Saturday, March 26, 2011

Going Kosher

We're going Kosher. That's right. Kosher. And not just for Passover either. Hooray for Passover! Hooray for Kosher Foods!

Okay, so we're not all really going Kosher, but I had some pretty big breakthroughs at the grocery store today with Kosher foods and I'm not yet over my excitement. To be honest, I was so excited (am still so excited) that I think it's irritating John. Sorry honey :)

How did it all happen you ask? OF COURSE I'm going to tell you! Don't I ramble on about everything? Yes, I do. I know. It's okay. Roll your eyes. Done now?

Wednesday, March 23, 2011

How You Can Help

I've been putting this off for awhile but it's time. I sat down tonight and caught up on so many other FPIES blogs; the stories of BABIES really struggling through each day and the parents who love them. They are all suffering. I cried too many times. I've been putting this off for awhile, but it's time. So here it is.

I'm not very good at asking for help. So many people have said, "Let me know what I can do to help" but with FPIES, there hasn't really been a way for people to help us. Until now. So, here it is, my plea for help.

When Ginny was 6 months old and had her first FPIES reaction, we rushed to the ER of a major children's hospital in an absolute panic. We live in the third largest city in the United States. No one there knew about FPIES. Since then, we have seen loads of other doctors at that same hospital and many others searching for answers, searching for a diagnosis, searching for understanding to help our child. It has been a long road. At this time, little is understood about FPIES and, in turn, few doctors know about FPIES. I sincerely hope that this will soon change. We are incredibly lucky that Ginny has made so much progress and is tolerating so many different foods. Unfortunately, we know too many kids who rely on elemental formulas, nasal feeding tubes and G tubes for nutrition. We know too many moms whose hearts are breaking as they simply work to feed their children.

The Children's Hospital of Philadelphia (CHOP) is the leading center for FPIES research. When you go online, it's their articles you most often find. When FPIES kids get really ill, that's where their parents take them. This is THE place to find a team approach, with GIs, Allergists and Nutritionists working together; healing children suffering from multiple reactions, preparing plans for parents moving forward, researching to gain understanding of this nasty monster and spreading the word so that more doctors and parents recognize it and can do the same. What Wonder Woman (our Pediatrican) knows she learned from CHOP. What Boy Wonder (our Allergist) knows, he learned from CHOP. What many of the FPIES moms know, they learned from CHOP (and each other of course!). I truly hope we never have to go there, but simply knowing it is there is like having an ace in the hole. Should Ginny ever get that bad... there's always CHOP.

Recently, an FPIES mom we have come to 'know' (via our invaluable/absolutely essential online FPIES community) has paired up with CHOP to create the FPIES United Family Fund. It is the goal of the fund to raise $300,000 to be used for the following:
  • Research including a sample of 500 FPIES patients
  • Education for medical professionals
  • The establishment of an ICD (International Statistical Classifications of Diseases) code for FPIES (which could lead to both better awareness and treatment)
  • Grant writing for funds to further this research
So how can you help? You can donate to the FPIES United Family Fund. Donating to this fund helps Ginny, helps us, helps our friends who suffer from this and will help FPIES kids for years to come. As I said, I don't like to ask for help - and I don't like to ask for money either. I have never asked before, but I'm asking now. You can donate online here.

We appreciate the love and support we have received from family, friends and the FPIES community - and we thank you on behalf of Ginny, and all the FPIES kiddos for any contribution you're able to make.

Thursday, March 10, 2011

What Did I Do?

What did I do?
On Tuesday, I turned my head for a moment and Ginny got one piece of another kid's snack into her mouth. She didn't even get to bite it or chew it or swallow it before I yanked it out, rinsed out her mouth and wiped off her tongue... and then held my breath for the next few hours.

What did I do?
On Wednesday I gave Ginny vanilla yogurt. The only ingredient different from the plain yogurt she's been eating, without issue, is vanilla.

What did I do?
On Wednesday I baked and fed to Ginny whole wheat flour, banana, blueberry muffins, to which I also added vanilla.

What did I do?
On Thursday, without any forethought or intentions of starting an official 'trial' I fed Genevieve freeze dried pineapple. I thought, "What the heck? She's been brilliant! I doubt she's really going to react to any fruits at this point in time."

What did Ginny do?
Last night she woke up at 1 a.m., screaming. I nursed her. We held her and changed her diaper and soothed her and she continued to scream until just after 3 a.m. It's not unusual for Ginny to still wake up once a night to nurse, it's just unusual for her to be wide awake, standing up in her crib, screaming and all but inconsolable for 2 hours.

What won't I do?
I won't give her pineapple again, for a very long time. I will make this week an official trial of vanilla. I will return to my paranoid, eagle eye way of living, even if people do think I'm a little crazy, so I can avoid pain for Genevieve and anxiety for myself. Wheat is safe. Fifteen other foods are too. It's just the thousands of other foods out there that might be dangerous that are keeping me up at night.

Thursday, March 3, 2011

Wheat Day 3

Wheat is... so far, so good. Ginny seems to love the noodles and has had no reaction thus far. No reaction, but about 1.5-2 hours after eating the noodles she gets a crazy phlegm-y cough that sounds like a pre-puking cough and makes my heart skip a few beats and often has me running down to her, phone in hand, ready to call John or 911 or both... and, thus far, all I've found is a coughing, but still sleeping, kiddo. So we continue to wait and feed her noodles.

That's not a very exciting update, is it? Not so much. So.... just to entertain you, I'll share other Ginny news. Besides waiting to find out if wheat is safe, we've been waiting and waiting for her to talk more. She was great with "Mmmm Hmm!" for yes and "Uh uh" for no. She said "Hi" and waved to everyone she passed (even people in cars we pass on the street). She could happily screech for 'Melmo' (Elmo) and regularly picked up tiny bits of crud off the floor, handed them to us and said something very close to, "Here you go!" She pointed to things and demanded things without words but beyond that, not so much. Tuesday, however, was a pretty incredible day. On Tuesday Ginny, apparently, decided to talk. A lot. All in one day she said: Ellie, pleeeeeeeeeease (mimicking Ellie as she begged for more snacks), Eyes (pointing them out on her dolly), Hi Daddy (on the PHONE!), Bye-bye (to everyone and everything and doors she closed and to her lunch as I took away the leftover bits and and and), belly button (as she begged me to tickle it), cheeeese (in celebration of getting some with her lunch), and go-go-go (repeating what I think I say to both girls a million times a day when they're moving at daddy's pace). And if that wasn't enough, she then decided to learn to use the door handle.

It seems that, in life, we spend a lot of time waiting and then, in a moment's notice, all you've been waiting for is history on you're on to the next anticipated event and reminiscing about how things used to be. I know I've said it before and every parent must say it - and people warn you of it even as you hold your days old newborn in your arms, but wow.... time really flies by. Kids grow up so fast. I think tomorrow Ellie will be getting her drivers license and Ginny will be heading out on her first date. I better charge up my camera to record all these moments in a concrete way because, it my mind, it's just a blur.

Tuesday, March 1, 2011

Wheat, Day 1

I meant to give Ginny a whole wheat/wheat only noodle with her breakfast. I meant to. Really. But I just couldn't. I was a wreck. It was ridiculous. I felt sweaty and nauseous and no, I'm not pregnant. I just couldn't do it, so I waited until lunchtime and gave Ginny two noodles. She ate them so fast that I actually spent time looking around in her chair and on the floor, thinking she must have dumped them out somewhere. She didn't. She ate them. Right now, she's napping. Right now, she's fine. I'm hoping that she stays that way. I don't know why, but this trial is making me a wreck and, so far, she's only had 2 noodles on day one.

Maybe it's all the drama of this past weekend.... it was just plain icky. Starting Thursday Ginny was passing some really suspicious poop. (I was on a poop-talk hiatus for so long and it seems to have come back with a vengeance, hasn't it? Is this my third post in a row where I've talked about poop?!) It was black and resembled potting soil. The last time I saw poop like this it was passed by the late, great Buddy dog who, one week later, died due to massive, unexplainable, internal bleeding. Yeah, of course I freaked out when I saw this in Ginny's diaper. (Black poop usually means blood from somewhere in the upper GI that has oxidized and turned black as it passed through.) Who swooped in to save the day? Wonder Woman, of course (i.e. our pediatrician for those of you newcomers). She will never cease to amaze me with her willingness to help us. She calmed us down and came in to her (closed) office from the hospital at 8:00 a.m. on Saturday morning to do a hemoccult test for us - actually, LOTS of hemoccult tests, just to be sure. Apparently, since the stool wasn't 'fresh' we could have false negatives, but since all poop returned to normal by Sunday night, we're sleeping a bit easier. Weird poop makes me worry.

John's soon-to-be-one-hundred-and-one year old Grandma also made me worry this weekend. She took (another) spill and spent the weekend in the hospital. She's fine and in the capable care of John's parents but still... Grandma Fern makes me worry.

I also had my car broken into this weekend. There was nothing to steal but baby wipes and a stroller, so nothing was stolen, but we did have to get our window replaced. Maybe this would make other people worry about their neighborhood or their safety but we live in the city and it's bound to happen. This didn't make me worry, it made me mad.

So, in summary, worried, wheat, worried, worried and mad. But Ginny just woke up from her nap and that makes me happy. Ellie should be up soon too. Time for some snacks and some dancing. How can that fail to improve anyone's mood?! Go get yourself a snack and turn on some music for dancing. Ginny's already smiling and bouncing to the beat. I've got to join in....