand, there are still numerous specialists, therapists, and concerns involved in our daily life. She is not what many would consider “healthy”.

I want others to know that babies like Charlie don’t go home from the NICU and become immediately healthy. It’s a long, tough road and the end isn’t in sight for us.

At the very least, I don’t want to perpetuate the myth that all preemies catch up by two.

I suppose I could have ended the conversation by saying, “Yes, she’s healthy now” and left it at that. Instead, I answered with, “She’s getting there. She needs time and therapy. But, we are well.”

How do other parents of preemies answer this question?

She was very happy to find a baby pool in the yard this morning.

She was very happy to find a baby pool in the yard this morning.


Checked Back In

Earlier this week, I realized I checked out at some point. I was preoccupied with a battle in my ongoing war with insurance companies, engrossed with the latest tasks involving Charlie’s feeding struggles, and busy with the daily therapy routines. Indeed, I had checked out. I was running on auto pilot and oblivious to the outside world.

Fortunately, there are days, like today, that accidentally come to my rescue.

napI almost didn’t go today. I had a list of excuses. My back hurts, my asthma is flaring up, I’m tired, there will be too many people on the road, and just about every other conceivable reason not too.

Last year, when Charlie, my husband, and I visited Chippokes Plantation State Park, we made the mistake of not planning enough time for the visit. Since then, I have wanted to return to do the things we didn’t have enough time to do during our first visit. Last month, I marked today on the calendar as the day of our return.

I watched the date creep up and thought about procrastinating. “The park will always be there”, I told myself. “We can go at any time.” My list of excuses circulated through my head over the last week.

Despite everything, last night, I made the decision to follow through with my plans.

I’m so glad that I did.

swimThe weather was perfect when we pulled into the park. There was a cool breeze in the air as we ate our picnic lunch in the shade by the river. It was nice but I was not that easily convinced I made the right decision.

After lunch, we followed a trail to the historical section of the park and spotted a snake swimming in the river. We were escorted the length of our walk by Zebra Swallowtail Butterflies. Charlie heard frogs croak for the first time.

OK, so maybe leaving the house was a good plan.

At the Farm and Forestry Museum, a barn cat hung out in the rafters, baby birds nested in an overhang, and… a bunny! It was official. I was smiling.

Things continued to look up throughout the day.

Charlie tailed a woman walking a beagle and wandered up to a man playing a violin. She laughed and clapped as he played. A park staff member offered Charlie a ball to play with. She gleefully bounced the ball and chased it over and over. It was tough to leave the spot to go for a swim.

pigFollowing the swim, Charlie napped in the shade and quiet of a garden while her dad took a mansion tour.

We concluded the day trip by visiting pasture animals as the park staff fed them.

I go through stints where the noise, chaos, and uncertainty of my world is too much. I feel defeated. My natural reaction to this is to shy away from people and unnecessary outings. It’s a survival mode I’m all too familiar with.

Honestly, I am not sure why I decided to go today.  But, I’m thankful I didn’t miss out. Today was precisely what I needed. I’m not up to 100% yet but, I have checked back in.

The pictures on the left were taken at the park last June. The pictures on the right were taken today.

The pictures on the left were taken at the park last June. The pictures on the right were taken today.


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.

 

 


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