Acceptance

“God, grant me the serenity to accept the things I cannot change, Courage to change the things I can, And wisdom to know the difference.”

Acceptance. I struggle with it every day, and just when I seem to have a grasp on the situation, I find myself stumbling around in the darkness once again. Have I truly accepted Carter’s dietary limitations? Have I accepted the fact that this day – to – day is mine, for better or worse, forever? Have I truly learned the difference between what I want and what I need?

Last night we had a great family dinner at our house celebrating the birth of our newest niece.  It was a great time! We moved Carter to the kitchen island to eat so there was no worry about accidental ingestion. We even made him some Carter safe Chex mix: 3 Corn chex, 3 T. safflower oil, ½ t. salt, ½ t. garlic, ½ t. onion powder and a ¼ t. paprika. Carter loved it! He probably ate about a cup of it. He was running around and having a really normal time. I was so happy watching him play like all the other kids.

Shortly after we put him to bed, the coughing started. It was that horrible wet, drowning cough. I went in and gave him his inhaler in hopes that it would settle the cough. When I picked him up out of bed, he couldn’t hold his head up. It was like watching a newborn baby with no neck control. When he did open his eyes, it was only to watch them roll back in his head.  I sat with him in the rocker until the cough stopped and his breathing grew steady and even. I was praying that this wasn’t the start of a reaction, but my mommy instinct knew better. I laid him back down and tiptoed out of his room. All was quite for about 10 minutes until the cough started again, but now it was something more. I ran upstairs to find him laying in his own vomit, too weak to move. His breathing was fast and erratic.  I got him out of bed and his eyes were totally unresponsive. I waved my hand in front of his face and it was like he was seeing right through me.

So he was having a reaction, and there was nothing I could do for him. I cleaned him up, took off his jammies and brought him downstairs. My husband and I watched as his mood went from lethargic and unresponsive to overly hyperactive and obsessive. He was running around the living room at full speed, talking non-stop. His breathing was still really fast and he was shaking all over. We picked him up, put some new jammies on and tried to calm him down. All he could talk about was the cat. It was the same sentence over and over again. The same actions, the same tone of voice. He would pat our arm several times, point to the cat and say “Kitty, kitty”. It began to get a little unnerving. It was like someone had turned his power button all the way up and he had no way of turning it down.

After a while, he started to get a look of panic and fear on his face, “Mommy, what’s happening? Help me.” He switched from a manic up to a sadden low. Now he was crying and scared. All of this lasted for over 3 hours. It was nearing 10:30, so I decided to try and put him back to bed. It was then that I realized that his beloved blankie was covered in throw up. I knew that without it he would never sleep. It was going to be a long night for sure. I laid him down in bed and went to throw the blanket in the washer.  By the time I got the blanket rinsed off and in the washer, he was asleep. I do not know that it was sleep as much as a collapse into unconsciousness. He slept the whole night, not waking until 8am this morning.

I look now, at the recipe for his Chex Mix, and it shakes me. It is unsettling to think that the small amount of spices he had, whichever one it was, caused such a scary reaction. I cannot pinpoint exactly which it was, but figure that it must be from the mix. Nothing else makes sense.  

So today I am learning to accept that there are things that are going to happen to Carter that are out of my control. I am facing the reality that I can’t really be too overly protective about the foods Carter eats. I had hoped those spices would be safe, since he had them before we even knew about FPIES. I cannot say for sure what he reacted to, but it is the only thing that I can make a connection to, but it is one I wish I didn’t know. It is another dead end in this maze, one that reminds me how serious and REAL this illness really is, and that I must accept that I have to do what it best for Carter, always.

Jealousy and the Diaper Bag

It’s a nasty word. No one likes to say it. No one likes to feel it and certainly, no one likes to talk about it. But, all the same, it’s there, green as ever, just waiting for It’s next victim. I figured it was time to talk about it because I know so many of us out there are feeling the same thing. Jealousy.  Envy.  Although we seldom talk about them, these feelings are part of the FPIES package, of any chronic illness. Most of the time, I ignore these feelings when I feel them bubbling up inside of me, but every once in a while I give in, and today is one of those days.

Something set me off today, a small something really. It’s actually very silly, but it’s just shown how different my life is now. I have been shopping for a new diaper bag, a bag that will allow me to take my entire house with me. Ok, not really! But a bag that will let me bring a full day’s worth of formula, 3 meals, snacks, 8 diapers, wipes, diaper cream, sippy cup, juice, inhaler, epi-pen, 2 changes of clothes, burp rag, and hold all of my stuff as well. Oh, I’m sure I’m forgetting some things too! Carter is 20 months old and I carry more for him now than I did when he was 2 months old. By now I should be downsizing to some cute, little functional bag that just held the necessities. Instead, I am trying to convince myself to spend $100 on a diaper bag to hold Carter’s supplies, which are his necessities.

I left the house once, without packing for the day and found myself stranded without enough diapers and no food for him to eat for dinner, simply because our plans ran a little over schedule.  I was reading reviews for the bag I am contemplating and so many of them talked about how this bag was too big and all they needed for their toddler was a zip lock bag to hold the necessities, because of course, as your child gets older, they need fewer things.

Carter is the exact opposite! As he has gotten older, he needs more things. I can’t just swing by the store or order off the menu to provide him with the food he needs. So yes, I am jealous of those moms who get to lighten their load as their little one gets older.  Do I like feeling this way, No. But it is a part of going through this evil disorder.  There are days when I’m sure I have it all together, until I see a child sharing some ice cream with their dad. Will that be Carter some day? It is impossible not to have those moments of envy for those parents who are dealing with “normal” toddler issues.

I know there are people who say that these feelings are wrong or unhealthy, but I must disagree. As parents, we spend all day, every day and sometimes even in our dreams, creating a safe, healthy environment for our children, checking and double checking food labels, vacuuming crumbs and scrubbing tables, sanitizing dishes and clothes, inventing new ways to eat the same food, scrutinizing every hiccup, wince, whine and tear, offering up every ounce of ourselves for FPIES to consume and realizing as we lay in bed at the end of the day, that we have nothing left for ourselves.  

So yes, there are days where I wish we were just dealing with tantrums and tempers, potty training and sharing, colds and clinginess. Times when I wish the terrible two’s were my biggest worries. As I wirte this, I think of my little boy, who is only eating Corn, Strawberries, Blueberries, Raisins, Apples, Sweet Potato and White Potato (Even that is a feat, compared to some of the other FPIES kiddos) And he’s happy!! He’s laughing and giggling and talking, I haven’t heard these sweet noises in over 2 months. His face is pink and chubby. His diapers are normal. He plays by himself. He sleeps all night long. How am I supposed to take that all away from him? If I trail a new food, that’s just what I risk doing. And I can’t just do it for a day or two. His reactions are a build up, so I have to subject him to weeks of a food that may ultimately fail. If it’s a fail, I will lose this little boy and it will take weeks before he comes back.  His language skills are already behind due to his reactions, and I risk pushing him further behind.

I will say this once and for all, Jealous and Envy play a big part in an FPIES parent’s lives, but it will not diminish our strength or courage to keep pushing through. It is just another dead end in this mysterious maze.

Patch Testing, Breathing and the ER

Where to start? So much has happened in the past several weeks. First: Patch testing. There were too many foods on Carter at one time and he reacted to the tape as well as many of the foods. His worst reactions were milk (blistered his skin), soy (leaked out and down to his bottom) barley and wheat. Corn and potato also reacted, which is troublesome since the majority of his diet consists of corn. The doctor dismissed the reactions as redness, inflammation and irritation from prolonged exposure to the food and the tape. But he didn’t view them as reactions. It has since come to my attention, that this doctor didn’t have a firm knowledge of how to do or interpret patch testing. It gave me some useful information, so for that reason I am glad we did it.

The downside of all this is that Carter had a full blown reaction from all the different foods that were used during the patch testing. It pushed him over the threshold and it was more than his body could take; lethargic, diarrhea, irritability, limp, pale, everything but vomiting. During the week after we returned home, his symptoms were not improving. Carter started to run a low grade fever on Friday. This can happen when a little one is reacting and their body is trying to fight off the offending food. He started vomiting the Saturday after we returned home.  The fever continued, but the vomiting decreased to only once or twice a day.  By Monday night it reached 104.8. Tylenol would keep his fever around 102, but once it wore off, we were back up to 104.  I took him to the doctor on Wednesday, as we were not seeing ay improvement.  Carter had double ear infections and a respiratory infection. He had not had fluids in almost 24 hours and was dehydrated. We were given antibiotics and inhalers with the knowledge that I needed to get fluids in him within the next 24 hours.

Carter’s body was so tired from the fever and the constant work of trying to breathe; he had no energy or interest in drinking. At the advice of his pediatrician, and my own burning mommy instinct, I took him to the Children’s hospital emergency room at 1:30 pm on Thursday. We did not make it into the ER until 8 pm. By his point, Carter’s little body was working over time to breathe. His oxygen levels were at 88 and he was showing signs of dehydration, The ER team was amazing. They got his breathing treatments going, an IV for fluids and were very concerned that he had been in the ER waiting room for almost 7 hours. During this 2 week period, Carter had also lost over a pound, which is a lot for his little body.  Carter was not able to keep his oxygen levels up on his own, so he required constant oxygen. This meant that we would be admitted to the hospital. It was almost 3 am before we finally made it into our room. The night staff was amazing and got us as settled as possible, considering Carter was hooked up to oxygen, had an O2 sensor on and an arm completely taken over by an IV. We were released on Saturday, after Carter was able to stay off the oxygen and maintain his levels for 12 hours.  It was a long ordeal, full of ups and downs. We had a wonderful overnight nurse who made the nights bearable.  I was there alone with Carter, so my husband could continue providing our 2 older boys with as normal a life as possible.  On Friday night carter had a very painful reaction to the amoxicillin. This experience was a complete opposite from the day before. The staff forgot to bring any food for Carter and left us on our own to monitor his O2 levels, and place him back on the oxygen if necessary. I am still shocked by all of this . . .

And yes, I believe that the severe reaction to the patch testing weakened Carter's immune system causing a minor illness to irrupt into a severe one. We now have a diagnosis of pre-asthma and reactive airway disease or RAD.I have a feeling that Carter deal with asthma for the rest of his life.

It has been an emotionally, mentally and physically taxing month. I was hoping that January would bring with it hope and health and the promise of some stability. Instead, it has taught me how to bounce back, how to take it as it comes and find the joy in even the smallest of moments. I went for 3 days without seeing my little baby boy smile. His face was full of pain, fear and worry.  Those were the moments that broken my heart, that made me push through when so much of me just wanted to give up.

The strength and hope and help of our friends and family have truly been the one of the guiding forces through all of this. In those moments of total darkness, alone in the hospital room holding a screaming baby; I never once felt truly alone. I knew there were people with me and through their faith, prayers and hope; I found my own.  

Patch Testing: Day 2

Patch testing. We are 30 hours into Carter’s patch testing. He will have them removed tomorrow at noon. I have been so apprehensive about how the testing will affect him, but as usual, he has surprised me at every turn. He was in good spirits for the entire drive to Sacramento. He cried when the nurse put the patches on, but that was to be expected.  He was such a happy boy all afternoon yesterday.

 At 4:15, he started to get sleepy. He was up early that morning and didn’t get a long nap, but it was too late to put him down for one. By 5:15, he could barely keep his eyes open. He would walk over to a toy, stop to play with it, and end up curled up on the floor with his blankie. It was atypical behavior for him, but I just wrote it off as a lack of overall sleep and a busy day. Carter was in bed by 6 and I headed to bed at 9, preparing myself for the real possibility of a long night ahead. Once again, another surprise! Carter slept from 6 pm to 8 am the next morning, 14 hours!!! He is in a new place sleeping in his pack and play. This is just unheard of for him. I tried to write it off as a need for sleep, but it made me uneasy. The feeling of unease escalated through out the morning. By 10 am, he was yawning and looking tired. He took two half hour naps today in the car and is now in bed. It is 6:30. His mood has changed along with his tiredness. I am worried that this is a side effect of the patch testing, a sign of reaction through the skin. I changed his diaper at 5 tonight and his diaper area was covered in little red bumps. There were also some on his stomach. He also has the RRD (red ring of doom) on his bottom. These are all signs of a reaction, but he hasn’t has anything new. This leads me to only one conclusion; he is reacting through his skin.

The very thought of this frightens me. What will the skin look like, once the patches are removed? He is in obvious discomfort whenever the patches are touched. Another FPIES mom said to push on the patch. If he winces then it’s likely there is a reaction to that food. She was advised to pull that patch off to give some relief. I tried this, but he winced at every patch I pressed. I feel so horrible watching him in discomfort, but I pray that at the end of this, there will be some solid guidance for us and a plan to go forward and move ahead with some new food trials.  I was disheartened to learn that the doctor was unsure of the brand of baby food used on the beef and chicken patches. They said it might be Gerber or a mixture of more than one baby food.  Gerber isn’t considered a safe product line because of the great risk for cross contamination. It makes me worry about the rest of the sources that were used for Carter’s patch testing.  How accurate will the results really be for us? I brought in Turkey, Mango, Prune and Squash; so I know that those were from safe sources.

Noon tomorrow cannot come soon enough. I am anxious to get the patches off his little back and relieve him from his discomfort. I hope that he sleeps tonight. I hope that I sleep tonight.  I gave him some Tylenol before bed and he seems to be sleeping peacefully. Now I must try to relax and stay positive for what tomorrow will bring. Maybe it will help us find a way out of this maze.           

No Surprise

Sometimes you hear the right song at the right time, and something just clicks and falls into place. I’ve always linked events in my life to songs. There is a power in hearing someone sing words that reflect your emotions and your experiences. I now have an FPIES song. I sing it to Carter and we dance around the house together. I feel like I’m singing directly to FPIES and it helps release some of the hold it has on my life. The song is “No Surprise” by Daughtry. The parts in ( ) are my thoughts and how I relate this to our current situation.     

I've practiced this for hours, gone round and round
And now I think that I've got it all down (countless hours of FPIES research) And as I say it louder I love how it sounds
Cause I'm not taking the easy way out (not listening to the first Dr who said he was fine)
Not wrapping this in ribbons (FPIES isn’t pretty, and I’m going pretend it is)
Shouldn't have to give a reason why...
It's NO SURPRISE I won't be here tomorrow (Someday this will be gone)
I can't believe that I stayed till today (Not going to let it hold me or Carter down anymore)
Yeah you and I will be a tough act to follow (We do make a darn good FPIES team)
But I know in time we'll find this was NO SURPRISE
It came out like a river once I let it out
When I thought that I wouldn't know how (Didn’t think I would be able to handle FPIES)
Held onto it forever just pushing it down
Felt so good to let go of it now (Blogging)
Not wrapping this in ribbons
Shouldn't have to give a reason why
It's NO SURPRISE I won't be here tomorrow
I can't believe that I stayed till today
There's nothing here in this heart left to borrow (Not giving away anymore of myself)
There's nothing here in this soul left to save (Carter and I have saved each other)
Don't be surprised when we hate this tomorrow (Who doesn’t hate what this has done?)
God know we tried to find an easier way
Yeah you and I will be a tough act to follow
But I know in time we'll find this was NO SURPRISE
Our favorite place we used to go (All the dinners out that rarely happen anymore)
The warm embrace that no one knows (those countless late night snuggles)
The loving look that's left your eyes (the glazed empty look his eyes get during a reaction)
That's why this comes as no, as NO SURPRISE (that we have fought this hard)
If I could see the future and how this plays out
I bet it's better than where we are now
But after going through this, it's easier to see the reason why (I know it will get better, and after all we have done, it has to)
It's NO SURPRISE I won't be here tomorrow
I can't believe that I stayed till today
Yeah you and I will be a tough act to follow
But I know in time we'll find this was NO SURPRISE
The kiss goodnight, it comes with me (FPIES won’t take this)
Both wrong and right, our memories (The guilt of missed triggers and reactions)
The whispering before we sleep, just one more thing that you can't keep (FPIES won’t take away those moments)
Our favorite place we used to go
The warm embrace that no one knows
The loving look that's left your eyes
But I know in time we'll find this was NO SURPRISE
I just thought I’d share. I’m sure we all have sons that lift us up and make us cry at the same time and this is one of those for me. Carter will probably grow up singing it!

Broken

So much has happened lately, but with the holidays coming, I told myself I needed to take an FPIES break. I have since learned that it is impossible to take an FPIES break.

Eggs and chicken have been taken out of Carter’s diet and he is doing much better. His chronic runny nose and cough are gone.  He is sleeping through the night again and is all around, a much happier boy.  He has confirmed for us that he was reacting to the soy fed to the chickens. I will begin my quest for grass fed chicken and eggs in the New Year.  This also makes me wonder about all other meats. I will have to find trusted ranchers or wild game, but once again, that will all be addressed in the New Year. And then there’s cow’s milk . . . Is Carter reacting to the cow’s milk proteins or the soy fed to the cows? But that will all be saved for another blog, after some more research.

We will also be traveling to Sacramento to have allergy patch testing done on Carter. We will be there for a week while the test is conducted and the results are interrupted. Patch testing involves taking the food and applying it directly to the skin for 48 hours. The patches are removed and the reaction to the skin is noted. The area is then read again, 48 hours later and a final result is given. They will be placing approximately 15 patches across Carter’s back. We are grateful to some wonderful family and friends who are opening their homes to Carter and me so that we do not have to travel back and forth. I am hopeful that the patch testing will provide a guide as we introduce new foods.

I was reading something the other day written by another FPIES mom, who described herself as Broken. In truth, FPIES has broken us all, over and over again. Every time a reaction happens, every time another product is found to be unsafe, I feel like I’ve been broken again. There are no easy answers. Discovering that almost all soaps were unsafe for Carter, was saddening, but bearable. Discovering that many of the toddler friendly Crayola products contain soy and are therefore unsafe for Carter was devastating. Both the Crayola washable markers and many of the Color Wonder products contain soy. It is in these moments where I feel that I will never be able to create a Carter safe environment, even in my own home.  It is my responsibility to provide the most normal life possible for Carter, to make sure he has as many normal toddler moments as possible. In an effort to do this I made Carter some home made play dough. We got out some cookie cutters and were so excited to see him experiencing a normal toddler moment. Unfortunately, he wasn’t as excited about it. He looked at and watched us play with it, but didn’t play himself. I’m just not sure he knew what to do with it. We’ll have to try again, this time getting his brothers involved. Hopefully watching them play with it will encourage him to play too.

I worry about his language development too. He seems to be behind in his speech. There are maybe only 3 to 5 words that are understandable, the rest of his speech is just inflection, sometimes using the first syllable of a word, but never the whole word. It is an issue I plan to address with his pediatrician at his next appointment.

So I wonder how any parent of a chronically ill child, especially moms who end up providing most of the primary care, could not feel broken. But it is in those moments where we have fallen to our knees that we find the strength to build ourselves back up, maybe just a little stronger than before. It is this extra strength that propels us through the next fight, to that next moment where we have given all that we are, where we once again are broken. And it all begins again.

Formula Flavors

Carter is on Vital Jr. a semi-elemental formula much like Alimentum, but formulated for toddlers. He drinks the vanilla flavor with no problems, loves it actually. The last order of formula we bought was a mix of unflavored and vanilla. I have tried the unflavored in the past, but after getting a taste for the vanilla, there’s no way he’d drink it plain. So I got some of the Flavor Straws, thanks to some wonderful mommies on here, and we tried the strawberry.  I got him a special cup and made a HUGE deal about using a new cup with a straw to drink his special milk. He was so excited!! He clapped and smiled and even laughed! I gave him the cup and he took a couple sips . . . but he made a sour face. So I kept encouraging him and I think he drank an ounce total. He then gave up on drinking and just wanted to play with the cup. He got upset when I took it away, but really didn’t drink anymore. So I thought it was time to get creative!

I cut open the straw and dumped the flavor beads directly into the formula. I shook it and gave it back to Carter in a sippy cup. He took a big drink, and then spit it all back out, making the most sour face!! I looked and the beads hadn’t dissolved at all. Instead, they all sank and stuck to the bottom of the cup.

The next two diapers he had were very acidic smelling and burned his bottom. Was it the straws? He only had one and didn’t even have much milk through them, so I’m thinking it was something else. But that’s just another part of the guessing game.

I have two other straw flavors; banana and cookies and cream. I don’t mind experimenting with the flavor straws or even other flavoring methods for the formula, but I am worried that he will go on a formula strike again. The last time we tried to give him an unflavored formula, Peptamin Jr, Carter refused to drink it and went 72 hours without taking any formula. The idea that a child will eat when they are hungry enough doesn’t apply to Carter. Although I do wonder if he refused to drink it after taking in the first ounce, because there was something in that formula that didn’t agree with his system. Yet another guess in our guessing game.

 And then there’s the issue of the cases of unflavored formula I have already. I need to find a way to get him to drink them. I need to start now since our supply is almost at 50 % vanilla and 50% unflavored. I have tried mixing the two formulas together. I did a 50/50 mix, but he wouldn’t drink it. I did a 20/80mix, but he still wouldn’t drink it.

I have searched the internet and asked so many people about the various ways to flavor formula. I know some people use Crystal Light, but that just sounds scary. I have heard of other people who use vanilla extract with great success.  I know, you’re thinking, “Wow, vanilla extract, that would be easy!” Did I mention that it’s $24 for 8 ounces? So we made a family trip to Whole Foods today to buy some of this special vanilla. We bought a 2 ounce bottle for $7. One capful or teaspoon per 8 ounce serving, that’s what we are going to try first. I am hoping it will be just what we need to get Carter to drink his unflavored formula. We will try tomorrow and hopefully having Daddy here will make Carter more willing to try yet another of Mommy’s concoctions.

Carter may be on this formula for years, so I want it to be something that tastes good to him. His formula also comes in Strawberry and Chocolate, but these flavors are harder to find, at least at a reasonable price. And we are still at the beginning of our battle with gettingthe insurance company to cover it.

There will always be something. Some obstacle to overcome, some new challenge to face. It is all part of the FPIES maze.