Wednesday, July 20, 2011

The Thank Yous

So sorry for the lack of new recipes! Our kitchen is STILL torn to pieces (but we are making progress!) and. . .a little foreshadowing here. . .you may all be seeing our kitchen in all of its glory before too long with moving pictures. . .

So in lieu of a recipe tonight, I just wanted to say thank you. Thank you for all of our supporters who have been right beside us in the kitchen all these months! Thank you for all of you for giving us inspiration and strength to try new things, new ways of doing old things and new avenues for doing them.

Thank you most of all for inspiring each other and for reaching out to all parents, new and "veteran." I look on the FPIES boards and groups and I see so many of you connecting and sharing. I love that when a new parent calls out for help, all of you are THERE for them because we have all been in that place, that scary, dark place, waiting for someone to respond to us, to help us find answers when doctors tell us there are none.  I feel so honored to be a part of this group, this COMMUNITY, and I am so touched that so many of you, fighting so hard for your own children, will think nothing of reaching out and offering a hand to help fight for someone else's baby, too. We might not be able to change the diagnosis, but our community is giving a face, a name and an incredible support network to our children and families. Thank you for all that you have done and for all that you continue to do. This community never ceases to amaze me.

Friday, July 1, 2011

Knitting and New Moms (this one's for you!)

It may shock you (or if you know me well, it might not!) that I spent most of my preteen, teen and young adult years on the stage. It was home to me! I loved taking on a new character, I loved creating, I loved sharing a new world with an audience.

During my Sophmore year of college, I played Agnes in Dancing at Lughnasa. My character knitted, like, ridiculously well. I, at 19, did not. So with the other "sisters," the knitting lessons began. Our wonderful instructor, Debbie, told us that although it might be hard to learn at first (we had to learn how to knit cuffs for gloves using the old tiny needles), it would become second nature to us and we might even find ourselves reaching for the knitting during finals to relax. Well. . . I loved Debbie, but I thought she was a tad crazy for saying this! But I took my knitting back to the dorm room and set out to become a more believable Agnes. It did not take long for the knitting needles to sail across the room, narrowly missing my good friend's left eye (oops). Every night, I made myself knit for a minimum of 2 hours. I cursed, I threw needles, I pouted (hehe), but every night, there I sat. In rehearsals, I got better at knitting while playing my role (talk about multitasking!!) but every night, I would inevitably drop stitches, tangle my needles, and eventually have to rip it all out and start over. Opening night finally came and at the end of the show, I looked down at my knitting basket in surprise. I had made my first flawless cuff, and I hadn't even been paying attention! It just happened, it just worked.

When I started cooking for B, with our short list of ingredients (masa, arrowroot, pears, and bananas), I cursed, I threw cookbooks (before I exiled them to the living room altogether), I hurled pans at the wall. I scraped lots of mushy looking science experiments from pans, soaked a ton of dishes and went through a lot of dish soap. But in a few weeks, recipes started to become edible. And in a month or two, recipes became perfected. In another few months, I expanded recipes, knew all of the instructions by heart, and knew how to successfully troubleshoot (most of the time!).

Now a year and a half later, our ingredient list has expanded, but more significantly so has our repertoire. The occasional pan does become airborne here or there, but the kitchen has become a happier place. I still wish B didn't have FPIES, I still yearn for easier ingredients to manipulate into recipes, and I certainly still crave the ability to cook only ONE meal for all family members, but all in all, it has become our new norm. And just as I did eventually find COMFORT in knitting (Debbie was right!), I now find comfort and peace in baking in our FPIES test kitchen. I love the joy of helping other parents figure out how to make their own FPIES kitchen "just work"!

I have noticed many new moms popping up in the Facebook and Baby Center groups. In a way, this makes me sad because this means another set of babies is having to go through what B experiences, but in a way, I am glad because it means there is more awareness and parents are finding each other. So to all of you new mamas (and daddies!) as you start your journey in FPIES, I know it feels daunting. I know it feels overwhelming and to be honest, brutally unfair at times. There are parts of this journey that don't get easier over time. But you will find your new norm, you will find your new day-to-day living, and you will find your own peace and comfort. It might be in a place you would never expect. Most importantly, we have to continue to find one another. When we do reach out, when we do connect, then it does get easier. Please open yourselves to connecting with others and open yourselves to finding your comfort. The door to Baby B and my kitchen is always open.

Today She Asked for a Snack

Last Friday. . .

My B stopped me in my tracks today, asking for a snack. "I'm hungry, mama." This may not seem all that mind-blowing to some, but you have to understand, B has not ASKED to eat (other than asking to nurse when she gets a boo-boo--- I vote that doesn't count! hehe) in I don't know how long. When we had the scope done and the nurses were explaining the prep to me over the phone, they were saying how miserable B would be from being hungry due to fasting. I laughed to myself-- this kid would go for days without eating if she had it her way. A little over a week ago, we stopped the Zantac. Last Wednesday night, she ate more for dinner than she will typically eat total from every dinner in a week. Her typical amount for the week, eaten in one meal (which was a slightly larger than normal toddler meal, but a lot for her). And she still had room for ice cream! But here is the kicker-- normally, we have to practically beg her to even accept the spoon that we are offering, forget her trying to feed herself, though she knows how. But Wednesday and every meal since, she has been feeding herself, without a need for more than a couple of prompts during the meal.

So it could be a growth spurt, it could be something else. But I think if we are seeing this still in a week from now, it was the Zantac. I am pleasantly surprised. I knew the Zantac wasn't really doing much for her but I also knew she wasn't reacting to it, so we continued with it, hoping that it would lessen her reactions. But now that I see my girl without it, I am sincerely blown away. I never thought I would see B want to eat, to be interested in eating, to ENJOY her meal.

Today. . . .
So fast forward to today. She's not pigging out, but her eating is still much much better than it has been in months. Beans were a fail and we saw a decline in her appetite with that, but it is picking up steam again. I have nothing more to say other than I am so happy that even though, yes, she still has her picky toddler moments, food is once more interesting. And maybe there will be some positive new recipe results come soon!