The Darkness

“The darkness is all he’s ever known”. I was having a conversation last weekend about Carter’s personality and whether his happy go-lucky disposition was something he was born with or a coping mechanism he used to adapt to the card Life dealt him. I said at first, that I thought maybe he was this way because he knew how dark life could be, and he had gained an appreciation that takes decades for most people.  “But the darkness is all he’s ever known”. The response resonated within me a truth that I had tried to ignore. Carter’s life had never been filled with the light that fills a newborn’s eyes. His eyes, instead, showed pain and hurt. He didn’t fall asleep knowing the safety of a night’s sleep. Instead, he knew nights filled with tears and fear. I always wondered why he held no grudge against me for allowing his pain to continue, for not being able to make him better. But now I realize, he didn’t know he was supposed to feel any differently. I never understood how he could empty the contents of his stomach over and over, bottle after bottle and still give me a smile that melted my soul. Now I do.

 His world is different than ours. It is probably this way for anyone suffering from a disease, syndrome, illness or any other chronic condition. The only difference is that Carter was born this way. He doesn’t know normal like we do. He has nothing to compare it to, and in some ways, I wonder if that makes him one of the lucky few. Someday, we will find a way to control his FPIES. And he will walk out of the dark for the first time in his life, and he will really feel the light that the rest of us take for granted.

Rediscovered

Several weeks ago I was given the wonderful opportunity to go a 4 day cruise with my best friend. I made arrangements with family and some amazing friends to watch the boys while I was gone. We left on Friday for the 4 hour drive to Long Beach. Shortly after we got on board, I saw the most handsome man. We introduced ourselves and he even bought me a drink. As we started talking, I discovered that not only was he handsome, but he was funny and smart too. We talked about all sorts of things, everything really. There was none of that awkwardness you find in so many conversations. The more we talked, the more deeply I fell for this man. He had the most stunning eyes. I slowly began to forget all about FPIES and formula cost, food safety and calorie counting. By the end of the evening, I’d fallen head over heels for this amazing man.

FPIES has changed many things in my life in ways I could never have imagined. I have lost many things because of it, but I never thought I would have lost touch with my husband. When you go through this day after day, week after week, month after month, you enter into survival mode. Anyone who has ever had a newborn understands this phase of life. But with a newborn, it gradually passes, things get better, life moves on. With FPIES, things don’t get better. Instead, it is constantly one hurdle after another, often with barely enough time to catch your breath.

 Carter is my third child, so my husband and I have weathered the newborn storm and come out of it stronger every time. But chronic illness was a different monster entirely. We stumbled through sleepless nights well beyond the one year mark. Many days Eric would come from work, we would have dinner, spend some family time with the boys, put them to bed and then the game of tag would begin. We would tag IN for a 4 hour session of Carter Watch. When our 4 hours was up, we would tag OUT for some sleep.  We lived this way for months. Our life as husband and wife began to fall behind on our list of priorities. The time for long meaningful talks over a glass of wine after the kids went to bed, was replaced with vomit covered laundry and pure exhaustion. When we got married, I knew I was marrying my best friend, and it was this friendship that united us in our one goal of keeping our baby boy healthy and happy.

On that four day cruise, I left home with my best friend, but I came back with my husband. I rediscovered him and us and all the reasons we fell in love all those years ago.  FPIES has taken away so many things, but it has given it’s share of gifts as well. Because of FPIES, I now have a new found respect and admiration for the strength of love and the solidarity of marriage.  And I know that in the next wave that crashes, I won’t be standing here alone. I will never feel alone in this again.

The Black Market

The formula black market. Yep, that’s right. It’s not something that’s talked about much, but it exists for many of us. Our state has a program for low to no income families that will provide formula at no cost. California has not made it mandatory for insurance companies to provide coverage for prescription formula, so of course, they don’t. I should correct that; our insurance company will cover Carter’s formula, but only if he’s tube fed.  So what options does that leave us? We are a single income family with 3 children, one of whom needs $800 a month in formula to survive.  We can’t buy this formula at the store. It has to come from a pharmacy or directly from the company. We also can’t afford to spend nearly 1000 every month for formula. So what have we done? We’ve bought it from the cheapest seller, which is usually off of E-bay. Where do they get it? I don’t know and I never asked.  We got one shipment from a seller on E-bay and all the cans were marked with a “Thank you for shopping at Kroger’s” sticker. I am sure that at $27 a can, this person did not just have 24 extra cans lying around.

I was also told that there are people who qualify for the formula assistance, request these special formulas and then re-sell them. Money straight in their pockets!! I never would have equated formula with illegal drugs, until I drove 3 hours to buy 10 cases of formula out of a woman’s garage. I paid $150 for 10 cases, which is less than the price of one case. And that’s not even the worst of it. The formula was expired. It was only a month expired, but I still fed it to my son. I fed my son expired formula because someone somewhere thinks my son needs to refuse to eat, drop drastically in weight and reach the point where inserting a tube into my child’s nose or directly into his stomach is the only way to keep him alive, before they agree to pay for his life-sustaining formula.

I do not understand the logic of it, or the fight that we are in now to try to get our supplemental insurance to reimburse us for the cost of Carter’s formula. And then I remind myself of how lucky we are to have insurance. We have found ways to keep our little boy thriving. We have pushed through. But this is not a short term battle. Carter will need this formula for years, and we will continue to trade in the formula black market.

New Jersey . . . 9 Doctors later.

New Jersey was certainly a whirlwind. We flew out on Wednesday and came home on Friday. My biggest worry was how Carter would do on the airplane. We had a 45 minute flight and then a 6 hour flight. That’s a long time for anyone to sit in a plane, especially an almost 2 year old. I’m not bragging or anything . . . But he was amazing!! He LOVED being in the airplane. He didn’t throw a single tantrum about being confined to our laps and giggled through take off. He slept wonderfully and truly enjoyed the experience. When we woke up Saturday morning, Carter looked at me and said, “Mommy, Airplane?” I told him that, no, we were not going on an airplane today. He hung his little head and said, “Ohhhh”. I think we may have established a life long love for airplanes. I am so proud of him.

The doctor we saw was fully of experience and education, although she was short on time. They are now scheduling all FPIES appointments in the morning, but ours was made before this change and it was at 1pm. We didn’t get to spend much time talking to her, but she was able to put much of his story together from past cases. It was nice that the things we told her were things she had seen before. She is the first doctor in the 9 that we have seen, who has taken his lack of food digestion seriously. She gave us a sample of Creon, which is a digestive enzyme used in Cystic fibrosis patients. She suspects that Carter is lacking adequate enzymes made by the pancreas to help digest his foods. She also agreed that he is probably getting all of his nutrients from the formula and not from food. We were also told to start a probiotic, which we will begin today. Hopefully this will help balance out his gut and then we may be able to start passing foods again!

I asked about the respiratory reactions that we see in Carter and, although she has seen this in other patients, there is nothing that we can do for it other than treat the symptoms as they present. I have to remind myself that Carter is part of a very small, very rare group of children who are just bringing all of these issues to light in the medical community. They will not have answers yet, but they are acknowledging our struggles and one day, this will help so many other children.  One day there will be an answer for his reactions.

Dr. J and I have already been in touch via e-mail and she was wonderful and thorough in her response. I am glad that we made the trek to get another expert on our side. But not the waiting begins. It will take a month to get the test results back, and hopefully these results will shine some light on the maze and help us find the best path the take to heal Carter.

Pictures of Our Cruise

Our Cruise to Mexcio in Pictures

Our Three Little Wonders Getting Ready for a Night Out on the Cruise!

Getting a haircut on the Crusie! Gotta look handsome for the ladies!

Hello Ladies!

Tyler and Caleb Munching on some SUSHI

Daddy and Carter at Dinner

Mmmmmm, I like Jucie Boxes!

                                                              Strawberries. Thanks Dad!

                                                    Look, I can do it myself! Sweet Potatoes.

What's for dessert? Why, a packet of sugar, of course!

Ooooooo, more sugar!

We had a great time!

Our New Home

Lucile Packard Children’s Hospital, our new home.  It has been almost a year since Carter’s reaction to soy led us into this FPIES maze. He is now 22 months old. We have seen so many doctors and Carter has endured so much on the search for some answers.  Yesterday we had our appointment with Dr. N, who specializes in FPIES. It was our last real hope to find a treating physician to have on Carter’s team.  We left our appointment yesterday with an actual FPIES diagnosis that is in his medical chart!! It has taken so long to find someone who can really help us through this maze, but it has been worth it all!

Our new hero, Dr. N, listened intently as I told Carter’s story yet again. She never once doubted my words; instead she reaffirmed everything I had seen. When I told her about his reactions to meat due to the animal feed, she readily agreed due to the severity of his reactions and even understood the difficulty in finding soy free meats. When I told her about the respiratory distress he gets when exposed to soy, she actually believed me. At every turn, I waited for the “Well that’s very unlikely” or “I’m sure you were seeing something else” or “Those symptoms must be due to something else” but she never uttered a single word of doubt. And for the first time since this whole ordeal began, I actually had a doctor commend me on what a great job I have done to keep Carter healthy, thriving and growing.

It seems all the hard work has paid off. We now have a plan: No new food trails at all (less stress for me, trying to figure out what to try to feed him next) We will do an in hospital food trail in 8 months when Carter is around 30 months old. It will be with a food that he reacted to, but not one of his violent reactions. She said that by 30 months, most kids make a turn and begin handling proteins better. She is a little concerned that this may not be the case for Carter since he has had reactions to very low protein foods such as oranges and honeydew melon.  We are to update her weekly on his overall status and we have been given both her e-mail and cell phone number.  So for now we try to find a way to get him to drink the elemental formula (we got samples too) and we will see her again in a month.

She said that she has 10 FPIES patients and the other hospital she works with, Mount. Sinai, has 18. It is a rare chronic illness, but now I feel like there is someone standing over me, holding a huge flashlight and illuminating this maze so that we can find our way out.

What did I do today?

I found this poem today and knew I had to share it with you! This for all of us who work tirelessly for our children and our families, sometimes with little to show at the end of the day. A big hug especially to all those cloth diapering mommas!!

What Did I Do Today?

                                                                

Today I left some dishes dirty

The bed got made around 3:30

The diapers soaked a little longer

The odor grew a little stronger

The crumbs I spilled the day before

Are staring at me from the floor

The fingerprints there on the wall

                                                   Will likely be there still next fall

The dirty streaks on those windowpanes

Will still be there next time it rains

Shame on you, you sit and say,

Just what did you do all day?

I held a baby till he slept

I held a toddler while he wept

I played a game of hide and seek

I squeezed a toy so it would squeak

I pulled a wagon, sang a song

Taught a child right from wrong

What did I do this whole day through?

Not much that shows , I guess that’s true

Unless you think that what I’ve done

Might be important to someone

With deep blue eyes and soft blonde hair

If that’s true, I’ve done my share.

~Author Unknown