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February 5, 2012

 

So last night I was thinking about how I am not going to be able to make a cake for Jaiden's first birthday, and it made me feel a little sad. But then I started to reflect on my journey with this child over the last year, and one particular memory stuck out in my head.

Now usually when I start to think about all the stuff that happened with Jaiden, my head tends to go to the ambulance rides, the many needle pokes to get an IV, the blood transfusion, the scopes, my inability to nurse him, or even the moment I got to fall asleep with him in my arms when it was finally all over - my first moment of peace with him in weeks. But that is not where my head went last night. My head went to a moment I have not thought about once since it all happened.

Last night I could see myself sitting in the ER waiting room. It was the FIRST time we were in ER. Both my husband and I had debated about bringing him because we were told over the phone that he was probably dehydrated. During both my pregnancies I became dehydrated, so we knew the drill....4 hours IV fluids then go home.  No big deal.  So we debated if we wanted to put him through that stress when we could just try to really push fluids at home. But there was the blood in his diaper.....that was a concern we just couldn't ignore and decided to take him to ER.

So here I am in the ER just about 4 days after giving birth. I remember carrying him in by myself and struggling with that as my husband parked the car. I filled out the paper work and sat down. Jaiden was asleep in the seat and sitting across from me was an elderly couple. The last thing I wanted to do was to have small talk, yet the elderly lady came over to see the baby.  I mean, I get it, who can resist peaking at such a new baby?

She asked if we were here for the baby. And I explained, as positively as I could, that he was just a little dehydrated and he was going to be just fine.  I'm not sure if I was trying to convince her or myself of that.  My motherly instinct knew at that point that something wasn't right, and that it was more than just dehydration. It turns out that I was right.

She went and sat back down when my husband came in, and him and I sat in silence and watched are 4 day old baby sleep in his car seat.

Why did this memory so vividly pop into my head last night? I think because that was the final moment before it all began.  The final moment before all the chaos and worry began.  The last moment before things like blood count, hemoglobin, amino acid formula, food trials, and Fpies became part of my regular vocabulary. The final moment before my world, and his, would be flipped upside down and we would have to work every day to find what our new normal would be.

So now, almost a year later from that time, I think we are finally getting a hang of this thing called Fpies.  We are finding ways to make things easier for Jaiden and for the family as a whole. So what that he doesn't get a cake for his birthday? He is here, he is happy, he is healthy! My life is better every day that he is in it! He has given me a strength I never knew I had and he has taught me more about life in the last 10 months then I have learned in the last 30 years! Plus, there is no greater gift then hearing him laugh, cake or no cake!

 

 

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LOVE this, Beth!!!!  You have such a beautiful way of writing, of putting me right in the moment, right there with you and your family in the ER.

 

I gave up on the cake idea a couple of months before Matthew turned one...it was such a stress point, and there were no foods we were allowed to trial that would make a cake possible, so I just gave up on it.

 

And once I did everything seemed so much easier.  I focused on finding something he could have that was sweet (we did a coconut sorbet) and never looked back.  The look in his eyes when he saw the lit candle, and the wonder at everyone in the room singing for him - those were the important things, and were no less amazing without a cake

Thanks Amanda!  I have thought about starting a blog.....but when I write I wrtite for me, but I am okay posting some things.  A few months backwears of ears hearing "so just don't give him milk". Like it is that simple.  So I wrote anawareness thing for my friends and family.  I will post that on here later for you to read.

 

Yup, I'm over the cake.  I'm going to try strawberries with him on Friday anfief they are a pass I'm going to come up with something using strawberries, I am sure he will love anything I make.

Thank you all so much for the compliments.  I attached something I wrote for my family and friends when Jaiden was 7 months old.  I wrote it because we were just starting solids with Jaiden, and that was a very confusing and stressful time (as we were starting to figure out he was allergic to more than just milk).  The night I wrote this, I felt like all I had been doing for days was cooking for him.  At dinner that night, I had one puree left that was safe for him to eat, and I dropped it on the floor. I just sat down and cried!  "What am I supposed to feed this child".  It wasn't a good time for me....however, that is when I got my butt in gear and started to freeze and plan ahead.  So this is what I wrote to help my family and friends understand why I sat on the floor crying that night.

 

Amanda - I would love the sorbet recipe...no hurry!

 

My son has a severe milk/soy protein allergy.  This is not the same as being lactose intolerant.  This is not the same as colic.  This is a severe allergy that has almost taken the life of my child twice. This allergy is time consuming, life consuming, overwhelming and frustrating.  People seem to think it is as easy as just not giving him milk or soy, but it is not. 

 

It is label reading. It is having to shop at 4 different stores to get all of his safe foods.  It is frustration of not finding any foods he can eat because soy is in everything.   It is the depression of grocery shopping, and returning home yet again empty handed for this child. 

 

It is calling and being on hold with food companies for what seems like hours to be 100% certain that the vitamin E or natural flavoring is not soy based, because soy fat ingredients do not require labeling. It is constant cross contamination research, that is seeing what foods are run on the same line as foods made with dairy and soy, because I will not let a drop enter his body.

 

It is constant research, constant planning, and constant thought about what foods to try next and in what order.  It is the constant  facts about food constantly running through my head.   

 

It is constant recipe search, constant trying to find new ideas for the same foods search, and constant recipe experimentation. It is the constant meal planning. It is food journaling.

 

It is frequent trips to the store, since everything needs to be made from scratch.  It is the steaming, blending, storing, cleaning, repeat, multiple times a day.  It is the not having the luxury to do "fast food" ever, even on those days where you just need a break from cooking.

 

 It is trying to explain to Jo why she can't share her cookie with her brother.  It is the look on his face when he wants to try just a bite of what you are eating.

 

It is expensive! All his foods need to be organic, natural, and whole.  It is having to give up the luxuries that are my sanity in order to pay for hyper allergenic formula, because each can cost $39 and one can lasts about 48 hours.  All though expenses are the smallest of the issues because his health is more important than anything money can buy!

 

It is the constant wonder if a behavior is due to an allergy or not.  He is fussy, is he tired or reacting? He is not eating, is he full or is he reacting? He had 3 dirty diapers today, just an off day, or is he reacting?  He is sleeping a lot today, is he just tired, or is he reacting? He seems uncomfortable, is it his teeth or is it his stomach? It is the fact that your heart always goes to the allergy, and your head has to try to talk your heart out of it.

 

 It is the poop checking.  Every day for 7 months, poop check.

 

It is the not having anything in common with your friends anymore, because you eat, sleep, and breath this allergy.  It is talking to people on the internet that you have never met before more than talking to your friends, because they are the people that truly get what you are going through.

 

It is the prevention and worry of cross contamination in your own home. It is the little decisions about food that have turned into monstrous ones.  It is the selfishness of wanting to introduce more foods then you should for convenience, and then the guilt of even thinking of that.  It is the constant thoughts of food running through your head that have taken all the joy and fun out of introducing them to your child.

 

 And the worst of the all, the constant anxiety that you are going to put your baby through hell again if you don't do everything right.  It is the constant fear that overwhelms you every time you put something new into your child's mouth. 

This is awesome, Beth!  Here's the recipe from my kitchen aid ice cream maker's manual - it's actually for a raspberry sorbet, but you should be able to mod it easily, so I just replaced the word raspberry with strawberry below  It calls for an ice cream maker...if you don't have one I can pull the "ziplock baggie ice cream lab" out from my Science teacher days...Good Luck!

 

Strawberry Sorbet

 

6 cups Strawberries (cored and stems removed)

1/4 cup plus 2 Tbsp Water

1 1/4 cup Simple Syrup (recipe below)

 

Combine strawberries and water in food processor and process until very smooth.  

 

Pour through fine mesh strainer, lightly pressing on solids to extract as much liquid as possible w/o forcing through solids. (Discard solids)

 

Pour liquid into airtight container and refrigerate until thoroughly chilled (at least 8 hours).

 

Combine chilled strawberry juice and chilled simple syrup, then pour into an ice cream maker that's already spinning (I use the ice cream attachment on my kitchen aid).  Let ice cream maker stir until it reaches the desired consistency (this only takes 7-12 minutes in my kitchen aid attachment, but the bowl itself is frozen).

 

Immediately transfer sorbet into an airtight container and freeze for a minimum of 2 hours before serving.

 

Simple Syrup

 

2 cups Water

2 cups Sugar

 

Combine water and sugar in saucepan and bring to a boil over medium-high heat.  Cook and stir until sugar dissolves completely, approximately 10 minutes.  Transfer to an ice bath (a tall bowl sitting inside a shorter bowl that's filled with ice water), stirring until well chilled.  Refrigerate until ready for use.

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