Thinking About Christmas: a non-FPIES post

Last year, in one of my friend’s Christmas cards – without a doubt THE most anticipated Christmas card to arrive in our mailbox each year –she wrote, among other things, “I also know that back in that stable there were screams of agony, and blood, mucus and poop in the hay, and a tunic soaked with breast milk on the night that Jesus was born.” Let’s be honest, this isn’t the usual Christmas card banter but it got me thinking… and I’ve been thinking for the last year about just this. The BIRTH of Christ. I think we say ‘the birth of Christ’ about a million times during the Christmas season, but I don’t know, even as mothers and women, that we think about it from this other perspective – and I think it’s an important one for us all to consider. To be honest, I wonder if it’s one that isn’t considered because most of those in the pulpit are men, but that’s a different issue all together.

The BIRTH of Christ. I’ve given birth. It’s messy. It’s painful and messy and smelly and exhausting. And dangerous. I don’t know the actual statistics but I do know that the US has an incredibly high infant mortality rate for an industrialized nation. Can you imagine what the statistics were when Christ was born? I am guessing that in the barn or cave where Mary gave birth, there wasn’t a midwife, much less a doctor or nurse. Mary had surely not practiced Lamaze, the Bradley method or hypno-birthing. Mary could, quite possibly, have given birth alone. Not to pick on men or Joseph, but it was a big deal for my Dad to be allowed in the delivery room when my Mom gave birth to my sister, and that was in the 70’s. Men, only relatively recently in history, have played a role in the birth of babies in any way. I’m going to go ahead and guess that nothing was sterilized in the barn the day that Christ was born, and that neither mother nor child got any antibiotics for any reason during or after the birth. There were, by all accounts, animals in close proximity. Farm animals! And don’t even get me started on pre-natal care. Mary had no ultrasound and was without prenatal vitamins. Didn’t she ride to Bethlehem for the census on a donkey? And wasn’t she incredibly young? What, like 15? So… the BIRTH of Christ? Simply because of when in time it took place, it is an event that is marvelous to me (and I gave birth without any drugs). The BIRTH of Christ was fraught with danger at every turn and the Lord God gave to us His only Son to become man this way. Just sit for a moment and think about that. Think of all that can go wrong. Think of what a messy business birth is. The Lord arrived this way. This gets me every time. When I really think of it, my throat closes up a bit and my eyes tear up. He so loves us that He allowed his Son to be born man, like all men, in this messy, dangerous way.

Christ was tiny. He wailed. He had a tiny, misshapen human head. He was blotchy and fuzzy. He nursed. He was wrapped in swaddling clothes because swaddling a child soothes them; feels like it did when they were back in the womb. I think that giraffes walk immediately once they’re born. Whales swim immediately. Some animals hatch from eggs without any parental protection present at all and simply get on with the business of living. Humans are wholly incapable of surviving on their own for years. YEARS. Can you picture a newborn just after birth? Not the round, pink ones you see in TV shows, but a bruised, puffy, real newborn? They’re helpless. They have no hard shells to protect them, no layer of fat to keep them warm, no sharp teeth to fend off predators. I can remember the moment I held my first child for the first time and was overwhelmed with emotion; feeling the love and the pride and the weight of responsibility for her. She needed me. She would need me for a long time. It didn’t end with infancy. Christ was an infant and then a toddler and then a child and a teenager. His world didn’t have safety seats for the donkey cart, vaccinations for all of the diseases that ran rampant, antibiotics, probiotics, vitamins…. Living to 50, during the time of Christ, would have been living to a ripe old age because life was harder. And the Lord God so loves us that He gave us His Son, to live as man lived, in this messy, dangerous way.

When we speak of Christmas and the birth of Christ, I think we all – me included for so long – picture this Nativity Scene: A serene Mary kneeling at the side of the manger and a peaceful Joseph looking down lovingly. The animals sit calmly by and Shepherds visit too. We sing Silent Night and O Little Town of Bethlehem. The truth is, Mary probably wasn’t up for visitors that night, nor was she up for kneeling for too long. She was exhausted and sore. And the barn wasn’t peaceful, but filled with the cries and whimpers of a newborn. There are countries that, as part of their Christmas traditions, sing songs like lullabies, and other countries where people shake rattles to help soothe the Christ Child. I like those traditions. I like the thought of this more realistic Nativity scene. God became man. He became man with all of the trappings and pitfalls and messiness of life here on Earth. For us. He so loves us that He gave us His Son. His only Son. This parental love is a love I understand. This is a Christmas I can celebrate. This gift, this real labor of love, is one I can appreciate. This is the miracle of Christmas. Alleluia!

Check out the FPIES Foundation Support Forum!

Can you tell we're excited? The FPIES Foundation is the realization of months of work and planning - and maybe even years of thinking and dreaming about what what can be done to help FPIES kids and families. So if you haven't checked it out yet, please do so. And did you know that there is a wonderful support forum set up? It's free, easy to use, easy to search, and a great way to connect with other FPIES families. Hope to see you there!

The FPIES Foundation has arrived!

This morning, along with 7 other dedicated moms, I am proud to announce the launch of The FPIES Foundation.

When your child is diagnosed with FPIES, doctors don't have a packet of information to give you or a website to direct you to. It is difficult to find another family to turn to for support and advice. An FPIES diagnosis is isolating and scary, in large part due to the simple lack of information available about it. We hope to change this. We hope that no family struggles alone again, but can find one another, information and knowledgeable medical professionals using our resources. We hope to educate medical professionals so they, in turn, are able to help more families, identify FPIES earlier and avoid additional complications.

I am so proud of what we have accomplished. I am so proud that it aches in my chest... and this is just the beginning. There is so much in the works, so much more to come! It feels WONDERFUL to be doing something so proactive - especially as FPIES is such a reactive condition (feed something to your kid and wait to see what happens). We did this for Genevieve - and for Brendan, Sam, Samaya, Carter, Kara, Bridget and Ellie... and we did this for YOUR FPIES kiddo too. You are not alone!

Newsflash!

It's been a long time. Again. I used to be a prolific little blogger and now... time flies, days pass, and blogging falls lower and lower on my prioritized 'to do' list. Yes, I really do have one. I think all the time about my friend who is a mom of 7 and wonder at how she gets so much done every day and worry about the lack of accomplished items on my to do list. Wipe noses? Check. Wipe butts? Check. Feed little monkeys? Check check. Feed myself? Yeah.... soon :) Clean the house? Yeah.... soon-ish?

But we do have some updates. Wanna hear them? You're reading this, aren't you? So I'm guessing the answer is yes. If not, stop reading now. Okay, here come the updates....

1. Ginny's FPIES story was recently featured on WGN news. Really. Crazy, right? As you all know, we've RAVED about Wonder Woman and, via a friend of mine who works at the hospital with which Wonder Woman is affiliated, the hospital's PR department got wind of our story, pitched it to the news and... there we were, on the news. They interviewed me for well over 30 minutes and it was a little nerve wracking knowing that they'd be editing that down to about 2 minutes. In my usual style, I didn't remember to do much advance planning for this and was left wondering, the day before, just what we should wear and what they might ask me. John said they would surely ask about our first trip to the ER and that threw me. Of course they would ask that. Why wouldn't they? But I can't think about that, much less talk about it, without getting choked up. I went over and over it in my head, thinking of ways I might tell that story without getting all teary eyed. That didn't work. They asked, I got choked up and, to make it worse, followed my blubbering with nervous, crazy laughter. Oops. Overall though, I have to say that the crew that was here was lovely, Wonder Woman rocked (and, we found out afterward, was sick as a dog the day they interviewed her but she toughed it out for us!)and we feel like it will really help get the word out. Wonder Woman let me know that she was surprised and pleased by the number of colleagues and patients asking her about FPIES. Hooray! So... you wanna see it? If you watch it, you MUST promise not to make fun of me. Promise? Okay, here it is. Oh... and the Goob looks so cute :)

2. We have more food passes. Hooray! Genevieve has added raspberries, asparagus, grapes and raisins, plums and nectarines, potatoes, safflower oil and CORN to her safe food list. Yeah, I am a proud mama and watching that kiddo happily gnaw on an ear of corn really makes me smile. Thinking of her eating an ear of corn at the pumpkin patch this fall makes my heart soar! This makes our safe food list pretty big, but it's amazing where soy and rice (and oats)lurk, keeping us from so many packaged food - and still mostly anything from a restaurant. But.... every day is better. With the pass of eggs, we found another ice cream safe for G. She umm.... well, she loves it.



3. As big as our safe foods list is, we have some foods on there that no longer really figure in. Ginny refuses millet and quinoa. I wonder if she was so overloaded for so long that, in light of new options, she is just no longer interested. Funny, right?

4. Without a doubt, Genevieve's favorite meal would include salmon baked with a little bit of butter and lemon juice, grilled asparagus, blueberries and Haagen Dazs five chocolate ice cream for dessert. I am already planning to serve this to her for her birthday. Yes, her birthday isn't until November. Yes, I am giddy excited to have so many options for her this year vs. the banana, quinoa muffin she had last year.

5. Genevieve is doing incredibly well. She looks healthy. She smiles and laughs and follows her big sister around like a baby duckling. We live in a monkey see, monkey do world and the sound of my two girls laughing together, and having them get to share so many snacks, is an overwhelming, heart wrenching joy. We are so blessed that, despite our early fears, FPIES has touched our lives in (comparatively) a very mild way. There are others who are struggling. Just thinking of these kids, these families, makes me cry. Not to preach, but if you know anyone struggling with a chronic illness, don't forget to reach out. Pray. Make a meal. Babysit. Just listen. Support makes all the difference.

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.

The Effects of FPIES

The effects of a food reaction for an FPIES child?
Vomiting, diarrhea and dehydration leading to possible shock symptoms, for starters...

The effects of FPIES for me?
Although the list is long, the worst of it is the paranoia. I am paranoid. After having friends over I spent a ridiculous amount of time sweeping and vacuuming every corner of our home. I am paranoid that people think I am ridiculously paranoid. I am embarrassed and constantly apologizing for cleaning up food on our floor, or moving their kid's food further away from mine at the table, and moving their kid’s snack trap up to a higher shelf where mine can’t reach it.

The effects of FPIES for Ellie?
She’s paranoid too. She happily grabs ‘her’ vacuum cleaner (the small dust buster-like vacuum that we have) to help me attack every last crumb to keep her little sister safe.

Growing up too fast. Ellie spends an inordinate amount of time pretending that her stuffed animals are sick and often, throwing up. She lines up plastic cups for them to puke into, one after another. Sometimes, they throw up so much that they have to go to the hospital. She is simply re-enacting what has been a part of her life, I know, but it’s disturbing to see how blasé she can be about this. Ellie has been to the ER twice with Ginny for FPIES reactions and once with Ginny after she tumbled down some stairs. Ellie calmly waved goodbye once as I took Ginny to get some stitches after a fall at a friend’s house. She acknowledges the ER when we drive by. Ellie knows which foods are safe for Ginny and got very upset when I fed her watermelon recently, even as I tried to explain that we were trying a new food. The understanding she has of all of this is well beyond her 3.5 years.

Fear. Recently, Ellie had a friend over and that friend got sick while she was here; vomiting repeatedly before her parents arrived to pick her up. It was the flu, but Ellie was in hysterics, certain that the little girl was headed to the ER, knowing that an ER trip for a puking kid is long and not at all fun.

The effects of FPIES for Ginny?
Again, the list is long. Although the health issues and potential issues seem like they should be at the top of the list, the worst and most encompassing of it all, in my book, is the lack of normality. I find it INSANE that she loves to say ‘cookie’ and points to the little table of snacks that we see as we arrive at Ellie’s preschool 3 days a week, yet she cannot eat a cookie. My heart breaks each time she daintily picks up a tiny piece of something from the floor and hands it to me saying, “Here you go!” Shouldn’t kids try to put everything in their mouths? I doubt they should be worrying over every speck on the floor like my kid does. And I desperately want her to get to eat what her friends are eating – that special, delicately frosted, butterfly cookie that the café has for spring time. She doesn’t even ask.


All life experiences change us and shape us. Life is change. What doesn't kill you makes you stronger. I know all that. I get it. Truly, these effects on our life are small. Other families certainly have it worse. Still, it really bugs me that FPIES gets to shape my kids this way – that it gets to shape me. I have to believe that we’ll all come out stronger and better equipped at the end. I have to believe that, but it still makes me sad.

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?

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.

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.

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.

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....

What? Wheat?

This is what Ginny can eat:

• Fruits (8): Pears, apples, strawberries, blueberries, mango, bananas, avocado (yes, it's a fruit) and peaches
  
• Vegetables (3): Spinach, broccoli and carrots
  
• 'Grains' (2): Quinoa and millet
• Meat (2): Grass fed beef and salmon (we think, although we never really got her to eat enough to be certain)
  
• Milk (1) including yogurt and cheese
• Other ingredients: honey (in baked goods), cream of tartar, baking soda and canola oil
  

That totals 16 safe foods if you count the salmon. Some days, that seems like a lot. Most days, it's still pretty limiting to try to feed her. Fruits and vegetables can only take you so far. She doesn't want much pureed these days, unless it's in a smoothie, so she gets things raw, freeze dried and cooked. The quinoa flakes are a one-meal-a-day staple and the quinoa flour (and some fruit) has made its way into muffins for G, but there are just as many days that she refuses these as days that she's willing to eat them. The quinoa pancakes, apparently, didn't pass muster. The millet puffs we have remaining in our house are one of Ellie's favorite snacks, however, Ginny isn't interested, and the millet flour in cookies was a notable futile attempt at getting her to eat millet in another form. She gets ground beef cooked. I have no idea how else I might feed this to her really. I once tried a patty and she simply, repeatedly chucked it across the room Frisbee style. Milk is a wonderful addition to her diet, along with the yogurt and cheese. I know there are other dairy products out there but we haven't made it through them all yet - and most have so many crazy additives (xanthum gum and carob, sigh....) that it can get tough finding brands that will work for G. I'm open to recipes and ideas, of course, but my own brain seems to be in a fog and unable to think creatively with these ingredients these days.

So, in an effort to expand Ginny's diet and relieve my frustration, I intend to do a wheat trial. Other FPIES moms have inspired me! My mind is made up. If I type it here and make it public, I can't go back, right? I had considered corn but it's simply not as nutritious. I'd like to try potatoes some day too, but wheat wins. I have no idea how she'll get the wheat to eat, but she will. Soon-ish. Wheat. Wow.

Time Marches On...

Ginny is working on stair climbing. More accurately, she's obsessed with climbing stairs as if magnetically attracted to them. This kills me. Kids and stairs make me very nervous. But... Ginny wants to climb stairs and I'm letting her, under my close and watchful eye/when I am right behind her. So, it was on one of these trips up the stairs the other day when I had one of those movie-like-memory-sequence experiences. Do you know what I mean? It was all over in a split second, but I swear I saw a million little pictures flash by showing how time has marched on. It took my breath away, left me grinning and choked up all at once.

As Ginny climbed up the stairs I saw, in my mind, a 15 month old Ellie climbing the very same stairs, turning and grinning at me and then hurrying to catch up with Buddy, who was waiting just a few steps ahead, for her to catch up. When Ellie was at this stair-climbing-stage, we still had our Buddy Dog (our best-dog-in-the-whole-world-rescued Buddy-Spaniel who passed away the August before G was born), so Ellie never climbed alone. Neither one went up or down without the other. I saw Ellie and Buddy climbing the stairs. I saw Ellie learning to slide back down and Buddy trying to keep up as he grew older and slower. I saw Ellie jumping in puddles, soaked on a Spring day, reveling in the rain and her lady bug raincoat and rain boot ensemble. I felt the 'weight' of a tiny newborn Ellie in my arms.... and then, without pause, I remembered that Ellie has recently outgrown that once-over-sized rain gear and that Ginny is growing into it. I remembered a tiny newborn Genevieve coming home for the first time and how big Ellie seemed that day- how much bigger she seemed after having been away from her for just 48 hours. I realized that Ginny will never climb stairs alone either - and will always have a willing partner next to her when she slides back down. It was a split second. The briefest of moments. I saw both of my children and felt them in my arms as infants - and knew how fast the time has flown by.

Ginny kept moving up the stairs and I followed behind, ready to catch her should she fall; just where I'll always be for both of my girls. Time is marching on.

Eloise, July 2007

Eloise, January 2011

Genevieve, January 2010

Genevieve, January 2011

I Quit. I Give Up.

I'm with you Edie Brickell and all of your New Bohemians. I quit. I give up. I am done. If I wasn't afraid of offending too many people or shocking some family members, I would cuss up a storm tonight. Recently, some friends have remarked on 'how well I'm handling things.' I'm about to screw up my track record. I'm about to whine and complain and forget all the reasons I have to feel blessed and lucky in this FPIES mess. #*(@!*& (#%( *$)%_+$()$( ***#*$@)*. That's right. I just said that. Grrrr.....

A Big Deal

Today is Valentine's Day. We don't really go schmoopy-crazy around here. Besides, like every other holiday and celebration and occasion, this has turned into yet another opportunity to make fun themed crafts, fun food and give fun little gifties to the kiddos. But I will get flowers from John, which I love, and John, Ellie and I will 'make' and eat a fondue dinner together tonight, which will be fun and possibly very dangerous what with the fire, hot liquids and sharp pointy sticks - and Ginny will get milk. That's right. Milk. As much milk as her little milk-lovin' heart desires. That's why you're reading, right? Not to hear about our Valentine's Day but to hear about Ginny?

You're never going to believe this....

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?

Where O Where Has the Little Blogger Gone? Where O Where Can She Be?

Where have I been? It all started when our computer got a virus. It was icky. For the first time ever, I had to send my little laptop away to the computer-doctor-men to be fixed. Those tech guys are kinda scary. They speak a foreign language and really don't like kids in their shop. Although, to be fair, my kids near their equipment might have scared them as much as their tech talk scared me. The computer-doctor-men confirmed that my computer was a wreck and needed a serious intervention. It was gone for days. I was email-less and blog-less and facebook-less and online FPIES support group-less for awhile. It was sad. I have to admit though, it did free up some time. The computer-doctor-men, true to their word, fixed things up and got us back together again, all for the low low price of $79.99.

It wasn't long after this happy reunion with my laptop that something even worse happened to my online life. Hackers. That's right. Hackers. I can't call them icky. I have worse words to use. They took over my email account. They took over my facebook account. I had to change the passwords for every online everything anywhere ever. What a mess. When I regained my email account, my inbox had been emptied. My contact list had been deleted. My facebook account, despite many valiant attempts at reclaiming it, remained closed for well over a month. This is when it all started - or ended really. After all that, I found myself online much less. Maybe my online habits were altered when the technology was on hiatus? Maybe I'm just wary of it all? Maybe this is all just rambling and with the holidays and 27 (no, that's an exaggeration, there are really only 7) family birthdays in December, followed by the flu and nasty colds running rampant in our house in the new year, life just got hectic. No matter the reason, I've been MIA. Guess it's time to make an online comeback...

While you and I were apart, Ginny has made some progress... as well as a few steps backwards, but good news first.