Baby B's 200th: One for the Peg Board

Dealing with a rare diagnosis, doing everything in your power to help your child/children, navigating doctors appointments/reactions/kitchen debacles with strange ingredients. . . let's face it. FPIES is HARD. Its ok to say it! All of you families that live this day in and day out, you are far stronger than you truly realize and really ought to be commended for all that you do!

As we move through the days,months and years with this diagnosis, we have encountered pediatricians, specialists, medical support staff and allied health providers. We have read countless medical journal articles, shared stories on support forums, and accessed essential information from support organizations. All of these encounters and experiences provide us with an opportunity to gain tools, tools to add to our "peg board" in our work shop, as it were. But it is our job to identify the tools and to use them to the best of our abilities and to the best of each tool's usefulness.

Imagine a house without a door. You are inside and need a way to get out-- you have a door that needs to be hung and its hardware. Your tools include a wrecking bar, a ratchet, and a saw. You can certainly use any of these to cut or smash a hole in the drywall, and the wrecking bar is likely to get you through the exterior wall as well. But what you end up with is not a door, but rather a hole in the wall. Then, someone comes along and hands you a drill. Suddenly, you can cut that opening with your saw and you can use your framing, hinges and screws to attach that door. You don't balk at using the drill because it isn't green or pink or red, or it came from Home Depot rather than Lowes-- if it works, it gets used. And that hole becomes a door.

That is the thing with tools-- they are typically only useful if they are being USED. I encourage all of you, whatever place you may be in in your family life with FPIES, look around at the tools being offered. Sometimes they may be in places you would not expect, sometimes they are handed to you, no expectations, no questions asked. It is our tools that will power us through the dark nights, on to more information, on to opening doors that seemed helplessly stuck. A solution starts somewhere and it is the tools, not the color or brand or location of the tools, that will bring us closer to the answers we so desperately need for our children and our families. Let's connect to one today:
 

A Place on the Map

We love maps. In fact, our homeschooling curriculum (self-created) is based on geography. More on that later. . . So, yes. The girls love maps, even little C, who is now, wait for it. . . 18 months old! But despite our love for maps, we have often felt like a family without a compass, navigating the chaos that we know to be FPIES. We have often felt "off the grid" when we go through periods of family life seeming, well, "less than normal."

Tonight, however, we find ourselves looking at a map, and guess what?! We are ON it! That little flag? That's us! I am talking about The FPIES Foundation's ground breaking new release--- a global registry for children and families affected by FPIES! All of these years (we've been active in the FPIES community for 4 years now) of hoping that someone could share the information from the families living with this condition in an organized way with the doctors trying to help our children, and now with a click of a button, this is all possible. The FPIES Foundation has figured it out!

The other thing that B, C and I love (Daddy loves it too!) is that this registry doesn't just stand alone-- it is actually part of the National Institute of Health Global Rare Disease Registry program through a program called "Connect," by Patient Crossroads. Our information is not only going to make an impact for families but it will also make a large impact on a far larger scale.

Click on the button to connect and add your little one to the growing group on the registry. Find your place on the map-- can you find us? We've been looking for you!

My Good Girl

Tonight at bedtime, we were reading to the girls. Reading is a big fun time at our house and we had a nice stack of books this evening, including one of my favorites "Everywhere Babies." The book is very cute. B got it for her first Christmas and I knew that C would love it the same way B did, and I was right. The funny thing is, the last line of the book always brings tears to my eyes: "Everyday everywhere babies are loved. For trying so hard, for traveling so far, for being so wonderful, just as they are."

My girls try so hard, so very hard.

In the last year or two, B has really struggled with behavioral and sensory issues during reactions and reaction recovery. She has pain, a lot of pain, and she exhibits a lot of disturbing behaviors that only present themselves during a reaction or in the immediate recovery period. Behaviors that I haven't seen since I was working in residential psychiatric settings. Thankfully the majority of these have occurred at home but there have been a few to occur in public settings.

Every time I see her that way, my heart breaks.

My girl gets lost inside of herself, lost behind tactile defensiveness, behind that horrible scream. I sit with her, as close as she will let me sit. I offer to hold her, I offer to bring her water, blankets, stuffed animals, anything. She continues to scream, thrash, claw at her skin and clutch her stomach.

This is my good girl, the girl that loves to hug her baby sister, the girl that gently kisses each of the newly opened daffodils in the spring time, the girl who snuggles up to me to read a good book.

Eventually, she allows me to give her benadryl and takes a sip of water. Eventually, she starts to "come down." Eventually, she allows me to hold her and her screams turn into tears. The clock keeps moving and the morning comes. After she wakes, she asks why I am tired. Why we can't drive anywhere in the car today (because I am too tired to drive). I remind her that we were up together in the night and she says she doesn't remember. I believe her-- she doesn't act or look as though she remembers.

When B was a baby, I would sing her a little song, "She's a sweet girl, such a good girl, such a happy girl--- Mama's happy girl." She called herself "happy girl" as a young toddler. She loved hearing the "happy girl song." She has had many, many ups and downs and been thrown quite a few loops, but inside, I still see glimpses of my "happy girl," even in the middle of her darkest nights.

So why am I writing about this? Why now?

I have kept a lot of this to myself, trying to maintain some dignity for B, and to be honest, out of insecurity. Here I am, trained and well-versed and practiced in de-escalation strategies, yet I can't figure out how to help B at the times she needs me the most. All I can do is to be there with her and to wait, wait it out.

Maybe that is the point to this post. I remember when she was a baby and she would scream for hours upon hours. I was scared, bewildered, and sometimes I would cry right along with her. But I remember thinking to myself, even if I can't figure this out, even if I can't fix this right now for her, I can hold her. I can be with her. And four years later, that is what I am still doing.

My hope for her is that we can find a way to help her cope. I want to find something to take away the pain or at least take the edge off for her. I don't like that her world feels so scary and so painful at times, times that happen far too frequently.

I want these things because I want the world to see her as I do-- my good girl. Not a "behavior problem" or a "difficult child," but as the good girl that she is. The girl that I know will grow up to do wonderful things and that will change her world, just as she has changed mine.

So if you know B, because of this blog or because you have had the good fortune of meeting her, I hope that you will think of her for being this good girl. I hope that she has already changed someone's world through her recipes. I hope that she has changed someone's heart by their reading of this post-- maybe next time they see a child having a meltdown, they will think of her and how hard she tries and how scared she sometimes feels. If we can accomplish this, then her work of changing the world has already begun. Thank you for supporting B.

Happy Birthday, B!

We just recently celebrate B's fourth birthday! I will post more later, but just some pictures of this year's cake and muffins. Note the shark fins in the muffins and the pink sea turtle. . .

Rare Diseases Day: Let's All Dare to Be Rare!

Another year finds us at another Rare Diseases Day. This is really an incredible day to unite with other children and families affected by rare diseases and the challenges that entails. Being affected by a rare disease, whether you have the diagnosis or whether a loved one has it, can change your entire life style, your entire reference for what is your family's personal "normal." This year's theme is "Rare Disorders Without Borders." When I hear that, I can't help but think of the amazing families and medical professionals we have met along our children's journey with FPIES.

It is an interesting journey indeed, and along the way we have met people that we never may have crossed paths with otherwise. And now I can't imagine our lives without those encounters. Each person along the path has the opportunity to touch others on the road, to lift someone up, to affect change on both a large scale and on a personal level.

I have seen a lot of families come and go. It is very encouraging to see others moving on, especially when it is because their children are outgrowing their FPIES symptoms or because their diet has become far more manageable. To be honest, it is hard to be the ones not moving on. Sometimes it feels like being left behind. It doesn't detract from any joy I feel for the other families, however. Knowing these feelings, I cannot say enough how appreciative I am of the families that do not forget, those that may move on, but do not leave others behind.

Just recently, I have seen a handful of mamas posting about their children's successes with outgrowing FPIES. It is so encouraging seeing these families returning to the support groups that once lifted them up to do exactly that for other families-- to lift them up. To encourage. To tell them that it doesn't stay dark forever, that there is hope, that there is change.

I know there are also families that have moved away a bit from the groups because their children are older but their FPIES symptoms remain unchanged. As a parent of an older child with FPIES, I know how hard it can be sometimes to stick around and watch others move forward as our children seem to be stuck. But these families still reach out, continue to use the knowledge they have to share with others, in hopes that the next family will be helped, maybe they won't have to reinvent the wheel. . .

The doctors and other health professionals that we have been so fortunate to have care for our children have made far more of an impact than I think they realize. Yes, I feel like my children receive excellent medical care. But beyond that, I feel like my children are supported by practitioners that care about them, not only a simple diagnostic code on a page. My children's quality of life, developmental milestones and personalities are all considered. When B was a baby, her old doctors viewed us as a problem-- it was even written that way in her chart. They did not view her situation as something requiring help or answers, even when she arrived unconscious at the ER just a few weeks before her first birthday. With B's current care team (whom we love), they view her and her sister as people (tiny, adorable people) that deserve the same dignity, respect and consideration as any other child or adult.

So as we celebrate Rare Diseases Day, let's all "dare to be rare"--- instead of moving on without looking back, or instead of seeing a child as nothing more than a diagnosis, let's reach across the borders that these choices create and remember how we felt the first time someone in this community connected with us. Let us all remember how to lift one another up, how to be a light in someone else's darkness, and how to see each child as a special little person, unique in his or her needs and abilities, and not simply a name attached to a diagnosis. To all of you already being this light, thank you for making the choice to dare to be rare. As I always say, the road of FPIES is a difficult one, but thank goodness that the company is great. Happy Rare Diseases Day!

Non-Food Preschool Craft Recipe: Fingerpaint!

Art supplies can drive us crazy, especially the non-toxic food based ones! I can't tell you how frustrated I get by the wheat and soy exposures in various children's art supplies. Since I try to minimize frustration, I just make my own. Mine are prettier anyways. . .

This fingerpaint recipe is not my own but it is the best I have tried thus far. It really turns out beautifully and is super easy to make. Just go to this marvelous woman's blog here! The blog title says it all!

A quick note on ingredients! Not everyone is ok with corn starch! But that's ok! There are other starches! The key to remember when subbing another starch in for corn starch is that not all starches share the same degree of heat tolerance. Corn starch is a very stable starch but arrowroot for instance, is very finicky about heating and breaking down when over heated. If using an alternative starch, you may want to heat at a lower temperature and watch it like a hawk. Once it acheives a slightly thicker consistency and is steaming, take it off of the burner and continue to stir consistently until it becomes as thick as a thinner pudding. It will thicken further upon standing.

B's Top 10 Homeschooling Sites

So yes, we are just newbies, but in true allergy mom fashion, I have been doing a ridiculous amount of research. We have chosen to approach homeschool in a Montessori-inspired direction, so many of the resources I have been following are of that persuasion.

1. Q & A about Montessori Homeschooling Concepts
2. Living Montessori Now 
3. This is the best site to date-- activities separated by category, how-tos. . . perfect for those starting out!
4. Images of work trays
5. Montessori on a Budget Pinterest Board
6. My Montessori Journey
7. Montessori for Learning
8. A Great Article for Dealing with Sensory Issues and/or an Intense Little One
9. Great Sensory Activities!
10. Itty Bitty Love-- A Blog from A Montessori Teacher

Apricots, Sea Turtles and Getting Schooled

Wow, its been forever. I now remember why I didn't start my blog until B was around a year old--- babies are super awesome but allow absolutely no time for blogging! ;) That's ok-- I love all of you dearly, but seriously, B and sunshine-y Baby C happily take center stage in my heart and daily schedule.

So what's new? Baby C has been standing and cruising a few steps since just before turning 8 months old (we are in so much trouble, haha) and is a sweet little dream. She is a stinker, however, just like her big sis. I wouldn't have it any other way. She does nap more than B ever did, but naps still only amount to roughly one, one hour nap every 2-3 days. My kids never got that memo about how small ones are meant to nap. . . I think she is simply far too interested in what B is up to--- she completely adores her big sis and the feeling is about 85% mutual. B is enjoying our first few rounds of home school and I am slowly taking in the learning curve that teaching your own kiddos requires. I think this is going to be a great way for her to get a start on structured schooling and she is certainly excited about the plans we have for the weeks ahead. We are taking it slowly-- she is a pint-size one after all. The trickiest part so far for mama seems to be keeping Baby C occupied and feeling included while school is in session. Hopefully, we will all adjust soon!

With B's birthday coming up in the next few months, that is a hot topic around here. Her second birthday cake was a pink hippo, last year was a frog and this year, she wants a sea turtle cake. And she will have a sea turtle! I even got a little chocolate fish mold to make little fish for decorating the cake platter! I will also be making mini cupcakes with frosting-formed anemones on top. I know-- its crazy. But birthday cakes make all of the hard recipe creation work really pay off. And this cake will be epic-- she is turning four, after all!

FPIES/allergies-wise, we are still in a bit of a tricky spot. But we are trying! After eggs (mega classic FPIES fail), salmon and starfruit being all a bust for B, we are moving on to cauliflower this week and hopefully apricots next week (they were an awesome deal at trader joes-- I couldn't pass them up!). Trials are tricky for B because we see a lot of random reactions between accidental exposures (she is pretty contact sensitive) and unexplained instances. But because of the lack of formula and because her diet is still a bit limited in certain areas in particular, we have to keep going with trials for now. The good news is that she is currently INTERESTED in trials, so that helps to keep momentum up.

For C, we are still striking out but we are going pretty slowly, so hopefully it is just a matter of time before she gets her first safe food. Currently, buckwheat looks promising, but I can't get her to eat more than a teaspoon-- she is fairly repulsed by it, hahaha. I think she will be venturing into the land of apricots next week as well and perhaps if those can pass (or if apples pass, since those are up next) I can bake with buckwheat flour for her or at least mix the fruit with the cream of buckwheat for a bit of a tastier experience. I also have those mesh food feeders-- maybe baby popsicles are in her future?

C is being looked at for an FPIES diagnosis and we are keeping some IgE considerations on the radar due to her reactions through my milk and a few suspected airborne instances, as well as multiple contact reactions. It is a lot to consider and my nursing diet still is extremely restricted, but that said, I feel like getting a handle on my diet early on in the game has helped her. She is almost 20lbs, is meeting her milestones and is just so happy a large amount of the time. I would fortify air and give up all food if I could still nurse her and keep her moving on this path! ;)

Its so funny that even though this is the second time around, we still have a lot of periods of uncertainty and struggle with the emotional side of things.We know what to expect, sure, but it still hits just as hard when I see her react, etc. And I am still hoping for a few foods before her first birthday. In my heart, I know it is ok to go at her pace, and that this is not about hitting everyone else's "norms," but allowing things to happen at the right times for HER "norms." In fact, I am already starting to plan the birthday items. I found this adorable birthday cake toy-- it is perfect size and the little items in it are just the right size for little hands. Plus, the price wasn't too shabby! I also got some great inspiration from the mamas I know who have navigated the food-free festivities before on here and here. Either way, it will be a great day and she will be surrounded by everyone who loves her and who she loves. Doesn't stop me from plugging for apricot sorbet however. . .

Be sure to check the next post(s) for our favorite homeschool resources and a few tips and tricks we have learned so far (we are still newbies!). I will do my best to keep you guys apprised of updates!