Tuesday, May 17, 2011

One Year Ago Today

One year ago today I went to the grocery store after having put my 6 month old baby to sleep, and came back a short while later to find her grey, cold, unresponsive and vomiting repeatedly and profusely as my husband held her in his arms.

One year ago today, we rushed to the emergency room (for the first time); me holding my child in my arms in the car the whole way chanting, "It's okay. It's okay. You're going to be okay. You can do it. You can make it. We'll be there soon. Keep breathing. You can do it."

One year ago today, we started down a long road filled with questions, fear and uncertainty.

One year ago today our world really changed, even though we didn't know it at the time.

One year ago today my child was still a baby. I now have a running, talking, laughing, very opinionated toddler.

One year ago... and just reliving all of that as I type makes my hands shake, my eyes tear up and my throat tighten.

But today is better. I spend a lot of time on this blog complaining and venting and sharing our struggles and scary moments. But today is better - and I know that tomorrow will be better still. One year has brought us many trials - with doctors, with acceptance, with understanding, with logistics and, of course, with food. One year has brought us a few failures, but many successes as well.

One year has brought us 6 pounds, 6 ounces of weight gain, which now puts our Genevieve into the 25th percentile. We have worked hard for each ounce and truly celebrate this victory!

One year has brought me new found patience, knowledge, an incredible support system and a better appreciation of my husband, our children, our health and the blessings we do have in our lives.

One year has brought Ginny a list of TWENTY FOUR safe foods:

Fruit

1. Pears
2. Apples
3. Blueberries
4. Mango
5. Banana
6. Avocado
7. Strawberries
8. Peaches
9. Mandarin oranges
10. Watermelon
11. Passion Fruit (small amounts as an additive)

Veggies
12. Spinach
13. Carrots (Orange and purple)
14. Broccoli
15. Cucumber
16. Cauliflower

Protein
17. Grass Fed Beef
18. Salmon
19. Eggs (we started this trial on Mother's Day!)

Grains
20. Quinoa
21. Wheat/Spelt
22. Millet

Additional:
23. Milk
24. Cocoa
25. Misc: Brown Sugar, Canola oil, Sunflower Oil, Salt, Lemon juice (in small quantities as an additive), Baking soda, Honey

We had Ginny's 18 month check up (a little late) with Wonder Woman yesterday and she celebrated these milestones with us - the food, the weight, the maintenance of a healthy child amidst so many struggles and, of course, I appreciate her for that. Sometimes, as I look at my child who seems so outwardly healthy these days, I wonder about FPIES. I'm tempted to just feed her and see what happens. I wonder if we're wrong. Wouldn't you? And then I remember how it all went down one year ago today and I mentally run through the list of diagnoses we considered and why each was struck down and I brace myself again to accept this card we've been dealt. Yesterday, when I asked Wonder Woman about trying soy when Ginny turns 2, she actually did the same thing I do; she flipped through Ginny's file, reviewing all the notes from the ER visits, the various tests and results and possible other answers, and replied that, in her opinion, she'd wait until Ginny was three to try rice and soy, and not to push it. She sees no answer besides FPIES. When Ginny has such a good and varied diet, why push it if we don't have to? Why risk the backsliding? I don't love that answer, but I appreciate the consideration and wisdom behind it as well.

So, one year later, that's where we are. We're still scared. We still have scary moments. The anxiety I feel at the beginning of a food trial hasn't lessened, but each food pass is a bigger deal. Each ounce gained is another confirmation that our child is healthy. Each day is enjoyed more and appreciated more - and filled with determination and hope. My friend Bea says, "Life can get so life-y" and I think of this often. It gets life-y and gritty, but even when we're down in the dirt we're doing our best to enjoy making mud pies instead of just wallowing.