Friday, March 28, 2014

Children's Museum Fun.

Today we went to the Children's Museum of Southern Minnesota with Mari and her girls.  Until last weekend, I didn't know Mankato had one. 

It was easy to find with free and easy parking-my kind of venue.  Myra had fun exploring and the big girls loved showing her all the cool stuff the museum had to offer.

A cool treehouse thing with a ramp and rock climbing wall to get into it.  Once up, there is a pulley system basket...
...a bridge...
plus two rooms, and stairs down to...
a fun tunnel system.
Foam blocks!
There is a basement with more fun.
A water play room
Some pretend areas like a quarry, a grocery store, a pizza place, and...
a veterinary clinic.
Oh, and a dress up area with a stage!
(Yes, Angie, I'm wearing a tutu.)
You have to bring your own cute babies, though.
Only $6 to get in (phew! Myra had just enough money...didn't actually plan that for this photo, but sweet.)
There is more not pictured, plus they're working on a very cool new site!  Myra is worn out and fast asleep now.

Wednesday, March 26, 2014

FPIES: Food Selection.

Part two of my last post on food trials-how we choose the foods to trial.  Myra's second safe food was coconut, and I couldn't even count how many times I've heard (and still hear), "coconut??!?" Then I attempt to briefly explain how we landed on coconut as our #2.  So, here is the not so short explanation.  (Note: we will be seeing a nutritionist/dietician soon which will be a great asset to our food selection process and Myra's medical team as a whole.)

The goals/things to consider when choosing foods for a child with such a limited diet are as follows (in kinda-sorta order of importance but it's really just a balance):

Risk (for FPIES in general and based specifically on Myra's history)
Versatility (in cooking options and in forms of the food itself)
Textures and appearance
Availability (seasonal vs. frozen/canned, local foods)
Safety (foods appropriate for her age and ability level)
Whole picture/end goal (work towards actual recipes, meals we can all eat together)

Now for the more detailed version of that, including how we calculate some of those factors.  Our process has been adapted from that of another FPIES mom, Jamie V., so her ideas are cited throughout this post as "(JV)."  Remember, Myra still drinks a lot of her amino acid based formula, about 20oz of a toddler formula (Neocate Junior) per day, so she is still getting most of her calories and nutrients that way for now.

I start by analyzing Myra's current diet, adding her most recent passed food.  I go to the Nutrition Data Website and create a recipe that includes all of Myra's safe foods (JV).  This is an average.  So, for example, if she alternates between 1 cup of blueberries and 1 cup of peaches for breakfast every other day, I would put 1/2 cup of each in the recipe since that is the average.  Once I have an average amount of all her safe foods entered into the recipe, I click "Save & Analyze."  It tells me the nutrients in which her foods are high and low, so I can see what is lacking in her diet.  Currently, Myra's diet is lower in Vitamins A, D and E, Zinc, and Calcium.  I will keep those in mind when deciding the next food to trial.

Calories are important, so we keep that in mind when choosing foods.  Many of the really nutrient rich foods (spinach, for example) are lower in calories.  Again, it's all about balance.

This is the scary part.  We want to choose foods that are likely to pass and, therefore, avoid the trauma and setback of a fail.  There is a time and a place for the riskier foods, or even challenging foods that have failed in the past, but we want Myra to have a little more variety in her diet before we pick something risky.  We need safe foods to fall back on while she recovers in the event of a fail.  If she passes a riskier food (eggs or corn), it can make life a lot easier.  Anyway, we first look at this website which shows survey results for actual FPIES children and the foods they've tried and whether they passed or failed (JV).  There is no sure thing with FPIES, but a 99% pass rate vs. a 60% pass rate makes a big difference.  The sample size is also worth noting, 50% is different if it's 1 out of 2 or 100 out of 200.  We also have to consider risk specific to Myra's history of passes and fails.  Because she failed soy, green beans, and peas (all legumes-two out of those three with severe vomiting), we will be avoiding any legumes for a while.  For example, even though red beans have a 92% pass rate, we won't be trying them anytime soon.  Similarly, I use this website to look at the food families of her current passes that will hopefully point us to other foods in those same families that will likely pass, too.  It is also available alphabetically, so I can easily look up specific foods to see their food family. 

We look for versatility in both how the food can be used/prepared and in what forms the food is available.  This was a big part of choosing coconut.  It is available in flakes, chips, flour, oil, milk, water, and manna/cream concentrate.  As for cooking, the flour is obviously useful, oil can be used as a butter replacement, coconut milk as a dairy milk replacement (homemade ice cream!!), and the manna can also be used to replace butter and to make frosting.  What's more, coconut oil has a ton of great uses outside the kitchen, like as a skin moisturizer and soap, so we have no concerns about Myra drinking her bathwater or licking her lotion (kids love to do both...).  Did you know Burt's Bee's baby wash has soy in it?

With a limited diet and a developing palate, we want to make sure Myra is getting a variety of textures.  Some children who are on very restricted diets end up having texture aversions and actually go to food therapy to overcome that.  When we first started solids with Myra, we followed the baby led weaning model and skipped purees.  She had so much fun with food!  When she started getting weird rashes, we took a more cautious approach and reverted back to the guidance of a new food every four days.  We're on WIC and it was easier to just use the purees we got.  Within two weeks, Myra had two repeated/projectile vomiting episodes and we eliminated all solids until we could get in to see the first allergist.  With all that lost time on Myra exploring solid foods (the saying "food before one is just for fun" was so not true for us), we noticed some issues with texture when we ultimately started solids again.  Myra would eat her pureed peaches, but would chew on then spit out any solid form.  This is how we chose potatoes.  There are many texture options for potatoes (mashed, boiled, baked, fried, chips, CheeCha Puffs-a favorite, plus flour/starch). Appearance also has a role.  We're still trying to ensure that eating is a fun experience for Myra, so having fun colors/shapes/textures on her plate (who am I kidding, we don't give her a plate...her tray) is worth something, too.

We need to make sure we can actually get the food.  Mango has a pretty high pass rate (89%), but it's not always easy to find.  We prefer fresh, but if we can find something that's available canned and especially frozen (less additives), that's a bonus.  I like to stock up on foods once it's safe for her so we always have stuff on hand she can eat, and choices for her, too (canned or frozen peaches, for example). (Some tips from JV here, too)

Myra's allergist has been very diligent about reminding me to be mindful of Myra's age/ability when giving her new foods, even foods he suggests.  So, he suggested pork, but it's my job as the parent to make sure it's prepared in a way that is safe for her to eat (choking risk, mainly).  This might be less of a concern if we had been able to continue with baby led weaning, but it is what it is.

Big Picture
Of course, the long term goal here is to get Myra on a 100% food (no formula) diet that consists of "normal" foods and recipes, ideally eat together as a family, etc.  So, things like eggs will be very helpful in preparing "normal" meals like breads, pancakes, muffins, and many other baked goods.  With her current safe foods of peaches, coconut, potatoes, and blueberries, there are only a limited number of "recipes" I can make-there are some,  just not many.  It would be nice to be able to use her safe foods to make different meals for her, not just the same individual food items day after day.  Luckily, she doesn't mind so far, but that's the long term goal.  She will be on formula for quite a while, but the more calories/nutrients she can get from foods, the less formula she will need.

And, of course, there are other little things to consider like: if this food is available canned, is that version safe (so many packaged food items have the most bizarre things added, like most canned peaches contain pear juice and other ingredients-look at your labels sometime), is it messy (blueberries stain, but she loves them so oh well), is it available in freeze dried form (Myra loves those and they're less messy!), does it make a good finger food (motor skills-babies/kids learn a LOT more than how to satisfy hunger by eating), is it easy to eat on the go (we like to do things and have to bring her food everywhere we go), etc.  I probably never stop thinking about food, but luckily it must be mostly subconscious by now so I can actually accomplish other things.

Now that you know our process, here is the quick version of how we chose Myra's first few food trials:
Peaches: After we switched Myra to formula, she immediately began struggling with constipation.  She had previously had peaches, they have a high pass rate, and help prevent constipation-perfect.
Coconut: Already explained, but mostly for the variety of forms (milk, flour, oil, manna, flakes, etc.) plus the actual nutrients/healthy calories.
Potatoes: At this point we were getting more concerned about texture issues since she was still refusing any solid form of peaches and only eating the purees.  So, texture variety and ability to mix other foods into mashed potatoes in the future won.
Blueberries: Myra's allergist suggested a berry, they're a good finger food, available frozen.
Spinach: This one hopefully passed, but we had some really goofy night's sleep during the trial, so we finished the two weeks but put it on the back burner for now and we'll revisit it sometime.  Anyway, we chose it because of its nutrients and high pass rate (obviously not for its calorie content!).
Pork: Myra's allergist suggested this as a high pass rate protein (86%).  Trevor comes from a hog farm family (availability!!) and it comes in many forms (bacon, chops, ground, bacon, ham, steak, bacon...).  Meat broth is often used to add flavor/calories to recipes and to promote gut healing after a fail/illness.  This even gives us a gelatin we can use.  We're not wasting any part of the pigs, here!
Cocoa: I wanted to be able to make my kiddo treats.  Cocoa can be used to flavor things and I have found two brands of chocolate that are only cocoa and sugar (Enjoy Life and Amanda's Own).  So far, she doesn't love it (I don't like chocolate), but it's an option now!

Note: We have since met with a dietician who backed up our process and provided guidance on nutrition goals, toddler serving sizes, nutrients, etc.  Although we have a great system for figuring this out on our own, meeting with her is an important part of food selection for us.

I am 90% sure this is in my head and not intended, but I have sometimes felt questioned about how we pick foods for Myra.  So, yeah, no need for that-it's alllllll under control.  Like, totally 100% under control.

A big thank you to my fellow FPIES parents, Myra's allergist, and resources like IAFFPE and The FPIES Foundation for all the information and support we have received!  We would not be making such educated decisions without that wealth of knowledge and experience.

Click here for more details about Myra's foods and other FPIES posts
Click here for the post about our journey to Myra's diagnosis

Monday, March 24, 2014

FPIES: Food Trials.

(The link colors are temporarily goofed up on my page, click on the title of this post and that should fix itself until I get the actual problem fixed.  Sorry, folks!)

We get asked questions about food trials a lot.  Since most people are not familiar with FPIES, it is not surprising there are many questions.  Of course, before her diagnosis, I knew nothing about it either.  Thankfully, I/we have been able to learn a lot in the past few months!

Since there is no blood/skin test for FPIES like there is for IgE (traditional) allergies, it all has to be done by trial and error.  So far, Myra's most noticeable symptoms have been vomiting and sleep disturbance (PS-I hate calling it that because it's such a nice little way to describe the HORRIFIC MISERY-for real- that happened in two different installments before connecting the dots to FPIES), our trials are focused on those two symptoms.  We do look for other things like rashes, gas (like bad, painful, room clearing gas), other pain symptoms (banging her head on her crib, forceful scratching of her face, etc.), but those are usually secondary to the first two symptoms. Remember, FPIES=Food Protein Induced Enterocolitis Syndrome, so the pain she has is, as far as we know, the same as a colitis flare up, but in her entire digestive tract.  I know people with colitis and thinking about my tiny kiddo suffering through that same pain makes me so sad!  Click here for more info about her symptoms.

We created our trial system ourselves after talking with Myra's allergist and some other FPIES parents I trust.  Just like with any other topic, there is a lot of information on the internet, some of it good, some of it bad, some that fits with your priorities and values, some that doesn't.  So, based on the information we gathered and Myra's symptoms specifically, we created what we think will work best for us.  The overall timeline of two weeks and starting in the morning at first was suggested by her allergist and we took it from there.  Thankfully we have had more passes than fails (almost all passes, only fails have been "questionable" and nothing "major") since starting official FPIES food trials, but once we have a better idea of what her fail pattern looks like, we will hopefully be able to shorten the trial a bit.  For now, we are playing it safe.  It's working and we're chugging right along, so we're fine with it being a bit on the long side (two weeks when we could maybe get away with one week).

For those of you who get lost in my ramblings, the main points of the trial are: start on a day we are best able to monitor her for a few days, start small and gradually increase, start in the morning, take a break in the trial, make it long enough to hopefully see both acute (vomiting, diarrhea) and chronic reactions (things like sleep disturbance/pain). 

Myra goes to daycare once per week on Wednesdays.  So, we always start trials on Thursdays.  That gives me/us the most time to be with her 24/7 at the beginning of a trial to see how she is doing.  If for some reason we can't start a trial on a Thursday (illness, plans that might really throw her off and confuse symptoms, etc.), we wait until the next Thursday.  Better safe than sorry! Especially after our very confusing sickness after her very first day at daycare.

On day one, we give her a very small amount of the new food, the equivalent of about 1 teaspoon, right away in the morning.  FPIES is a delayed reaction allergy of the gut, meaning the acute reactions (vomiting for Myra) don't happen for 2+ hours (usually about 6 hours for us) after ingestion.  If a reaction is going to happen, we would rather it happen in the early afternoon than the middle of the night.  On at least one occasion (pre-diagnosis), Myra was vomiting in her crib for who knows how long before we realized it-it was smelly and disgusting and we felt terrible for her.  So, on day one of blueberries, I just gave her 2-3 blueberries.  For potatoes, 2 baby spoonfuls of her safe mashed potatoes recipe.  The rest of the day, she just gets safe foods and her formula.  Day two: about 2 teaspoons in the morning.  Day three: about 3 teaspoons in the morning.  If there are no major concerns in the first few days, we start to get a little more liberal with the amounts.  For us,  during those first few days we are mostly watching for vomiting.  It is unlikely we would notice the sleep issues so early as the chronic reactions tend to take a bit more time to build up.  And, of course, the vomiting could happen at anytime during the trial, not just right away, but we want to increase the amounts in such a way that would actually show us those chronic reactions at some point during the trial.  Anyway, on day four, we will usually just let her have as much as she would like in the morning (within reason, she would have eaten a whole container of blueberries if I let her!).  If that goes okay, we add a little bit with lunch for a couple days.  If there are no big concerns by day 6-7, we give her as much as we can for breakfast, lunch, and supper.  [If we end up with a vomiting reaction fail at some point, we will definitely reevaluate our trial set up based on when the vomiting occurred.]

Curveball, some babies do fine on a food as long as they are fed that food consistently.  If they take a break from it, they may have a reaction upon reintroduction.  Not a big deal when they're only eating four foods anyway, but once they more safe foods (hooray!) it's impossible to feed them all of their safe foods every day or two.  So, we made that a part of our food trial.  Day 8-10 is a break from the trial food and she just gets her safe foods.  On day 11, we start the food again, but only in the morning.  We aren't quite so conservative with the amount, but still try to keep it pretty small that first day after the break.  If day 11 goes fine, we're just go big for days 12-14 in hopes we're in the clear for the barfing and just hoping to see if she's having pain (presumably the cause for the sleep disturbance). 

If all goes well after day 14, we call it a pass and start over with another food the next day!  For the time being, we will be constantly trialing foods unless we have a good reason not to do so since her diet is so limited. 

Curveball number two: making sure Myra actually eats the food.  So far that hasn't been terribly difficult, but our current trial (pork) started out a little tricky.  I cooked ham steak in the crock pot with a can of peaches.  Day one went fine, but day two she was not interested.  With all this drama surrounding food, we try so hard to make eating fun, because it should be fun.  However, during a trial I need to make sure she actually eats enough of the food for it to count.  Myra has recently decided she is too cool for pureed food, so hiding stuff has become a little more challenging if she won't just eat it plain.  When she wouldn't eat the pork, I pureed it with peaches-refused.  I made it into a smoothie with a TON of blueberries and I think she ate enough for it to count, but I knew we'd have to try something different the next day.  She loves her crunchy CheeChas and freeze dried peaches and blueberries, so we decided to switch to bacon (still pork).  She wasn't so sure at first, but by today (day 3 of bacon, day 5 of pork in general) she was having fun with it.  She ate some on her own at first, then wanted to feed it to me.  So we took turns feeding each other bacon (sometimes being an FPIES mama is HARD, but sometimes you get to have a baby feed you bacon!) and she HAD FUN EATING!  We all take things for granted every day, myself included, but watching my baby (toddler, I guess...) enjoy eating new foods is not one of those things.  Fingers crossed for another successful food trial!

As for how we keep track of all of this, I made a Google form about a month ago.  We can access it from any computer and have a shortcut for it on both of our phones and my iPad.  We fill it out throughout the day with the following information: how many times she woke the night prior (frequent night wakings as one of the chronic symptoms), which day of the current food trial it is, how long her nap was (short/no naps=same idea with the sleep disturbance), how many ounces of formula she drank (need this for WIC/insurance to get formula covered), what she ate (obviously most important for the food being trialed, but eventually we will meet with a nutritionist who will want to get a good picture of her general diet and, graphic: helps us pinpoint if food is going through her system too quickly=diarrhea/digestion problems), description of her bowel movements (oh, joy), meds given/dose (if we're suspecting teething causing symptoms or to see if she's reacting to a medicine), height/weight when checked, temperature when checked, noting any vomiting, diarrhea, face scratching, hiccups (some people say they notice those with fails, not here so far), whining/crying out during sleep, audible farts (they're loud and not normal!).  We also have a box for when we open a new can of formula (so we can see how long they last us) and a section for general notes.  Then Google puts it all onto a nice spreadsheet for us (TREVOR LOVES SPREADSHEETS! It's a sickness.) so we can access it if/when we need it.  It sounds intense, but it really takes about 10 seconds after a diaper change/nap/whatever to quickly enter it and hit submit.  We used to have a notebook that went everywhere with us, but that got old quickly and, honestly, we only need to look at this if we're trying to figure out a fail pattern, making sense of an illness (the temp tracking has been helpful when Myra was sick a few weeks ago), or "reporting" her formula intake to WIC/insurance.  Out of sight, out of mind, less clutter.

For those of you reading this and thinking, "holy cow. that is nuts. I couldn't pay that much attention to food amounts, symptoms, everything." You're right, it is nuts.  Doing all this and being paranoid any time food is around makes me feel like a crazy helicopter mom, but we have no choice.  The alternative is messing with Myra's health, lost sleep for all of us, major stress for all of us, confusion (did she get a crumb somewhere? was is it the pork?), not worth it.

I hope that helps make sense of our crazy food trials!  Fingers crossed we don't have any fails, but if we do, I will be sure to update with how that affects our trials.  Because failure is still progress, right? ;)

Saturday, March 22, 2014


Short post tonight. I know I will inevitably post the stressful stuff relating to Myra's FPIES, so I will try to post the good news, too.

Last week we finished a two week trial of blueberries. Myra loved every fiber filled, blue staining bite and no issues! Other than some very blue diapers, that is.  In fact, she slept 13 hours straight on the last night of the trial.  Hooray for another safe food!

 Signing for more!

First smoothie!

Monday, March 17, 2014

Causes: Women's History Month.

I have been very excited to both read and publish this post.  I have spent the last 10 years involved in the feminist movement in some capacity or another, so this is a cause very near and dear to me.  I know so many women, some very close to me, who have been affected by violence, oppression, and privilege (or lack thereof).  Actually, all women have been affected in one way or another by at least one of those things.  I am so very grateful to my friend Nikki for writing this Causes series guest post for Women's History Month and I loved reading what she had to say.  This stuff is real and it is important; it matters.  Note: I am often reminded there is some confusion around the word "feminism;" while there are many definitions out there, Merriam-Webster simply defines it as: "1) the belief that men and women should have equal rights and opportunities and 2) organized activity in support of women's rights and interests."

Like every instructor worth her salt, I ask my Introduction to Women’s Studies students to evaluate the course at the end of every semester. Specifically, I ask them: what texts/content should I keep in the next iteration of the class and what should I cut? Without fail, two items come up as “keepers,” semester after semester: Iron Jawed Angels and the “Violence Against Women” unit.

In case you haven’t seen it, Iron Jawed Angels is a 2004 film by Katja von Garnier, starring Hilary Swank, Frances O'Connor, Julia Ormond, and Anjelica Huston. It portrays - with a fairly good degree of accuracy - the later stages of the women’s suffrage movement in the United States. 

My students love this film. First, they love it because it is a good film and it does what all really good films do: it makes you feel something. My students like these women; von Garnier makes these suffragists relatable to college-age men and women, which is no easy feat! Second, this film surprises my students, because the history this film portrays is a history they don’t know. Why don’t we know this history? they ask me. Good question. This film forces my students to wrangle with several arguments feminists make about traditional history: 1) that the history we get is inadequate as it fails to portray women’s lives with any degree of depth or complexity, and 2) that the history we get is biased in that it fails to tell the truth about women’s lives and women’s work.

Women’s suffrage is probably one of the few bits of “women’s history” most of us do get in school, of course. If your education was anything like mine, you were told a very abridged story that focused on a couple of figures – Susan B. Anthony and Elizabeth Cady Stanton - and ended with the notion that American women were given the right to vote in 1920 as a “thank you” for their patriotic efforts in World War I. (If your elementary, middle, or high school education was more robust than this I would love to hear about it in the comments!)

The unabridged story of the fight for women’s suffrage is much more interesting, rich, and complicated than that brief blurb in our elementary history textbooks. Establishing women’s right to vote was a fight that took over 70 years. Suffragists’ strategies were wide-ranging: from staging elaborate protests, pickets, and marches, to lobbying politicians. They were assaulted in public, verbally and physically. Suffragists were arrested on trumped up charges and imprisoned. Their personal and private lives suffered as a result of their political activism, and their refusal to conform to traditional women’s roles and behavior came at great personal cost. Suffragists disagreed with one another; they were divided over strategy and around issues of race and class. Suffragists were white and African-American, women and men. Suffragists were brave. Determined. Intelligent. Capable. Flawed. Suffragists were heroic. So why don’t we – as a nation - see them this way: as heroes who changed the face of citizenship in the United States by enfranchising 50% of the population?

Can’t women be heroes too?

(Proof that we don’t treat our female political game-changers the same way we view our men: Thecontroversy over a statue of three suffragists in Washington D.C. can be readhere. The statue was considered “too ugly” and “lacking in historical merit” to hold a place in the Rotunda. Can you imagine people removing Lincoln’s statue from the Lincoln Memorial because it/he was too ugly?)

To reduce the story of suffrage to a story of a few great ladies who politely asked for a thing until they got it… a story of well-meaning men who, when they knew better, did better, is to do women’s history – and to do women - a great disservice. It is also a lie. As Martin Luther King, Jr. stated: “Freedom is never voluntarily given by the oppressor; it must be demanded by the oppressed" (1963).

It matters whether our history textbooks say that women were given the right to vote in 1920 by kind, well-meaning men, or whether the textbooks say women fought and won the right to vote in 1920 in spite of decades of intense social and political opposition. It matters whether Women’s History month is observed in our schools with all due diligence and a robust curriculum or whether it is a few photos on a wall and a lot of lip service. It matters because the histories we are teaching our children send them clear messages about what women are (and are not) capable of, as well as conveying ideas about women’s value:

Are our girls capable of being our nation’s soldiers, heroes, innovators, visionaries, political leaders, inciters, and myth-makers? Or are they capable “only” of being the girlfriends, wives, and mothers of the nation’s soldiers, heroes, innovators, visionaries, political leaders, inciters, and myth-makers?

Are women valued in our culture? Do we recognize, memorialize, and compensate women’s contributions to our families, our communities, our economies, and our nation?

Let me be clear: there is, of course, nothing wrong with being “only” a girlfriend, wife, and mother. These are roles with immense social, economic, and political value. Fact: the nation would cease to function if women stopped performing these roles. The problem is that we tell women and girls that these are the most important roles they can have and then we, as a society, do not support women in these roles. For example: if we truly valued the mothering work women do, wouldn’t mandatory paid maternity leave exist in the US by now? Comparing Paid Maternity Leave Around the World.

Feminists argue that the inadequate and inaccurate stories we tell – in our media, in our popular discourse, in our histories, in our national holidays and memorials – are stories which teach our children that women are not capable of anything truly interesting and noteworthy, and what they are capable of (mothering and other forms of care work) holds little value in the grand scheme of things. This must change.

It is not surprising to me that the unit on violence against women also deeply affects my intro students. If they are surprised and bewildered by what they don’t know of US women’s history, they are shocked and infuriated to learn of the rates of violence against women in the US and our society’s inability (unwillingness?) to affect real change in this area. How are these numbers possible? they ask me.

(From this essay.)

How can our justice system fail women so badly? they want to know.
 (From RAINN.)

It’s my job to help them to see the connections. There is a connection to be made here, between the misrepresentations of history, women’s low social worth, and violence against women. When women and girls are not seen as agents and individuals in their own right (when they are seen solely as wives and mothers, beings whose identity revolves around their relationship to someone else), and when their contributions to social, political, and economic life are de-valued, it is easier to do violence to them. When women don’t matter – when their lives are not important enough to make it into our histories, our national myths, our educational system – then it is easier to hurt them and easier to get away with hurting them. These seemingly disparate issues are connected.

Women’s history, women’s stories, women’s lives matter. This month and every month. 

Written by: Nikki Frances -- Feminist mama to one small girl, hoping to change the world for her. I have an MA in Women’s Studies and am currently an instructor of Gender and Women’s Studies at Minnesota State University Mankato.

Saturday, March 8, 2014

Washington D.C. 2014.

I put 2014 because I have high hopes I will get back to D.C. in the next few years.  I've been there many times and I love it.  My trip last week was for a work conference.  (For those who don't know, I am working part time for Steele County Transitional Housing doing work very similar to my old job.  In fact, I am working under the exact same grant, just a different employer and part time.) I went with a co-worker/friend, Keithia, which was a bonus.  Despite not just one, but two canceled flights on our way out there, we were able to do some sight seeing on our very minimal free time.

We were initially scheduled to leave Monday morning, get there Monday afternoon, and have time to fart around D.C. before our Tuesday and Wednesday conference.  Our flight was canceled for Monday morning due to severe winter weather on the East coast, so we were set for a Monday late afternoon flight.  When we were just about to the airport, I got a call notifying me that flight had been canceled, too.  We got on another flight for Tuesday morning leaving at 5:55am which was great, meant we would miss our scheduled White House tour!  These days, those tours require a written request via your local legislator and, if approved, a specific date and time is set.  Needless to say, we were very disappointed we had to miss it!

We landed Tuesday morning then headed straight to our hotel, also where the conference was being held.  We checked in and went right down to the training...exhausted.  Tuesday was a loooooong day, so we didn't do anything exciting unless you count lunch at Kramerbooks (jerk chicken tacos).  I ordered some mushroom and spinach flatbread and lobster bisque (no soup for you!) from room service and went to bed very early.

Wednesday was much better.  The training was great, lunch was great (BGR The Burger Joint, original burger with swiss cheese and grilled pineapple-yum!).  We walked around for about an hour looking at the neighborhoods, counting Starbucks locations.

"All Are Welcome."
My mom's cousin, Christy, lives fairly close in Virginia, so she drove into the city to meet us for dinner.  We went to Mourayo for some Greek cuisine (Ravioli Vytina).  It was delicious, but I've had Greek a few times and was hoping the menu would include Saganaki.  Anyway, it was great to see a familiar face/visit with extended family while on the trip.

Our flight home left at 2:10pm on Thursday, so we hoped to get to the airport around 12:10 knowing that left us some wiggle room.  We didn't check any luggage because it's just a pain in the butt, so we did our sightseeing with our carry on luggage.  We knew this would end up happening, but I did not plan ahead and bring a backpack.  Rather, I had a small duffle bag with one shoulder strap-ouch.  We headed out about 8:30, stopped for coffee then on to the Metro. This was a busy time of day to be using public transportation, so we were pretty cramped, luckily we didn't have far to go. 

Here begins the marathon of sightseeing... (I'm not necessarily going to include the 'best' photos that really show each monument since I have over 100 photos and you can find aerial shots all over the interwebz, just going to show my favorites. Edit: who am I kidding, most of the photos will inevitably end up on here.)  For those of you familiar with DC, or at least the National Mall part of DC, you'll notice we did some zig-zagging.  It was all in the name of our plans to see as much as we could squeeze in and our subsequently evolving transportation plans.

We were still sad about our tour, so we stopped by for a photo.
One of the many great quotations from the National WWII Memorial.

My favorite D.C. monument, the Lincoln Memorial.

Saying the Lincoln Memorial is my favorite is kind of unfair, because they're all special in their own way.  This is from the Korean War Veterans Memorial and it has always seemed so eerie to me, which is exactly what makes it so memorable.  It just seems the most real out of them all.

KWVM from the front.
Vietnam Veterans Memorial

Remember, our goal was to be at the airport at 12:10.  At this point, it was 11:30 and we were a short walk and quick metro ride away from the airport.  I'm cringing as I'm typing this, but after all the times I have been to Washington D.C., I had still never been to Arlington National Cemetery.  So, we decided to go for it.  It was my one "must see" on the trip and we were so close.  I took a friend's advice and used the Uber app to call a cab (super slick by the way) and we were on our way.  We got there at 11:40 and headed straight for the visitor center.  We were asked if we were trying to find anything in specific and I quickly said, "we have to leave for the airport in 20 minutes (and that was a stretch...), what will that get us?"  JFK's gravesite was a 10 minute walk, so 20 there and back, follow the signs.  You got it, lady.

Bobby Kennedy's grave site.  I took this photo because of the coins.
JFK & family's grave site with the eternal flame.
Somehow I never knew they had a stillborn daughter, so sad.

OK, so I was literally walking distance from the Tomb of the Unknown Soldier and the clock was majorly ticking on us getting to the airport in time.  We still had to walk to the metro station (right outside the cemetery entrance, but still), wait for it to arrive, and get to the airport.  We were already walking as quickly as we could while still being respectful of the fact that we were in a cemetery, a very important one at that.  But I just couldn't stand the thought of not seeing it yet being so close.  So, I said let's go for it.  We were still carrying our carry-on luggage and it had been a few hours by now with quite a bit of walking.  We followed the signs and as we were getting closer I heard the clock strike noon.  Part of me felt like Cinderella and the other part of me was desperately hoping the Changing of the Guard was about to happen and we would be there to see it.  I really didn't want to get my hopes up since we had the smallest window of time possible.

 As luck would have it, we walked up to the Tomb of the Unknown Soldier just as they were starting the Changing of the Guard (click for a YouTube video).  I can't even attempt to describe the precision those men have.  Unreal.

And just like that we had to skeedaddle right outta there.  I wish we could have really taken our time there and explored more.  We only saw a fraction of the cemetery.  I took photos of graves and plan to look up some of the names to see what I can find.  I was surprised to see so many headstones with multiple wars listed - I guess I never realized so many who made it through one war went on to serve in more.

I hate being late, but there was one final memorial I wanted to see on our way to the metro.  (It really was on our way, I pinky swear.)  This one should be important to anyone, but especially since I know some pretty amazing women who are serving/have served (you know who you are), I had to see it.

And that officially ended our DC in a day (half a day?) tour!  Keithia joked that we should shoot for the Amazing Race next...we totally should, but no thanks.

Friday, March 7, 2014

FPIES: Potato Bites Recipe.

Although Myra's diet is very limited due to her FPIES, we are able to make her a variety of foods using substitutions with her safe foods.  These potato bites are great finger foods, very similar to tater tots.  As Myra gains more safe foods, we can add them to this recipe (herbs, spinach, etc.) to change the flavor.  This basic recipe is using only potato, coconut, and salt.

First, you'll need to make mashed potatoes.  I have a recipe (click here) using only potatoes, coconut, and salt.

Line a cookie sheet with parchment paper (my favorite FPIES cooking tip-non stick with no oils or sprays!).  Put the mashed potatoes in little balls, about the size of a gum drop, onto the lined cookie sheet.  Bake at 400 degrees Fahrenheit for about 25 minutes (I usually check at 20 minutes then in 5 minute increments) until they have browned and the outside is crispy.  Let cool and enjoy!  Myra loves these since she has recently given up being spoon fed and insists on feeding herself.  They're great with any other safes added into the mashed potatoes (spinach, meats, even fruits! FPIES kiddos, or any kiddos, don't seem to mind "weird" food combinations).

FPIES: Mashed Potatoes Recipe.

Although Myra's diet is very limited due to her FPIES, we are able to make her a variety of foods using substitutions with her safe foods.  I have literally slaved over a hot stove tweaking mashed potato recipes and this is the one that works best for us.  As Myra gains more safe foods, we can add them to this recipe (herbs, spinach, etc.) to change the flavor.  This basic recipe is using only potato, coconut, and salt.

6 medium potatoes (I use Yukon Gold because of the natural buttery flavor.  They are often a bit smaller than other potatoes, so I usually use 7 or 8)
2/3 cup light coconut milk (Trader Joe's canned, only ingredients are coconut and water)
1/4 cup coconut oil, melted (or  sometimes 1/3 cup coconut oil)
1/2 tsp salt

Cut potatoes into fourths or sixths, place into pot of water and boil for 20-25 minutes until soft.  Drain and place into a bowl with the other ingredients.  Beat with remaining ingredients until potatoes reach desired consistency.  I leave skins on the potatoes.  If using for potato bites (recipe to follow), smoother consistency may work better.  If using as mashed potatoes alone, a variety of smooth and lumpy potatoes can be good for texture variety.  Feel free to remove some when they are fairly lumpy then continue to beat what remains for a variety.  These freeze well.  I make this large batch and freeze into smaller containers.  I also use this to make Myra's Potato Bites.

Tuesday, March 4, 2014

Causes: Presidential Pardon for Dakota 38 & 2.

It seemed appropriate to put this into my Causes series.  This petition needs to reach 100,000 signatures by the end of March 2014.  Please sign and share liberally!

From the petition site:

We petition the Obama Administration to:

Grant an immediate posthumous Presidential Pardon for the Dakota 38 & 2. The trials were an embarrassment to our country.

In 1862 nearly 400 Dakota men were found guilty of capital crimes. The trials were a mockery of our justice system.

1)The trials lasted on average between 3&5 minutes each.
2)There were no defense attorneys
3)No defense was allowed
4)The trials were in English which most of the men did not speak.

Lincoln commuted most of the sentences but had two clerks draw up a list for hanging to appease the frontier. 38 Dakota were hung the day after Christmas 1862 in Mankato. The largest mass execution in US history. Two were hung later.
Pardons are usually for the living however there is a president to right historical wrongs.
The Dakota deserve to know their ancestors were not criminals, but men fighting to protect their women, children and their way of life. Calling them criminals is just wrong.

Click here for background information.

More background information.

Click here to go to the website where you can sign the petition.

Saturday, March 1, 2014

Causes: Rare Disease Day, Chiari Malformation and Syringomyelia.

One more Causes series post in honor of Rare Disease Day.  I know Rare Disease Day was yesterday, but real life happens and, well, this post is going up today. :) I've known Stacy for many years and didn't know many of the details about her condition or the surgery at the time, so I was glad (and blown away!) to read this myself and I'm grateful for the opportunity to share, too.

Too Much Brain to Contain!

Living with Arnold Chiari Malformation and Syringomyelia
             Disclaimer: This blog post got a little out of hand! I have never written down my experience before, so I got a little carried away while remembering all of the events and emotions!

Growing up, I was a perfectly normal, healthy kid. In March of 2007, at the age of 23, I got married and we had our first child in June of 2008. I attempted to do a vaginal delivery, but because she was so big, we had to do a cesarean section. When she was 6 months old, we found out we were pregnant with our second child, who was born September 2009, also via c-section. In December of that year, I became nauseous all the time….so naturally, I thought I was pregnant again and took a whole bunch of pregnancy tests, all of which were negative. After having a pregnancy “scare”, we decided that we wanted to wait awhile to get pregnant again, so I got an IUD.
The nausea never went away, and other things started happening as well, including horrible headaches that came on suddenly, like when I would cough, sneeze, or just turn my head the wrong way. The headaches were nothing like I had ever experienced before. The pain would start at the base of my head and radiate up through my head onto my forehead, just above my eye. I would also get blurred vision, but just in the eye that the pain was above. At first, I didn’t know what to make of all this pain. Maybe it was from sleep deprivation? (I did have an 18-month-old and a colicky 3-month-old.) But after talking with several people, there seemed to be the consensus that I was having migraines. I then made an appointment with my family doctor. She told me it sounded like I was indeed having oracle migraines (migraines that affect your vision), so she prescribed me some pills. Needless to say, those pills didn’t work, so she decided to take a different approach. She then suggested that I keep a “headache journal.” I was to write down pretty much my whole day: how much sleep I was getting, everything I was eating, how much exercise I was getting, and every time a headache would start and stop. The purpose of the journal was to find my headache triggers and to see how often I was getting these headaches. It didn’t take very long before I gave up on the whole journal idea because I was having these headaches daily and there didn’t seem to be a common trigger. My doctor seemed stumped, so she just prescribed me a different pill to take and told me “we’re going to go through and try all of the different medications first before I have you get an MRI because the chances of it being anything that an MRI would detect are very slim.” Well, I immediately decided I wanted to get a second opinion so I made an appointment with a different family doctor.
Oh wow! After being in the exam room with this new doctor for only a few minutes, I felt like I may finally get some answers! She actually seemed to be listening to me! After telling her all of my symptoms, she told me “well those don’t sound like migraines at all, so I am not even going to mess around with medication. The first thing I am going to do is to order you an MRI for tomorrow. The chances of it being found on there are very slim, but at least we can start ruling some stuff out.”
The next day, I went in and had an MRI done of my brain. Oh am I ever glad that my new doctor talked me into prescription Xanax for this scan! If you are even the least bit claustrophobic, this is not a good time! I had had an MRI before, but it was of my abdomen when I was 7 months pregnant with our first child because of a possible appendicitis, but that was a piece of cake compared to this. It is completely different when you have it done on your brain. Your head gets immobilized inside of a “helmet/mask” that completely encloses your entire head! I was visibly distraught about the situation, so the technician was very helpful and offered to cover my eyes with a towel and comfort me by continuously reminding me to not open my eyes. I couldn’t take it anymore, so when the hour long scan was only minutes away from being complete, I did peak open my eyes and started freaking out! “You opened your eyes, didn’t you?” “Yes I did! Get me out of here!” I can laugh about it now, but it wasn’t funny at the time! After the MRI was done, the technician told me my doctor would follow up with me when they got the results; could take up to a couple days. So was I ever surprised when I got a call from my doctor only a few hours later!       
                I received the phone call on April 28, 2010. Even though it was almost 4 years ago, I still remember the conversation as though it just happened. It went as follows:
We got the results back from your MRI. I want you to get a pen and write this down. Arnold Chiari Malformation Type 1. I am not going to explain to you what it is because as soon as we get off the phone, you are going to google it anyway. I am referring you to a neurosurgeon in Rochester. They will be calling you soon to set up an appointment. If you have any questions, please don’t hesitate to call me.”
                I immediately got on the computer and got as much information as I could, but it just left me with even more questions. How big was my herniation? Would I need surgery? Am I going to die? I have two little kids who need me; I don’t have time for this!
                Now, after having researched this disorder for several years, I feel like a walking encyclopedia on the topic. In a nutshell, the back of my skull is too small or too misshaped to hold the back part of my brain, the cerebellum. So, my cerebellar tonsils protrude out of my skull and down into my spinal canal. This is bad for several reasons. First, your entire brain is supposed to be inside of your skull so it can be completely protected. Second, it is causing the flow of CSF (spinal fluid) to be disrupted and potentially fully blocked, which would eventually leave me paralyzed. Since the disorder is very rare, there is very little conclusive research and studies done on it. First of all, it is still unknown as to whether Chiari is congenital (you are born with it) or if it is acquired (e.g. car accident, or some studies say during pregnancy). Second, some people may have a 0 cm herniation and show a lot of severe symptoms, while others may have a 20 cm herniation and show very little mild symptoms.
                So I had my first appointment at the Mayo clinic 2 weeks later (felt like the longest 2 weeks of my life!) with my neurologist and my neurosurgeon. First, my neurologist did a basic neurological work-up on me, reviewed my MRI results, and answered all of my questions (I brought a notebook full of them). Then, I met with my neurosurgeon and his nurse (who I would have to say is a God send; I called and talked to her almost daily from the time of my diagnosis until after my surgeries). He went over the pros and cons of having surgery and what it would all entail. Oh and I almost forgot, my family doctor forgot to mention to me that the MRI results showed that I also had Syringomyelia (which is a syrinx, or fluid filled pocket, in my spinal canal), but I found out while talking with my Neurosurgeon’s nurse. This is how it was broken down to me: Chiari is a progressive disorder. My herniation may stay the same, or it may get longer, but it will NOT retrieve on its own without some sort of intervention (meaning sugery). Also, there is no way of knowing how fast it will progress, especially since my symptoms all just “appeared.” Was I born with this condition and the pregnancies just brought on the symptoms or increased the herniation? I could stay this way forever, or I could be paralyzed in two weeks. The same is to be said about my syrinx. It will not get better without intervention. If I only had the syrinx without having Chiari as well, I could just get a shunt put in to drain it. But since I also had Chiari, if I didn’t “fix” that, the syrinx would come right back. The size of my syrinx was one of the larger ones my doctors had ever seen and they were both surprised that I could still even walk because it was so wide that it almost completely blocked my CSF flow. The best way that having Syringomyelia and Chiari both was ever described to me was: it’s like taking a garden hose and putting your hand over the opening to stop the water from flowing out. Eventually the sides are going to expand to compensate for all the extra built up pressure. This is what was happening inside of my spinal canal.

                 Choosing whether or not to have surgery and where/when to have it done was one of the more difficult decisions I have had in life. The surgery was going to consist of a craniectomy (using a high-powered saw to cut out a section of my skull), duraplasty (removing the outer layer of my brain), and a laminectomy (shaving off a part of one of my vertebra).  Also, I would have to decide if I wanted to use a bovine patch (patch of cow skin), or have a fasciotomy (use my own “skin” material that would be harvested from my thigh) to replace the dura they were removing. Sound scary and painful? I was freaking out! But my team of doctors reassured me that this was indeed a major surgery, but as far as brain surgeries go, it would be a fairly simple one. Such difficult decisions and oh man did I already have a headache! (haha a little Chiari humor) So I knew I would definitely have to have the surgeries, but then what patch would I want? My neurosurgeon gave me pros and cons for both. Bovine patch is extremely similar to using your own material, it is painless for you, and the risk of infection or CSF leak is less than 1% each. Using my own material would be extremely painful on my thigh and leave me with a huge scar, but it would be really “flexible” material and there is even less risk for infection or CSF leak. Which one would you choose? I went with a bovine patch. Next, where should I have the surgery at? Should I do it at the Mayo Clinic? It is less than an hour away from home and they are one of the top Hospitals in the world. My team of doctors said they do about one Chiari surgery a month, so they are pretty well experienced in it, but obviously not as much as the clinics that specialize in Chiari. So that leads me to the other options. There are a few Chiari Institutes in the United States; Wisconsin, Colorado, and New Jersey. Should I visit one of them, or should I just utilize the amazing Mayo Clinic that is practically at my back door? The major factor that helped me make this decision was the fact that I had two small children (an almost 2 year old and a 9 month old) and it would just be easier for everyone if I stayed closer to home.

                Mayo Clinic called me the next day to set up my surgery. They told me they happened to have an opening and could get me in the next week, June 10th, which was my daughter’s 2nd birthday. Even though I know they were trying to accommodate me, I told them that date wouldn’t work for me…mostly because I was scared to death about the surgery, I honestly felt like I didn’t know if I would make it through the surgery or what my life would be like afterwards, so I wanted to enjoy one last birthday with my little girl. The next availability was June 21st, so I took that one.

                My anxiety level leading up to surgery day was through the roof! I was so nervous about the actual surgery….I can still hear my neurosurgeon’s voice saying “we just take a really high powered saw to cut open your skull…” And then there was recovery time. I was to plan on being in the hospital for a few days and then pretty much on bed rest for a few weeks following that and then back to normal activity in a little over a month. That all sounds fine and dandy, but what about my kids?! Up until this point, I could count on one hand how many times I was without them overnight! Luckily, my father-in-law was able to take off work and the kids would be able to stay with him and my mother-in-law while all of this was going on. But that was just the logistics of it. What if something went wrong during the surgery? What if I never woke up? What if the surgery wasn’t successful and I became paralyzed anyway? I just had to keep telling myself that I was taking more of a risk by not having the surgery that I was by having it.

                Surgery day finally came and much of this time in my life is a big blur. I don’t remember a lot of it because of all the pain medication I was on and because of all the complications. I remember going to the hospital really early in the morning and laying on a gurney in the pre-op room with about a dozen other people all waiting for various surgeries. This part sucked because I was with a bunch of people I didn’t know and I had already said my goodbyes to my family, so I felt like I was left all alone with my thoughts for which felt like an eternity, but was probably only about an hour. I then remember getting wheeled back to the operating room….my next memory is of waking up in the ICU in the worst pain of my entire life! I don’t really remember much from that day or the couple days following it. I was told by my best friend, who sat by my bed for hours on end, that when I woke up I couldn’t speak, I couldn’t open my eyes, even hearing the sound of other people’s voices was painful for me, so the nurses wouldn’t turn on any of the lights or let anyone even talk in my room. I do remember that the pain inside my head was unbearable for the whole week I was in the hospital (yes, a couple days turned into one week, and the only reason they sent me home was because they said my insurance would only cover one week). Do you know the burning feeling you get in your nose when you are swimming and you get water up it? Well, that is what it felt like constantly inside my head! My doctor told me that a little CSF (very acidic) must have come out during the surgery so I would need to stay in an inclined position (sleep sitting up) to allow it to drain out of my head. Well that helped a little with the burning pain, but I still wasn’t able see straight, I was having double and blurred vision. It was so bad that I never even once turned the tv on in my room that entire week. I also was having a lot of trouble walking. For the first couple days that I was allowed to try to walk, I had to use a walker and my husband would walk a lap with me around the floor, if I even made it that far. Needless to say, even with all of the drugs they were giving me, I was still in excruciating pain! I had a CT Scan done, but it didn’t show anything else was wrong, so the doctors sent me home saying they had never seen anyone in this much pain before but they didn’t know what was wrong with me and insurance would only allow me to stay for one week following the surgery. In a nutshell, I felt like they were just telling me I needed to suck it up!
The day after surgery

Day two

Day two

A couple days after surgery

About a week after surgery

                After leaving the hospital, instead of going home to be with my husband and children, I went to stay with my in-laws while they stayed at home. This was because I was in so much pain that it was not a good idea for me to be around two little kids. However they would come over for very short time periods to visit me (that was always the highlight of my day and the only thing that kept me going.) Again, I don’t really remember much about this time frame because I was in so much pain and on so many medications. I do remember a couple days after I got there that I was throwing up so much that I ended up going into the emergency room in my hometown and the doctor that was attending to me didn’t even know what Arnold Chiari was! He kept calling it Budd Chiari. When I would correct him, he insisted to me that they were the same thing.  (I didn’t know what Budd Chiari was until about a month later when I googled it and found out that is a condition that affects your abdomen…completely different part of the body!) They just pumped me full of fluids and sent me home. A couple days after that, I was in even more pain (I didn’t think that was even possible) where my head, neck and shoulders all felt like they were in a vice grip. We didn’t even bother going to the local hospital, we just went straight over to emergency room in Rochester. There they did some tests, put fluids in me and sent me home because they couldn’t find anything wrong with me. And they also told my husband (when he wasn’t by me) that I just had brain surgery and I was going to be in some pain, but there wasn’t anything they could find wrong with me and I needed to just deal with it. Needless to say, he was not pleased by this! He could see that his wife was in horrific pain and there definitely was something wrong and it just seemed like no one cared! Another day or two went by and I remember this next part very vividly. I was sitting outside on the back porch on a lawn chair. It was one of my first times being outside in a couple weeks. As I was sitting there, I felt a wet drop on the back of my neck. I turned to my husband (well not so much “turned” because I still couldn’t move my neck more than about an inch without screaming out in pain) and asked him if it had rained earlier because I think I just felt a drop of water fall off the edge of the roof and onto the back of my neck. He said it hadn’t. But then I felt it again. So I then felt the back of my neck with my hand and realized the back of my shirt was soaking wet around the collar. We immediately went inside and I sat at the kitchen table while he got a towel. We couldn’t figure out how I got all wet. The best thing I could come up with was that I had gotten some water in my incision while taking a shower and it was now coming out. Well that didn’t make a whole lot of sense because my incision was pretty well closed up by now and I didn’t really get it wet in the shower anyway, even though the doctor told me it was perfectly safe to do so. Well, over to Rochester we went again! This time, I brought a bath towel along on the ride and it was completely soaked by the time we got there. Once we were seen by a doctor in the emergency room, it didn’t take him long to figure out what was wrong with me! I knew right away that when he asked me when the last time I ate was, that I was not going to like the outcome. “Well, I am just waiting to see if we can get a surgical team in here yet tonight or if we are going to have to wait until tomorrow for the surgery.” This was on Friday night, July 2nd….not the most ideal time to try and get a neurosurgeon team called in for an emergency surgery!! Yes that is right, I was going to be having emergency brain surgery! That “stuff” that was making the back of my head wet…CSF…spinal fluid was actually coming out of my body! That isn’t supposed to happen! Normally when someone has a CSF leak, it leaks within their body, not all the way to the outside!! They were able to get a team together and I was wheeled back for surgery within about an hour, literally giving my parents just enough make the drive over and walk in my room and say goodbye to me as I was getting wheeled out. This time, I remember a little bit more of the operating room…I had had so many IV’s put in recently and was somewhat dehydrated that they had a very difficult time getting the bigger needle placed correctly. They tried both arms and wrists with no luck. Then there were about to try and stick the needle in my foot/ankle! What! You are going to put What Where?!?!? I started thrashing around so they couldn’t poke me down there…and then all I remember is hearing a voice say “we will just stick it in her jugular once she falls asleep”...and that is all I remember.

                I woke up in the ICU in a lot less pain than I was in previously. What? Just woke up from an emergency brain surgery and I feel better?! That’s right! I was still in pain, but not nearly as much as before. I knew that something was terribly wrong with me and I wasn’t just imagining it! The next day, the surgeon explained to me what was going on. I did indeed have a CSF leak and the bovine patch had caused an infection, so they removed the bovine and did a fasciotomy (made a long cut in my thigh to harvest a patch of the silvery matter that sits right above the muscle) to use to cover up my brain. He didn’t know what the infection was, but they would be running tests to figure it out and get me on the right antibiotics.  The next day was the 4th of July. It was a bittersweet day for me. On one hand, I was so happy to be alive and be on the road to recovery, but at the same time, I was so sad to be sitting in the hospital without my family. This is when my emotional breakdown began. Anyone that has spent any amount of time in the hospital can probably agree with me that it takes an emotional toll on you as well as physically. I remember sitting in one of the visiting rooms that night in my wheelchair (I couldn’t put any weight on my leg yet, so I was in a wheelchair for a few days), with a bunch of fellow patients and their families. I was on the neurological floor in the hospital, so there were a wide variety of people there with varying levels of problems. Most of the people were from different parts of the country that had traveled specifically to this hospital to receive treatment. This made me feel better about doing my surgeries here. But what I remember most is how warm and welcoming those other families were to me. They saw that I was all by myself because my husband had to leave to be home with our kids. But those families took me in as part of their own to watch the fireworks with them and even wheeled me back to my room when it was all done. As I’m sitting here writing this right now I am crying just remembering how good those people made me feel at a time when I needed it the most and the funny thing is that they will never know how much they meant to me.

                The next few days are all a big blur to me because I was severely sleep deprived and was hitting rock bottom emotionally. I am not a very spiritual person, but I found myself starting to talk to God. First I was questioning “why me? What did I do to deserve this?” Then I was asking him to just take me. Take me away from all of this pain and suffering. I couldn’t take it anymore. I was hooked up to an iv and being pumped with antibiotics about 23 hours a day. They still hadn’t figured out what exactly the infections were (yes 5 different infections to be exact), so they were giving me the most potent stuff they could to kill it all off. The medication they were giving me wasn’t even allowed to be in the sunlight, yet I was supposed to be pumping it in my body?! I remember every time there would be a new nurse and they would have to change out my empty iv bags and put the new ones up, they would just gawk at them and say they had heard of these drugs before, but they had never actually seen anyone use them. My veins kept collapsing from the constant flow of stuff going in them, so my iv had to be restarted many times and I kept getting poked for blood draws every couple of hours, which is why I was so exhausted. Finally they decided to start a PICC line, which was not fun to say the least. It was at about this point that my outlook on everything changed. I decided it wasn’t fair for God to take me. I had two children who needed me! It would be extremely selfish of me to leave them without a mother. No matter what would happen to me, I needed to make sure m y children were taken care of. I decided from that point on that I needed to fight a little bit harder.
A couple days after surgery #2

My leg a few days after surgery #2, where they harvested skin

                I was in the hospital for a week before being sent home, but this time was a little different. I was being sent home with my PICC line still in because I would need to take iv meds for another month to kill off the infections. I now had two options; go to a nursing home for a month, or get an in-home nurse….I chose the latter! I again went back to my in-laws house and between them, my mom, my aunt, my grandparents, and my husband, there was someone with me 24 hours a day. I was extremely ill at this point. I had lost so much weight that I was the size I was in Junior High. I did venture out of the house after a couple weeks, and went downtown to the local arts festival. While there, I saw a couple people I knew and the looks on their faces when the realized who I was made me not want to leave my house for a very long time. I didn’t even look like me anymore. My head was half shaved and I was literally just skin and bones, plus I had an iv hanging out of my arm. It was then that I was an emotional wreck again. I just wanted to go home…to my home…with my kids.

My husband started bringing me home for short visits, which started lifting my spirits. I remember sitting in our backyard on one of those visits, and the neighbor across the street walked over and had a conversation with me. He had had heart surgery the year before and it was like he could just read my mind before I even said anything about my talks with God and my emotional roller coaster. He doesn’t know this, but he really lifted my spirits that day. I was so glad to hear that I wasn’t the only one that had had these thoughts and feelings. Going through major surgeries and hospital stays does indeed take an emotional toll on a lot of people and they start to question everything in life. If I didn’t have my children, would I have fought so hard to get better? I hope the answer is yes. But it’s not like I physically “fought” but emotionally and mentally I did. It is really hard to explain to someone who hasn’t personally been through it. But I now understand in movies when someone is dying and their loved one is telling them to fight a little longer or to just let go…I get that now.

                Turns out, the major infection that I had was bacterial meningitis and it was floating around in my CSF and brain. A lot of people die from it or at least have lingering complications. A couple months later, at one of my follow-up MRI’s, I found out what my complication was. I now had acquired Hydrocephalus, which is where the ventricles in your brain (the chambers that hold your CSF) are enlarged and are pushing your brain outward toward your skull. All of the damage and brain cells it was killing off was irreversible. I would need to take measures to get this new issue resolved. The most common thing to do would be to surgically place a shunt from my ventricles into my stomach, so the excess fluid could drain out. My neurologist would normally recommend this surgery, but since I had had a history of my body rejecting foreign objects, he did not want to subject me to that unless absolutely necessary. So instead I had a lumbar puncture (a nice way of saying a spinal tap) to relieve some of the pressure in my brain. Again, this procedure is not one that I would recommend if you are looking to have a good time! The procedure itself wasn’t too bad, but the next couple of days were terrible! After another follow-up MRI to check on the hydrocephalus, it appeared as though the lumbar puncture had worked and my ventricles had gone back down to normal size.
                In the beginning of November, I ended up having another surgery, this time to correct the area where I had the fasciotomy. My thigh muscle herniated out of the space where they harvested skin, so the surgeon had to go back in and reclose the space. Sometimes when originally closing it up, they would use a synthetic patch to cover the area, but since my body seemed to reject foreign objects (ie the bovine patch), they decided not to use anything and allow for the body to sort of heal itself, which has always worked for the surgeon before. Well, obviously the surgeon didn’t know my history with luck and odds, because this was the first time this corrective surgery has ever been done at Mayo (at least to the knowledge of the two surgeons who performed it, and they needed two there because neither one had done anything like it before and they were unsure of what they would encounter when they opened me up). One of them even asked if he could use my story to write up an article in a medical journal! After this surgery, I was in the hospital again for a couple days.  I also had to start physical therapy to retrain myself how to walk. But I got to use a cool shiny pink cane to walk around with for a couple months (always try to look at the positives, right)!

                There are still many side effects from the surgery and there are things that I have had to change in my daily life that I can no longer do. I still have almost daily headaches, but now they range in severity and aren’t always migraine-like. I can no longer do activities that involve any bouncing or jumping because it “rattles” my brain too much and I get an instant headache and nausea. It is now extremely uncomfortable for me to get my hair washed in the sink at the salon, but I have done it a couple times because it just feels so good (and I ask the stylist to put down a few extra towels for padding on the back of my neck). And one thing my neurologist told me- “don’t get poked with an ice pick in the base of your head because you don’t have any skull there to protect your brain!” I think he was trying to make a joke and make light of the situation…it worked!

                One of the most recent hurdles I have had to face was whether or not it would be safe to be pregnant again. After many appointments with my OBGYN, neurologist, and perinatologist, I got the green light to try and get pregnant, but I would just be closely monitored and would have to have a c-section (which I would do anyway since my first two were born that way.) At this point I had already gotten the IUD taken out because it was a foreign object and could be adding to my headaches.

We got pregnant almost right away and now have a beautiful and healthy baby girl! This last pregnancy was a little tougher than the first two because I was having a lot of bad headaches and decided not to take any medication for them because nothing was 100% safe for the baby. In fact, I’m still not taking anything because I am currently nursing. Personally, I feel like I can suffer through the pain if it will mean my baby stays safe. I know a lot of people don’t feel the same way as I do, they would have taken meds during the pregnancy and would not be nursing so they could take meds now, but this is just my personal preference.

                So what did you choose for the initial surgery—bovine patch or fasciotomy? Hindsight is 20/20. But seriously, less than 1% chance for infection and less than 1% chance for CSF leak and I get both?! What are the odds?!
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