Life

Last night I was watching an episode of Downton Abbey, season 3.  (last year's season).  One of the daughter's died of eclampsia after childbirth.  Oh my, her blue face...it immediately threw flashbacks of Nolan into my mind, turning blue and going limp last July 15th during his anaphylactic reaction.  

Panic ensued.  I was hot and sweaty, thought I was going to throw up.   

He almost died.  Again.  

Stopping the "what if" thoughts is such work sometimes.   

What if he had died...what if he does die...it will happen again, it is only a matter of time...  

I haven't had this come up in a while, it really took me by surprise and threw me for a loop.  It is just so intense. 

Anyway, I am hugging him extra close again today, as that reminder was all too real for me.  

He is so very special; life is so very precious. 

My Writing Story

At first glance I was tempted to say I started writing when the 4^th of our 6 children was suffering from debilitating eczema.  I wanted to chronicle all that we were doing, to keep track and to be able to remember what worked and what didn’t.  It was 2006, and I had a much-neglected blog on homeschoolblogger.com so I just used that.  But when I began to really think and search my writing history, I realized that my love of writing started much earlier in life.

It’s funny how easily we can forget things when life happens.  This past summer we moved from the suburbs to “the country”.  Kind of by choice, mostly by necessity - that’s a whole other story.  But as I was moving boxes around in our very-old-but-new-to-us home, I came across a few boxes labeled “memories”, which had not been opened since the last time we moved 8 years prior.  I broke the seal of packing tape and found the box was full of notebooks.  Upon leafing through them I realized many  were my old prayer journals.  Journals I’d kept, but forgotten about.  Journals from before becoming a wife and mother. 

As I read these journals I was astounded by the depth of what I’d written; the depth of my relationship with God; the time I invested in pouring out my soul to Him on paper each day.  I could hardly remember that being part of my life.  But I did begin to remember.  I did love to write much earlier in life than I thought.

I think the beginning of my love of writing was my junior year of high school.  I started out in the “advanced” literature class.  But I was so intrigued by my classmates in the “normal” composition class, carrying around those plain black composition notebooks that just looked so interesting to me.  I don’t know how long it took, but I did eventually drop the advanced class to join the ranks of the non-advanced, and I got my own prized composition notebook and began writing.  We were required to complete 3 journal entries a week.  I’d never been much of a journaler before.  But this, I loved!  And I found the other writing assignments that year to be so enjoyable.  It was never “work” to do English composition homework, though challenging.  It was fun!  That teacher both inspired and encouraged my writing.

I hadn’t intended to put down my pen, but it happened.  The kids came fast and furious, and by the time we had our 4^th in less than 5 years, I’d forgotten I’d ever written much at all.  I’d lost my writing self, my voice, among many other pieces of myself.  Our 4^th child, with his 24/7 pain and itching, required me to give what little of me I had left.  But I did re-kindle that love of writing because of what we suffered through together.  After he began to get better, I continued to write. 

Over the years since then our family has faced crisis after crisis.  As I’ve written about our experiences here and there I’ve had more and more people encourage me to write a book some day.  Until last year I always brushed it off, taking it more as flattery than anything else.  But the crises and challenges of the last 2 years especially have awakened a new writing desire in my heart.  Not so much the crises and challenges, but the overcoming.  The hope and joy and peace I’ve found in the midst of what often feels like my world crashing down around me.  These are the things I want to share, because my life experience has taught me that we are not alone in our struggles - even the darkest ones.  Everyone has their battles, and most of us keep them well hidden.  My desire is to write about what I have overcome so that others can know they are not alone and they, too, can have the peace, hope and joy that I have found - regardless of circumstance.

--

This has been written for a writer's group I joined through (in)couraged.

On making it through {on-going} hard times

Tonight after clicking on the blogger button for the first time in almost 2 months, I read the title of my last post - the "end" of the long winter...2013.  I had to laugh.  I guess it's true, because it is no longer 2013, though it is the same winter.  I certainly had hope when I wrote those words that it was the end of that very challenging time, but the truth would be known sooner rather than later that for a house the size of ours a 500 gallon propane tank will not heat for a whole winter.  Actually not even half a winter.

Yes, several weeks later our heating crisis continues.  As I type, we are sitting with a propane tank that is less than 15% full (that's 85% empty, but who's counting?).  And very little firewood, which would be burned in the way-too-small-with-a-way-too-short-chimney-leading-to-a-smokey-house wood-stove.  For simplicity, we call it "Lil Smokey".

We know all too well how Lil Smokey works in arctic temperatures with "polar vortex" winds, because we had the pleasure of living through that just a couple weeks ago.  You heard about the polar vortex that took the country by storm, right?  Yes, well, we were among those lucky ones you heard about on the news who were without power for several days - 1, 2, 3, 4, 5 - to be exact!  5 days!  I would tell you of all the details of the storm and all the little crises involved, and how we made it, but it would take a book, and well, I'm planning to write that book, so you'll just have to wait. ;-)

I think it's funny when people are aghast that we don't yet have a back-up generator, or a stock pile of firewood, among various other country "necessities" (we call them luxuries).  If you've known us for any length of time, you've gotta know that we like to learn everything the hard way. (okay, just a little sarcasm there).  Those people who "move to the country" and do it the "right way", with generators and tractors and snow plows and oodles of firewood....they're in a completely different place from us.  While "moving to the country" was actually a dream of ours, our experience a pretty nightmarish way of getting there.  You know, going through the crash and burn of a small business, having collectors and others squeeze you for every penny, going for weeks without income, having your income then reduced to half what it was before, then having other collectors squeeze another 25% out of that meager half, then bankruptcy, then foreclosure, then eviction...al the while trying to find a rental big enough for a family of 8 that isn't ghetto, and landing on an old "fixer-upper" (putting it nicely), and deciding it is the best option we have.  There isn't time, and planning, and foresight.  There is "find something", and "hurry", and "get it done", and "livable".  When we moved in we literally threw all our stuff into the house and hoped for the best.  There was still SO MUCH to do, and it has remained that way.  And not the aesthetic stuff most people seem to be doing these days, important health-related things like sealing up walls where mouse nesting is putting ghastly amounts of allergens into the air our very allergy-sensitive kids breathe, or cleaning up our attic that was open to the elements and infested with birds for who-knows how long, or the many other things we've still not had time or funds to complete.

And lest I come across as ungrateful for any of it, please do not misunderstand.  I am so very grateful to have a roof over our heads, to have our family together, to be out of the city, and for all the help that got us to where we are.  But the story didn't end there, really it was only just beginning.  We've had so much turmoil and crisis since moving, it's almost unbelievable.  I keep reminding myself our family is still together and we love each other, and that is what is important.  Tonight I looked into the eyes of my thirteen-year-old as they were welling up with tears because he is so sick and tired of being sick and tired, and I was able to encourage him with those very thoughts.  I don't say, "it's going to be okay", because that may or may not be true.  But I do say it won't be like this forever, and our hope is in eternity; because we know God loves us, and we trust Him, and we know one day - even if it isn't until the day we enter eternity - one day, there will be no more suffering, no more pain, no more tears.  We trust Him, because we know He is Truth.  And we can have peace and joy and hope because we know that Truth.  I'm also grateful for the huge amount of help we've had over the last year from friends and family.  Looking back at 2013, I can see the huge amount of turmoil, but I also see a lot of love and support and helping hands and prayer.  As Brian said recently, "We do certainly get to see the goodness of others through our tumultuous life more than most, and that is a blessing"!

Sometimes it seems you don't have a choice, but I have learned in the last couple years, there is always a choice.  It may be that the other options are completely ridiculous, but there are always other options.  There is always a choice - even if it is only how you react to a given situation.  So as each day begins and I think about my sick kids and this house that is making them so, and our heating crisis, and our lack of emergency preparedness and our overwhelming to-do list...I know that my choice is to keep doing the next right thing, and to make the best of the situation, and to keep trying, and to not give up.  My choice is trust God, trust my husband, love my children, and share in the joy of living with them.  I pray to God for wisdom, and thank Him that His mercies are new every morning.

When the whirlwind passes by, 
the wicked is no more, 
But the righteous has an everlasting foundation. 
Proverbs 10:25 

You will keep him in perfect peace, 
Whose mind is stayed on You, 
Because he trusts in You. 
Isaiah 26:3 

I sought the Lord, 
and He heard me, 
And delivered me from all my fears. 
Psalm 34:4 (which doesn't mean we don't face hard times, but we have nothing to FEAR because our hope is in eternity with HIM - praise GOD) 

These things I have spoken to you, 
that in Me you may have peace. 
In the world you will have tribulation; 
but be of good cheer, I have overcome the world. 
John 16:33

Coming Soon -- The End of "The Long Winter" Phase of 2013

I ordered {and pre-paid for} propane today!  This is cause for huge celebration, just trust me.  Anyone who has read
The Long Winter by Laura Ingalls Wilder will be able to understand why I've referred in my mind to November 2013 as "The Long Winter" for us.  Here's the story.

Brian's mom and her husband had graciously given us an Indiana State Parks pass for Christmas.  Many months later in October as we were {still} unpacking boxes we came across a gift certificate included with the pass, which we could use at any of the State Park Inns.  Our 15th anniversary was just in August and we celebrated with a take-out pizza.  :)  So, we arranged an overnight away for a belated anniversary trip at the beginning of November - our first night away in 5 years!  Two days before we were supposed to leave I was awakened around 5 am with a loud banging/clanging sound, and noticed how chilly the house seemed.  Brian was not in bed, so I went searching for him.  I found him in the basement and was informed that we were out of propane, or at least that's what it seemed as the furnace wouldn't turn on.  We managed to get a few space heaters from family, and the kids were all set to stay warm while we were gone for *one night*.  :)

Just a week before this, we knew we had about 20% in the propane tank, and I had called about getting it filled.  The representative at AmeriGas kindly informed me that we would get a significant discount ($150 or more) if we waited until December 1st to order the fill.  This was a 12-month promotion - the last time we ordered gas was in December of 2012.  Mind you, last winter the propane was only used when Brian, with various others, was working in the house - we weren't living here, so it wasn't being used much, less than 50% of the time, and kept at a very low setting as manual labor tends to keep you warm.  So, back to October, Brian and I thought we could make it on 20% until December 1st.  A week later, we learned we were wrong.  When it was really cold outside, there wasn't enough pressure in the tank to move enough gas to light the furnace.  But we decided to hold out for the discount anyway because, frankly, we needed it.  Though, in hindsight, it did prove to be more difficult to get through the month than we had anticipated.

The reason it's been a long, challenging month is because without propane, we have had to heat our home with space heaters {in the bedrooms and laundry room} and a little wood stove.  This wood stove is "EPA approved", although honestly I question the EPA's stamp on this one.  It is also about 3 times too small for the size of our 4000 square foot home.  And it's chimney is several feet too short, which means the potential for back draft is huge, especially when it's really windy (and we have had plenty of smoke in the house to prove it).  And - the icing on the cake - it is located on the porch.  Yup, you read that right.  The porch.  The folks before us enclosed the wrap-around portion of the front porch, stuck a wood stove in it, and called it heat.  That tiny 8x8 foot area does get really warm!  But that alone doesn't do much for the rest of the house, especially the far corners - the dining room, kitchen, laundry room and pretty much all of the upstairs.  Which is, obviously, why we need the space heaters.

This situation has just been one thing after another.  First, in order to keep a little stove burning you have to constantly be adding wood to it!  Which means we can't fill it and leave it to burn through the night like we could if it was the right size and in a central location.  So Brian and I have had to take sleep shifts for the last 5 weeks - he staying up until about 2 am keeping the fire going, and me getting up at 4:30 am to keep it going until the rest of the family is up.  Also because of the constant need for wood, and the fact that this is our first winter here so we didn't have any already cut from last year, AND the fact that we don't have the luxury of buying wood, Brian and Andrew have been chopping wood in their free time.  Which, really, Brian doesn't have free time because in this house there is always something needing attention - plus his car broke down the second week of November, so he was also trying to fix that in his free time (still not fixed, but thanks to his brother we have a running vehicle for the time being!)  Andrew has really gotten good at chopping wood, and he's very proud of the physical work he does - as he should be.

The third week of November the glass panel on the wood stove door shattered into a million pieces.  That was exciting, and a little scary.  Then also the rope around the door that seals it has come unglued and unraveled so that more air gets into the stove than should.  This means that the wood burns at a much faster rate, which means that we are going through wood faster than ever and having to fill the stove more often.

The fourth week of November Brian injured his hand, which is swollen and painful and aggravated by the vibration of the chainsaw.  But when you have no insurance, here's what you do with something that's not life-threatening - yuh deal with it!  He has continued to work through the pain, because really, he has to.

And finally, the electric bill.  Oh, my, today it came and it hit me hard.  I thought the highest bill had come and gone with the heat of summer and the window a/c units and the dehumidifier in the basement.  But, I was wrong.  The blower and fan required to move the hot air out of the {tiny} porch and into the rest of the {very big} house, combined with the space heaters, apparently costs more than the previous scenario.  :shrugs:  What can I do?  "Hey, South Central Indiana REMC, I think we should at least get a Christmas card for all the money we've sent you this year!"

Then of course it has been too cold or wet for the wood to dry outside, so we bring into the house enough for a day or two to let it dry inside.  This is NOT recommended for those with allergies.  We have had some issues, but again, what choice is there?  We just step up the immune-boosting herbs, do nasal rinses, try to clean the ash/dust that is falling like crazy, and keep our faces smiling.  :)  Because in all honesty, it could be worse.  I have often thought of The Long Winter just for the humor in my own mind, but also to remind myself that at least it's not that bad.  At least we're not braiding straw to burn in a little lamp for heat.

Anyway, the propane is ordered, and paid and we have no idea when they will deliver but we trust they will and we are very much looking forward to flipping that switch on again!  Until then, you'll find us chopping wood, or hauling it into the "fire room" as it has so been named, or filling "the little wood stove that could".  But that season of life will soon be over, and we will be glad!

First Thanksgiving in Quincy

Happy Thanksgiving to all our loved ones - friends and family, near and far!  We wish you a blessed day of love and gratitude, for those are some of the most important "things" in life.

As we began preparing for our first Thanksgiving celebration in our new {old} house, we were reminded of the many things for which we are thankful.  Yesterday, together with the kids, I worked to clean the house a little.  They picked up the loose odds and ends that had been left or forgotten throughout the last week.  I vacuumed the ginormous amount of dust/ash that falls to the surfaces of a home heated with a burning wood stove.  Mia worked to clear the island counter, which has a tendency to be a carry-all for many things - books, papers, bills, Lego creations Gabriel feels deserve the honor of center stage, among other things.  Riley cleared the desk which is the second place to be a carry-all - sewing notions, math books, books on CD, notes-to-self from yours truly, and various other items.

We didn't spend a lot of time on cleaning.  It's not about perfection.  Just clearing the work space so that we can have a clear view of what we are actually working with.  From that task, we moved on to food prep.  The girls cubed 2 loaves of rice bread to be made into croutons for our homemade-from-scratch stuffing.  While they did that, I washed and cut the many vegetables I will use in my stuffing, homemade broth, and in the turkey.  Meanwhile Andrew chopped more firewood and kept the stove burning hot to keep us warm as we worked, and Nolan and Gabriel helped him bring the wood in and stack it neatly to dry, as it is too cold for the wood to dry outside now.  Later I whipped up a coconut cream topping, while the girls worked on the cranberry sauce.

As we worked side by side, we laughed, talked about past Thanksgivings, and expressed our excitement and anticipation of the one to come.  Mia asked if I enjoyed all the work involved in Thanksgiving, "It is a lot of work," she noted.  Yes, it is.  And my reply was yes, I absolutely enjoy it.  I love all the work that goes into making a feast for my family.  We don't eat like this every day.  And I also enjoy taking the time to research good recipes that are tasty, allergy-friendly, and also healthy.  That combination is not easy to come by.  But as a mom who's been cooking without many conventional and often-used foods for many years, I find the challenge fun and very rewarding.

As we gather round our table this afternoon to celebrate our gratitude together, it will be a time of love and joy and openness that will be cherished as a memory for all of us for many, many years to come.

So what will be on our table this afternoon?  Here's our menu, keeping in mind everything is without dairy, eggs, nuts, wheat/gluten/oats, soy, beans/legumes.  Drum-roll, please.....

• Roasted Turkey
• Turkey Gravy
• Muzzie's Fabulous {Allergy-Free} Stuffing
• Mashed Potatoes
• Maple Sweet Potato Puree
• Roasted Brussels Sprouts
• Steamed Sweet Corn
• Sugar-free Cranberry Orange Sauce
• Biscuits
• Apple Cobbler
• Pumpkin Pie
• Homemade Coconut Cream Topping

I'm sure eyes will be rolling back in heads by 5 pm today.  :)  Now, I need to go finish my stuffing and get that bird ready to go into the oven!  Happy Thanksgiving to everyone - may your day be filled with love, joy and gratitude.

Quiet lately

Next week will mark 4 months since July 15th, 2013 when I watched our Nolan turn blue and pass out, after many other symptoms which were signs of severe anaphylaxis.  I’ll never forget the sight of him -- lips blue, head tipping down, eyes closing.  The paramedic shouting, “He’s going!” as she scooped him up and into the ambulance.  We rushed off to the hospital following behind the ambulance.  It was an awful gut-wrenching 40-minute drive, not knowing if he’d be alive when we got there.

Even just typing it makes me breathless.  It makes my heart start beating erratically, a lump forms in my throat, tears well in my eyes.

If you’re a parent, you may be able to imagine what it was like, but maybe not really.  I am the mom of a kid whose life is threatened every day by something as simple and non-threatening as food.  You may be able to imagine the unimaginable - the idea of your kid coming as close to death as mine did.  Or, you might not.  Before this amazing kid was part of our lives, I couldn’t imagine.  Not really.  I am a pretty empathetic person, but still it is always difficult to put ourselves in the perspective of a person in that kind of unimaginable position.

Anyway, as the 15th nears this month, I pause to think about the last 4 months.  Everyday I try to remind myself that life is precious, that I have this one kid among the six of them who is a tangible reminder that every day is a gift to treasure.  I try to remember that.  I try to be present with my kids and in my life, to soak up the gifts we have every day.  But as a person who only recently came to know who she really is, and only recently learned to cope without numbing feelings, or covering them up or using crutches to deal with them, the reality of almost losing my son hit me pretty hard.  I look back now and see that I haven’t really written much of anything since then.  At least not in public - I haven’t updated our blog, even though we have so many who follow it.  People - friends, family, acquaintances - who care about what we’ve been through, what we’re doing with our family and our house and how things are going.  

Ozark Mountains

Honestly, we have been busy.  Real busy.  Living in this house is like living in a literal to-do list.  At all times, there are too many things to do and not enough time, people or resources to do them.  And, we’re far away from everything, albeit by design.  But that means going to do anything, like grocery shopping, takes more planning, more time and more work.  (And more gas!)  We’ve had colds and fevers.  We’ve had allergies and asthma issues.  We’ve had injuries from minor to more serious, including a puncture wound in Annie’s foot.  We also took a vacation - a much-needed vacation which was supremely enjoyed by all and which took a lot of planning, time and work before, during and after.  Totally worth it, though!  We’ve had kittens.  9 cats in all - our mother cat Fanta had 4 more kittens while we were gone on vacation (stinker!).  

Turkey Run State Park

So, yes, we've been very busy.  And I had my heart broken, just a little bit, by almost losing Nolan.  And so it has taken some time to heal.  I’ve needed to re-prioritize our life a little bit.  I needed to create an anaphylaxis action plan, now that we are an hour away from the nearest {good} hospital.  Before, it was just 5 minutes away.  This is a big change.  We have taken some time this summer to just enjoy living in the country and just be together after the long period of separation the first half of this year.  We have still completed a LOT of work on the house, but we’ve spent a lot of time hiking at local state parks (they are “local” now!), playing on the property, enjoying the kittens and just being together.  We have taken some time to slow down. We've learned new things like Spanish and making homemade herbal products.  We’ve also taken time for others who've been in need during these last couple months.

So all that to say - don’t give up on us, and don’t forget about us.  I plan to post some updates on the house, I know a lot of you are still interested in what’s going on with that.  We’ve made some really great improvements!  Please continue to pray for us as we head into our first winter here.  We are currently without propane (our main heating source).  We learned we get a significant discount if we wait until December to fill our tank, so we are toughing it out with the wood-burning stove that is located on the porch (not exactly an efficient place - haha - long story) and space heaters. Andrew is quite the pro at chopping wood now!  Also please pray for my extended family as my uncle Dave fights terminal brain cancer.

Lindsay

Anaphylaxis Strikes Again

Nolan w/ his new MedicAlert bracelet

We're taking a break from house stuff to let you know about a terrifying event that happened to our family.  

Last week our most allergic kiddo, Nolan, had another anaphylactic reaction. This was the worst one he's ever had. He's had 2 previously - the first at 10 months of age when we didn’t have epi-pens yet.  We did not even know he had any food allergies yet, though we suspected.  The second episode of anaphylaxis was about 4 years ago.  We administered the epi-pen when he had obvious mouth/lip/tongue swelling. And now, this most recent anaphylactic reaction almost 2 weeks ago.  It was an overwhelming event and came at a time when our life and home are already so chaotic and we have been living under such stress for so many years. He is okay now, we made it through, but I want to share our story so that hopefully it can help another child or another family facing such an awful, terrifying event such as this.

Unfortunately at this point I don't know for sure what caused the reaction.  That is a scary thing because that means it could happen again, since we can't be sure what caused it.  But he had 2 things in the timeframe before the reaction began - a cup of tea, and a smoothie, both of which had only ingredients I knew he'd had before with the exception of a few dry raspberry pieces in the tea - he'd never had raspberries before.  I am in contact with the manufacturers of these products to figure out what cross-contamination we might be dealing with.  I also am looking into some other ideas, but for now, it is unknown what caused the reaction.  He drank the tea just before 4pm, and then I made the kids a smoothie which they had around 4:30pm.  

At about 5pm he vomited. At that time I checked him under his shirt, looked at his face, just looking for any indication it was an allergic response, but at the time I didn't think it was at all. The smoothie was very rich and sometimes - not often - but sometimes, he can't handle rich foods. He had no other signs or symptoms. I was cleaning a horribly stinky, dirty closet at the time, so I went back to cleaning, but 15-20 minutes later I noticed he was lying in bed. I went to him, asked how he was feeling. He said he, "just didn't feel well". He looked ok so I just let him rest. I saw him again another 15-20 minutes later, he brought a tick to me that he'd found crawling on him.  Again, he looked fine to me.  The time-line gets a little fuzzy from here, but around dinner time which would have been 6-6:15, my girls called the others downstairs to eat, and then I heard them shriek and one ran upstairs to me, telling me that he had hives. 

At this point I wasn't sure that the two - the vomiting and the hives - were related because they were so far apart. But he did have hives, big ones, all over. He is very contact reactive, so I put him in the tub to wash off, just in case that was part of the picture. He was sooooo itchy, I've never seen him freak out so much about the itch. Then he said he was having trouble breathing. I gave him benadryl and started a nebulizer treatment, then called our allergist. The allergist is 1.5 hours away now, but we have not switched doctors yet, I didn't know what else to do. I will say, now that I am not in a panic, I know that our allergist tends to be very unmoved and skeptical that it's ever as severe as it really is. (I do not appreciate this and already wanted to find a better doctor, but it's just been a crazy few months with little time to look for a doctor in our insurance network, etc).  But in the moment I wasn't thinking about that tendency of his.

The allergist, was also not convinced this was all one reaction to the ingested food (which, remember, at the time, I didn't think there was anything he'd eaten that he could possibly be reacting to), and he advised me to watch him for 15-20 minutes to let the benadryl take effect. He said take him to the hospital if the breathing doesn't get better after the treatment, or if he starts to have trouble again or seems confused. 

There was no oral/pharyngeal swelling - not through the whole thing. And I think that's what I was waiting for with the epi pen. We have given him the epi before, but it was obvious oral/lip/tongue swelling.  He never showed those specific symptoms this time.

Around 6:45-7 he said he was hungry, he was breathing okay and the itch seemed to subside a little so I let him sit down to eat.  Shortly thereafter he got up and walked to me, and then just kind of melted to the floor. He didn't pass out, but maybe his knees buckled? I don't know. He curled up on the floor, and that's when I knew this was not my kid, something was very, very wrong and I called 9-1-1. We are in the middle of no-man's land, 30 minutes (if you're truckin'!) to the nearest hospital and I was the only adult home with our 6 children. I did not feel comfortable driving him myself. So, then we waited. I stayed right by him, he was very calm and I did ask him questions and he was alert to who he was, his surroundings, etc. But he remained lying on the wooden kitchen floor. It was so strange.

At 7:30 the EMT's arrived. They came in, assessed him - what is he reacting to, what had happened, his medical history, etc. The main EMT said she thought I could take him to the hospital, or she could take him - it was up to me. He seemed "okay" enough to them. He was lying in my lap, sort of sitting up, leaning against me. She brought in a heart monitor and took a reading “just to be sure”. As she did that, I asked her to check his blood pressure, knowing that blood pressure can bottom out when they are going into anaphylactic shock. She basically told me no.  She said, “Nah, it’s really not very informative with little kids”. UGH. Then she looked at the screen and said, “Oh, what’s that”, and then explained he was having an arrhythmia. He had a premature beat. Then, he turned blue and passed out!! So, they scooped him up and headed to the ambulance. I followed with my other 5 kids, and got there about 20 minutes after them, I guess, according to his chart. I couldn’t run all the lights and get around traffic to keep up with them. (Most agonizing and terrifying half hour of my life, not knowing how he was in that ambulance, was he going to make it? I’m not sure how one ever fully recovers from that).

According to his record, he arrived at the ER at 8:06pm.  When I found him in the ER, the EMT told me that during transport he’d vomited again and they'd given him more benadryl via IV. I know now that I should have given him the Epi, but why didn’t THEY?! She also said that when she asked Nolan his name after the vomiting, he said “I don’t know”, but she dismissed it as him “joking with her”. !!! Oh my word, why would she not take that confusion seriously, given all the other signs and symptoms?!?

In the ER they finally gave him prednisone around 8:30pm. But still no epinephrine, even in the ER. This ER staff was the worst I’ve ever seen, everyone might as well have been wearing robes and slippers at the pace they were moving. Before leaving, the EMT stated the hives looked better.  I said, "No, they just have all swelled together so that you can’t distinguish them, which is typical for Nolan." No one said anything. It was as if I hadn’t said anything at all. I pointed out his ears, they were just so, so swollen and red.  But everyone ignored me.

Brian arrived around 8:45pm.  Around 9pm they put him on oxygen, though no one said why.  Then a little later they gave him some IV fluids. A little monitoring here and there, but pretty much I just sat there watching him myself. He started sneezing with the oxygen - they used a nasal cannula, I cannot imagine why not just a mask for a 7-year-old, but whatever - it was a minor thing compared to the lack of emergent care. He couldn’t stop sneezing. They finally just took the oxygen off, but he continued sneezing.

They discharged us just before 10pm. This, I could not believe. Around 9:45pm the “doctor” came over and said, “Oh, these have really lightened up”, referring to the hives on his legs and ankles. Yes, they were lighter. They were pink rather then bright red, but no smaller and certainly no less visible. I, again, pointed out how swollen his ears still were. No response. I was utterly dumbfounded. The nurse took Nolan's IV and stickers off, handed me discharge papers, saying, "Here ya go", and pointed me to the door.

The next thing I knew, I was in the parking lot looking at my son, knowing he should still be in observation for at least a few hours, probably overnight. I just could not believe this experience. I sat in the car with him, thinking it all through and then headed home. He continued to sneeze until we reached home and he got into bed (our bed! - we watched him through the night, something the ER should have done). He did change his clothes before getting into bed, and even after the 30+ minute drive home, he still had obvious hives. At that point they were much smaller, but still clearly visible.

I did not sleep that night (or many nights since). I laid there with him, checking him every so often. I could not turn off my mind. ...What had he eaten that was missed on my allergy radar?...Why didn't I give the epi? --> wait a minute, I am "just a mom", why didn't any of these medical personnel trained in emergency care give him epinephrine?!? ...How the heck are we going to live out here in the middle of nowhere with this hyper-allergic kid and that crap-hospital?! ...Why did no one listen to me - the EMT disregarded my request for blood pressure reading (which, by the way is a basic vital sign!!); the doctors and nurses ignored my observations of his condition.

I contacted Putnam County Hospital during those sleepless hours that night, filling out the online contact form stating I wanted to file a complaint about the care he received (or, really, did NOT receive).  I have since spoken on the phone with the ER manager, who told me she's received several complaints that her ER staff is "too laid back".  Several?!  Really?!  I am writing a detailed report of the incident to send to her, and to the hospital administrator, including current guidelines from the National Institutes of Health for anaphylaxis and food allergy.  If you or someone you know suffers from food allergies, asthma or both, please take the time to read this short primer on anaphylaxis.  I made the mistake of thinking that it's just oral/throat swelling that requires epinephrine.  I know better now.  But it's rattling to the core to know that your local emergency medical care teams do NOT know or understand there are many more presentations of anaphylaxis and that epinephrine is the only life-saving treatment.

I also have been in touch with the director of the Owen County EMS, which is the only EMS service in our entire county.  They're it, so we've got to do what we can to educate them.  On the phone, the director was unmoved, telling me, "Epinephrine is really hard on the heart".  I'm pretty sure that dying is even harder on the heart!  So, I will be giving him a report in writing as well, along with the NIH written guidelines for anaphylaxis treatment.  I plan to hand deliver it with all 6 children at my side, so that the EMS team can meet us in a non-emergency way, as the likelihood of us seeing them again, unfortunately, is pretty high.

Please share our story with anyone you know who deals with food allergies, asthma and or anaphylaxis.  Did you know if you have food allergies AND asthma that the likelihood of death from anaphylaxis is higher?  I didn't.  Not until after this incident.  I am NOT thankful that Nolan almost died, but I am thankful for the tools and resources available so that I can be better prepared and informed for next time.  And hopefully, with diligence and determination, I can enact change in my local medical community to be better prepared and informed as well.  I can hope!

Together

"We may not have it all together, but together we have it all!"

I read the above quote this past week and it really stood out to me, because it is just so true.  You may or may not know how much time our family spent separated this year, but it was a lot.  There was only one weekend from Christmas 2012 until June 8th, 2013 that Brian was home with us and not working in Quincy.  As the year progressed and the time to move was closing in he was working out there more and more, and finally the last month before we moved he lived there in order to work on the house at every waking opportunity.

I'd just like to take a moment to pause and reflect on what an awesome man I have for a husband and father for our children.  He worked through fatigue, sickness, lack of food, lack of money, sometimes lack of proper tools and materials.  A lot of people helped - a LOT, and I don't mean to minimize that, but Brian did the lion's share of the work on this old house.  I am so thankful for him and his dedication to the care and provision of our family.

Okay, back to the story of our lives. :)  I know that since we moved the few days leading up to the eviction date of June 13, I have not updated the blog except with some pictures from the first week.  Well, folks, things have been pretty busy, and pretty chaotic.  But that brings me back to the quote at the top.  It could have been pretty easy for us to wallow in our situation - that first week we had no washer, dryer, dishwasher, microwave, water softener, drinking water filter, etc.  It took us about 5 trips to get everything from Noblesville to Quincy.  By the time we got here our time and energy were spent, and our money was gone.  And this house, she still needed a lot of work!  But we are together again, and that has made all the difference.  The separation of our family was by far the biggest challenge.  We are so thankful to be together, to be living under the same roof (even if it does leak! lol)

All the kids seemed to come down with a bit of a cold, which we decided was from lack of sleep and changes in the allergens of the environment.  Nolan, however, was getting more and more sick the longer we lived here.  The middle of the second week here we began giving him two breathing treatments a day, along with two nasal rinses daily and his usual daily antihistamine and asthma preventative medications.  We also decided the boys' room would need to take priority over other repairs, so that having the room sealed up would hopefully eliminate Nolan's exposure to allergens while he slept.  We accomplished that task last weekend, the 22/23rd.  He is now down to one treatment and nasal rinse a day, so that is progress.  

The rest of the house needs the same work - sealing up the walls/trim, etc, painting (to seal in odors, etc).  Trying to clean/dust the place is sort of like putting a cork in a firehouse with the walls still open to the rooms, allowing drywall dust, mouse "stuff", and who-knows-what-else into the room.

Also last weekend we found that mice or a mouse had been eating out of our potato crate.  We found about 1/3 of a sweet potato gone, and the scat as evidence of the thief.  Andrew set a trap and the next morning we caught a very well-fed mouse.

So the next most immediate priority became making the pantry mouse-proof.  I wish I had taken a before-photo, but those of you who saw it will remember the shape it was in.  Brian tore out the shelves, fixed the walls, put in some leftover laminate we had for the floor, sealed up with caulk and baseboards, and cut and installed new shelves from wood we have out in the barn.  It is almost finished!  In the meantime, our "pantry" has been grocery bags on the floor.  :)

Another thing that kept us busy the first couple of weeks was learning to live with ticks!  Mia, Nolan and Gabriel all had attached ticks, which was no fun.  Nolan's had a nice "meal" before I found it.  That was a little scary.  Fortunately they were all dog ticks, not the black-legged deer ticks which carry Lyme Disease.  So checking for ticks whenever we come inside quickly became routine.  I also made a great herbal bug spray that has really helped with all bug bites.  Clearing the land is really the biggest project for which we don't have time, money or equipment.  If you read anything about ticks, you'll learn that keeping a "tick safe zone" is really important.  Clearing tall grass back away from the house so that the kids have a safe place to play.  Eliminating leaf litter.  Trimming away the dead trees.  These are all things that need to be done, but we do not have the equipment to do it.  We have a push-mower and are keeping the area right next to the house and under the tree swing mowed but the thing is on it's last leg.  So, we're just doing the best we can.  Watching for a super great deal for a brush mower on craigslist.  :)

We also got some cats this past Monday, hoping they will help with the mice population.

 We were connected through my mom with someone she works with, and ended up with a mother cat and her 4 kittens.  The mother has already caught a chipmunk, so she's a good hunter.  We hope she develops a pallate for mice! :)  Her name is Fanta.  She is an orange Tabby.  The kids named the kittens.  There are 3 grey females named Hot Shot, Tigress, and Molly Boots.  And a ginger colored male, named Ginger.  :)  They have taken up residence in the barn.

So, that's life in the country for the last 3 weeks.  At least, the major parts.  Lots of laughs and fun in between (like when I was startled by a vulture near our mailbox and jumped sky high and shouted Holy Crap!)  LOL  It's hard, but it's fun and the kids love it.  And, best of all, we're doing it together.

If you find yourself without much to do and want something to keep yourself busy, come on out.  There'll be plenty of work to do for quite a while to come, I'm sure!  Especially landscaping!  Bring your tools!!  :)  Seriously, just because we've moved, doesn't mean the work is done!  It's been fun having helpers around, Brian especially misses you all.  ;)  

Photos for now...words to come...tomorrow?

We've been a little busy, moving, trying to unpack, trying to clean, while still doing serious repairs in the midst of it all. 

Keep us in your prayers please.  I'll add captions hopefully tomorrow.  It took entirely too long to get these photos on here, and I cannot figure out how to make them a little more blog-friendly than just straight in a line.  So, try again tomorrow.  Night, all!

Lindsay

Boys' room

Boys' room

Upstairs hallway

Master Bedroom

Girls' room

Playroom/sitting room/??

Upstairs Bathroom

Hole near tub/shower due to plumbing leak

Parlor/living room

Kitchen/dining room

dining room

R

A

Little a

G

M

N

Burning stuff

That's what you do with your trash in the country ;)

Update 5/21/13

This past weekend we had more new faces and were able to get many things accomplished.  We have a few painted rooms!  We have an exhaust fan in the bathroom!  Brian is almost finished sanding and sealing the floors!  Thanks to those who helped, thanks to those who donated materials and funds.  We continue to be humbly grateful and in awe as we watch God working through His people in this situation.  

Things are coming together for sure, but as we look at the calendar, the deadline is closing and there are no more push-backs.  Even thought it may still look impossible to be move-in ready in just a few weeks, with God?  We know with God we can accomplish many things.  He is on our side and know He is faithful.  Thank you for trusting Him as you come along side to help bear this burden with us (Gal. 6:2).  

Below you'll find updated lists for what needs to be accomplished the upcoming 2 weeks. 

*Items in bold are things Helpers can do.

**Please let us know if/when you'll be coming so that we can plan according to how many people will be there to help**

We need to get all of these things finished this week/weekend (Thurs - Mon 5/23-5/27):

• roof repair
• sand remaining walls, then wipe those walls*
• prime/paint remaining walls*
• texture ceilings*
• sand/finish floors
• hang cabinets
• repair upstairs bathroom floor*
• fix lazy susan*
• touch up cabinet paint*
• convert cabinet to sink base*
• caulk/foam windows/doors*

Then, next week/weekend (Thurs - Sun 5/30-6/2) we will need to do these things:

install laminate flooring
install carpet
install kitchen counter top, sink
install bathroom fixtures
• patch/paint around new windows (hopefully they'll be in)*


install trim if we have time/materials
• put covers on switches and outlets*
• clean, clean, clean*

The following week would be cleaning/moving week.  And that's it, folks!  We are out of time!  

Obviously, This is a very tight schedule! We need as much help as possible!

Updated materials/supplies needed:

• leveling compound and vinyl for upstairs bathroom
• bathtub/shower enclosure for upstairs bathroom
• plumbing fittings for kitchen sink drain
• outlet and switch covers
• carpet, tackless strip
• baseboards, window/door casing