FPIES, the thief.

Let me preface this post by saying that I am very grateful for many things in life.  My girls don't have any fatal diseases, we have a roof over our heads and food in the fridge.  There's also lots of love going around in our home.   I don't want to sound ungrateful for what I have... but I would be lying if I wasn't a bit sad about what I (and my girls, especially Livvy) don't have. 

I'm just going to go ahead and put it out there... FPIES sucks.  It has been a thief of simple pleasures and special times.  

Breastfeeding has always been something I was dedicated to with both of my girls.  I strongly believe in its health benefits and bonding time.  It was because of this belief that I stuck it out with a restricted diet as long as I did with Livvy.  Towards the end, I had dairy, soy, corn, rice, beef, rice and oats out of my diet and she was still not tolerating my milk.  I wanted so badly to continue to nurse and 'do the best for her'.  With so much out of my diet, producing enough milk to 100% nourish a 7 month old was really taking a toll on me.  I was exhausted and weak.  All this and still not complete improvement of her symptoms.  By the time we saw our allergist, I was at the end of my rope.  My whole day (or so it seemed) revolved around what I could eat, when, and how to find it in the stores or cook it.  I had no time for L and just felt like I was failing.  Miserably.  We 'trialed' elemental formulas, and switched to Neocate Infant.  I feel like the switch to formula deserves its own post, but suffice it to say, it was not an easy transition.  I really felt robbed of breastfeeding my daughter, and was very uneasy about feeding her such an engineered diet.  

Then there's the simple pleasure of introducing 'fun' new things to your growing baby to eat.  Yeah, there's nothing pleasurable about holding your breath and waiting to see if your baby starts to projectile vomit or have bloody diarrhea over eating a bit of bananas.  You can forget about cute little cheerios and first bites of ice cream.  

What has me most 'down' these days, though, is Livvy's first birthday coming up.  There won't be any cute cake pictures here.  The only 'safe' foods for her thus far is Neocate formula and baby pears.  Rather impossible to fashion anything that resembles cake from those two things.  I'm fairly handy in the kitchen, but I'm no magician.  It breaks my heart a bit that she won't have a 'normal' birthday party.  I know she doesn't know any different, but I still feel like she's being robbed of something special.  

My 3 year old has a lot of restrictions around the house... just rules to keep her sister safe.  I am a psycho about cleaning up the floor.  I haven't had play doh around in months (could cause a bad reaction if Livvy got any of it), and we haven't been out to eat much because I need to buy some sort of high chair to take with us so Liv doesn't get her hands on food residue.  Not to mention all the times I've told her, "sorry, L, we can't today.   Livvy isn't feeling well and we have to stay home".  

No, I don't wallow in this stuff daily.  Don't get the wrong idea here.  They are things, however, that I think about in passing every so often.  All I can do is the best I can for today, and hope that a tomorrow in the future allows us to do something CRAZY like go get pizza and ice cream as a family