I have 4 things to tell you and all of them are incredulous to me. Are you ready? Seriously, have a seat. (I think I tell you to sit down all the time, don't I? Maybe because I wish I had more time to sit down?) Thinking of all of these four things together makes me feel giddy - as if I've had WAY too much caffeine - so I'm glad to be sitting down to type them. My heart is actually racing. So much to tell, so much to tell...
1. This is not Ginny related but I have the need to tell you that today is our 7th wedding anniversary. Really. Isn't that amazing? Where has the time gone? John and I were together for 4 years before getting married which means, grand total, we've been together 11 years. I was thinking that this year was our 6th anniversary. It's not. SEVEN YEARS? I cannot believe it. I am blessed and lucky and so happy and so in love and thankful for every moment and adventure I get to share with John - and couldn't ask for a better partner in parenting. Wow. Seven years. Makes me think about my Grandparents who were together for 56 years before my Gram passed away. Amazing. Wonderful. And I still haven't ordered a single picture from our wedding. It's on my to do list. I'll get there eventually. We even own and have all the photos on crazy high resolution DVDs. Oops.... where does the time go?
2. We got Ginny's test results back last week and.... drum roll please... The results showed us.... nothing. Absolutely freaking nothing. Of course, Ginny has tested negative (via scratch tests and patch tests) for allergies before (excepting the soy result for the patch test), but nothing else showed up either. Normal. Even her iron was just barely, but still just, within the normal range. NUH-THING. Nothing. Of course, regular allergy tests don't tell you much about FPIES reactions and blood tests are notoriously inaccurate for kids under two, but still... nothing showed up out of the ordinary in any way -and we tested for ALL sorts of stuff. Amazing. Again, blessed, lucky and so happy.
3. So... I have become obsessive and compulsive and exacting to a ridiculous degree about tracking and increasing Ginny's nutritional and caloric intake. Ob-sess-ive. Think excel spreadsheets and a food scale. I'm kinda particular anyhow, so this isn't much of a stretch, however, it seems in this case it's working to my advantage instead of just being something people can make fun of me for :) I have improved my average from 900-ish to over 1050-ish calories each day. Although it doesn't seem like this is a major feat (it's taken a damn lot of work) it seems to have had a somewhat unexpected but incredible, wonderful outcome: Ginny is sleeping through the night. For 5 out of the past 6 nights Ginny has slept for about 10 hours straight. At the very least, before this, Ginny woke up twice a night and, per Wonder Woman and our own feelings on the matter and the fact that G simply wasn't gaining weight, we didn't 'sleep train' G to get her to sleep more consistently. Everything pointed to the conclusion that, since she ate ravenously when she woke up, she needed the calories. But it seems like since we increased the meat (she is now more- readily eating the grass fed beef and seems to LOVE the bison!) and avocado (fat fat fat) and therefore, the calories overall, she's sleeping. SHE'S SLEEPING!! HOORAY! I feel as if a fog has been lifted from my eyes and I'm happy to pop out of bed in the a.m. I no longer day dream about sleeping. I am awake. Don't get me wrong, I still love my coffee in the morning, but I don't ne-e-eed it. I don't get it ready the night before so all I have to do is press 'start' in anticipation of another bleary morning when even making coffee is exhausting. 5 out of the past 6 days she has slept through the night and my world feels different. Of course, like all changes in your kid, this can be bittersweet too, but I'll take it.
4. I've saved the biggest and best for last. This is huge. HUGE. We started our milk trial. Did you just choke? Did you spit up that diet coke you were drinking Stefanie? Go ahead and re-read that. You didn't misunderstand. We started on Saturday and today, Ginny had 3 Tablespoons of milk at lunch. Since she's gotten to drink it through a straw, she is psyched and LOVES it. She points to our glasses of milk on the table when hers is gone and screams demanding more (sorry kiddo, you will have to wait a bit for more). I sleep - and I dream of cheese and ice cream and yogurt. I know that day 3 is early to be so optimistic, but I am. Perhaps our avoidance of all the biggest 'usual' triggers (soy, dairy, all grains, legumes, poultry) is going to pay off. If an FPIES reaction is a T-cell response, and a T-cell takes 18 months to regenerate and 'shed' its memory, and we've avoided major triggers so never created a 'bad' memory to begin with, we don't have to wait 18 months to re-trial foods later because we never failed them in the first place, hence the possibility of outgrowing this sooner. Maybe. I can't pretend to understand the science - hell, doctors are still trying to figure out this puzzle - but I know that this could be a huge victory for us. HUGE.
Four things. Nothing major and yet, so big. It's good to celebrate the little things - and we are. Tomorrow, Chicago is expecting a blizzard with high winds and a possible 20 inches of snow. Somehow, even this isn't raining on my parade. Bring it on. If we can pass milk, we can handle a little snow.
We named her Genevieve. We call her Ginny, G, Little G... and sometimes even Goob. She has FPIES - Food Protein Induced Entercolitis Syndrome. The road to a diagnosis was tough, and we have an even longer road ahead of us as we figure out just what we can safely feed her, and work to keep her growing healthy and strong. I'm blogging to keep family and friends up to date as we learn more everyday - and just maybe our story will help other parents as they journey and struggle with FPIES too.
JAMIE!!! OMG - so awesome to read of the good news ;) And her sleeping, well, that is just so so so awesome!!!! Amazing what a different person you become with uninterrupted sleep! Yay!
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ReplyDeleteNo need to worry, you don't have a creeper on your blog. I left a comment and realized I was logged in as David instead of Stefanie.... Congratulations on All of the above! Milk will be huge! Sleep is priceless! You absolutely must get at least one wedding picture ordered this week. Let that me your anniversary present to each other.
ReplyDeleteMILK!!!!!!! Wow!!! Here's hoping for a big fat pass!!! You guys inspire me!!!
ReplyDeleteYeah!!!! Milk!!! That would open up so many doors!! Go Ginny Go!!
ReplyDeleteAnd double yea for SLEEP!!!!
Hooray for Milk!!! I always related to Ginny because I think she and Jake have some similar reactions. I'm hoping we have milk at some point too! Thanks for the confidence with the avocados!
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