Not Shooting for the Stars

Some days you just can’t get ahead.  I’ve only written six hundred words today.   Not enough, doesn’t matter.  I’m going to bed.  Too much stress today and I feel awful.  I just need to go back to bed.  I suppose, when you’re blogging every day there is going to be a day that is just not pretty.  Today is one of those days.  It wasn’t terrible, but I’m just worn out at this point and don’t feel like doing more.

So tonight I’m not shooting for the stars… I’m just going to go lay down and hope to wake up and feel better in the morning than I did this afternoon.  I would say chronic illness is to blame, and I’m sure it has something to do with it.  But in reality, doesn’t everyone just have “one of those days”?  In case you were wondering, it wasn’t rhetorical.  Give me a shout out and let me know I’m not alone here! Ha… ok… night.  :)

Writing Up a Storm

Night four (I think) of my experiment and I’m still loving it!  I’ll be honest, I don’t think I’m getting any more sleep than I was before, but I certainly am being more productive.  Something just hasn’t been jiving these first few days between my brain wanting to sleep and my kids sleeping when they’re supposed to.  Regardless of our inability to coordinate, things are going fairly well.  I am certainly not getting less sleep than I was, and I think having that solid, initial block in the early evening hours really helps if the early morning hours get rocky.

Tonight I fell asleep easier than I have been, which was great.  My brain started ramping up with the laundry list of things I had forgotten (why does it always do that when I’m trying to sleep?!)  But it was super easy to flip the off switch when I could remind myself that I was getting up in three hours and would just do it then.  I was actually surprised how quickly my mind shut itself up!  It was fantastic!

So what have I been doing with my extra time?  Writing of course!  Like I said, most of the time I’m gaining from this right now is going toward Nanowrimo.  I’m writing a novel, and it’s going really well.  I’m currently on course to win the contest of writing a 50,000 word novel in 30 days.  I don’t think that will be enough words to finish my book, but it gets me off to a great start nonetheless!

I am super excited about this particular expedition into fantasy writing, my first real shot at it, and I can’t wait to share all of it with all of you!  But for now you will just have to settle for a bit of an excerpt:

What was wrong with everyone? Couldn’t they tell there was something very wrong here? This wasn’t a carnival game or a part of the ceremony. The River hadn’t “gifted” them anything, how would a river even do that anyway? Why was she the only sane person here? The men got to chest deep water and began swimming, keeping their heads above water and eyes toward the basket. Kassia held her breath. The crowd held their breath.

Minutes passed as they maneuvered toward the center of the River, getting themselves into position to catch the basket as it drifted. Half treading water, half swimming upstream, they were drawing closer and closer. Benjamin was the first one to reach out for the basket, gently pulling it in to himself so as not to overturn it, he peered inside. He found layers of blankets, a few of which he soaked tugging at them to see what lay underneath. He cursed under his breath, very unlike him.

“What is it? Ben what do you see?” Brice prodded swimming up alongside him. “Ben!” The color had drained from his face; he made eye contact but couldn’t get anything out. Few things threw Benjamin Azure off his game, but this was more than he had bargained for.”

If that whetted your appetite a bit, stay tuned for more!

Coconut Krispies Recipe

Today’s mini thought is a delicious tidbit, quite literally.  If you need a GAPS friendly Rice Krispie recipe look no further.  This is the closest thing I can find.  (If you have something more authentic I would love to hear about it!!)  So, before I share the recipe, I’ll let you in on why I created it.

Since I was diagnosed with Hashimoto’s I have been on a very strict diet.  There are so many things I just can’t eat without repercussions that sideline me for days at a time.  I am more or less used to this way of eating now, but I get cravings for certain things that I know I can’t have anymore.  One particular item I’ve been craving for weeks is Rice Krispie squares.  Mmmmm….. Rice Krispies…. they are the perfect treat.  Oooy, chewy, gooey with just a touch of crisp.  Marshmallowy, vanilla flavored goodness all in a perfect square shaped treat that you can take pretty much anywhere.  Who doesn’t love these things?!

I don’t typically crave them, but when they’re around I can’t keep my hands off of them.  And now that I know I can’t have them, suddenly it’s all I want!  A couple weeks ago I swear I ran across a recipe for GAPS approved krispie treats made with shredded coconut.  I was thrilled!  And for about a week I stored the exciting find in the back of my mind for a weekend afternoon that I could test this out.  Unfortunately, I forgot to store it in my browser and had no link.

No problemo, I thought to myself.  Google never fails me.  I searched “GAPS approved Rice Krispies” and “Paleo Rice Krispies” and “Coconut Krispies” (which turned up this gem, by the way, but not exactly what I was looking for.)  I searched so many pages of Google and I could not find my substitute rice krispie treat recipe anywhere!  I looked for days until I finally decided that I was just going to have to figure it out myself.  And I did.  And now I’m putting it here so that you don’t have to.  (And so that I don’t have to again.  Haha)

IMG_0833Coconut Krispies

Shout out to Mommypotamus for giving me the tools to create this with her GAPS Marshmallow Recipe!


1 Cup Water
3 Tbs Grassfed Gelatin
1 Cup Honey
Vanilla Extract
Sea Salt
4-5 Cups Shredded Coconut


Prepare a 9×3 inch baking dish by lining with parchment paper.

Seperate your water into two half cups. Pour one half in a medium sized pot and the other in a large mixing bowl.  Add your gelatin to the bowl and stir until completely mixed with the water.  In your pot add the honey, a pinch of sea salt and 1tsp of vanilla extract.  Bring to a boil.  Use a candy thermometer to make sure your honey reaches 220-240 degrees (soft ball stage).  This takes several minutes.

Once your honey mixture is at temp, transfer that to your bowl and pour in with the gelatin.  Add another half teaspoon of vanilla.  Use a hand mixer on low to combine and then increase to high speed until you reach a thick marshmallow-cream consistency.  Once there quickly fold in your shredded coconut. Use four or five cups, depending on desired consistency.  Be sure to work with all deliberate speed here so that your marshmallow doesn’t set before it gets to the pan!

Once the coconut is well mixed, pour into your baking dish and press down to get your square shape.  Allow your krispie treats to rest for a few minutes before cutting into them.  Thank the Lord for providing these new gifts and enjoy!

P.S. – If you were the one who posted the original recipe for GAPS Rice Krispies, feel free to give me a shout with your link so maybe I won’t feel so crazy! :)

Mini Thoughts

So far my sleep experiment has been a success.  I am certainly not less rested than I was before, and I seem to be feeling more energized.  Though it’s early on, so I’ll reserve judgments for now.  I am certainly being more productive than I was before!  The freedom to fall asleep at 7pm knowing I will have two or three more hours in my day to work (without kids!) is just so freeing.

And look, another blog!  Even so, don’t expect too much from me this month.  I plan on doing lots of blogging, but short and sweet blogs with one or two thoughts from the day… mini thoughts you might call them.  :)  The majority of my writing time this month will be dedicated to Nanowrimo!  I won Nano in 2010 when Evie was a baby and haven’t had a chance since then.  Right now I’ve got a great novel idea and I’m going for it.  I will post some excerpts for you soon!

I also have some great holiday recipes that I’ve been testing out and I will be sharing throughout the month.  Looking forward to having some time for my outlet again and praying that my sleep experiment continues to go well so my blogging can keep going.

Hey! I’m awake!

Ever watch signing time?  For those who do, I have that “Hey! I’m awake and I’m ready to start my day!” song stuck in my head.  You’re welcome to join me.  :D

Actually it’s 11pm but I just woke up an hour ago.  I am shifting my sleep cycle in an attempt to both get more and better sleep and be more productive.  I actually read about the concept of “second sleep” in this article a few years ago and just thought the other day, maybe I should try that…   Why?  I’m so glad you asked!  Let me show you.  Usually my nights go like this:

6:30pm – We start the bedtime rituals with the little ones.  I am already exhausted from the day.

7:00pm – We are finishing bedtime routine and praying everyone falls asleep.

7:30pm – Everyone is in bed, hopefully sleeping, I collapse into the recliner.

8:00pm – Jake and I halfheartedly discuss everything we should be doing but are too tired to do.

9:00pm – By now I am way too tired to still be awake, but I know how much I need to be doing so I don’t go to sleep.  I can’t sleep.  My mind won’t let me.

10:00pm – Tired. Stressed. Overwhelmed.  Still in the recliner.

10:30pm – I have now dragged myself up the stairs and into my bed.  I spend ten minutes nursing baby to sleep.

10:40pm – Stephen wakes up and needs to cuddle.

10:50pm – Evangeline wakes up and needs to go potty.

11:00pm – The baby wakes up again because I keep moving.

11:30pm – Almost about to drift off into sweet, restful sleep and Jake comes up to bed.  Kids are awake again.

12:00am – I finally get to sleep.

Do you see how unproductive this is??  Very!  To add to all of that, at about five or six in the morning the children start waking up, so I am awake again, but too tired to get out of bed.  I usually drag myself out of bed at 7:30 these days.  Guess who is making breakfast?  Yeah… not me.  (I have to add here that I do have the best husband in the whole world.)  So I spend about nine hours physically in bed and I’m only get about five hours of total sleep.  And the two hours I am not in bed after the kids are down, I am not accomplishing anything. I’m much too tired mentally, emotionally and physically.  But I can’t sleep because I know it’s my only time of day with no children.

So a few days ago a lightbulb went off.  What if I just throw out my whole playbook and made a sleeping schedule that actually worked?  Who says I have to sleep one long stretch and if I miss that window I’m out of luck?  I decided to make my own rules.  Here’s what I’m trying now instead:

7:00pm – Lay down with the children and GO TO SLEEP.  I can’t remember the last time I wasn’t ready to pass out by seven o’clock.  So might as well!  Those first couple hours are when the kids sleep the soundest.  I should sleep when they sleep.  Parenting 101 right?

10:00pm – This is when the kids usually start getting restless anyway.  So I’ll just wake up here, help all my precious little ones get their nighttime needs met (not begrudgingly because I was going to get up anyway! Brilliant!!) and then go get some work done.

12:00am – I think this is where I will probably crash again and the restless window for the kids is usually done by now.  So I will go back to bed about here.

5:00am – If I get a three hour stretch earlier and then this five hour stretch it should be easy for me to wake up at five, a little ahead of the kids, so I can make breakfast and prepare myself for a great start to the day!

I know, it seems a little too good to be true, right?  I get more sleep and spend less time in bed, all with waking up earlier and getting more time to myself.  Perfect.  We’ll see if it works!  But, if nothing else, you have a blog post tonight courtesy of second sleep!  I’ll see if we can keep it going!

P.S. – For those of you who might be new to my blog, welcome!  (I got quite a few views on my Replacement Mom post that I wrote a year ago.)  I also just wanted to thank all of you who commented.  Your thoughts mean the world to me!  I wish I could respond to each one, but please know I do read them all and they are so encouraging and make me want to keep writing.  Thank you for taking the time to chime in.  <3

The Old New Post

So with our less-than-stellar internet connection I usually type out my new blog posts in a Word document and then copy and paste.  Usually that works great.  Except this time I apparently forgot to put my fully written blog on the blog.  This was written a week ago.  Sigh… I’m posting the date as it was originally intended rather than posting it as today’s date.  Lucky for you another post is already in the works so you won’t have to wait long for the next one! Haha!  

IMG_0764Where to begin?  So much is happening so quickly.  As you all know, I was recently diagnosed with Hashimoto’s Thyroditis.  On Monday I had an ultrasound and they would like to follow up with me every six months just to make sure it’s still looking as it should.  Praise God there are no signs of cancer!  I am still not sure if there were visible signs of damage to the thyroid or not, hopefully we’ll get more details in a few weeks.  But the worst case scenario is out of the equation which is a huge relief.

After receiving my diagnosis two weeks ago, I immediately began digging into the literature and seeking wisdom from others who have walked this road before me.  As the name of my blog might suggest, jumping to medication is not exactly my ideal route.  Unfortunately, my doctor gave me no other options.

Not only did he not give me other options, he told me that there was nothing conventional medicine could do to address or slow down my autoimmune disorder or even prevent me from incurring more autoimmune disorders down the road.  All he could do, he said, was to manage my symptoms.

I wasn’t satisfied with that answer.  I just wasn’t.  Since my diagnosis I’ve had over a dozen good friends come to me and let me know that they have the same exact diagnosis.  All of them are on medication, and almost everyone I’ve talked to with this disorder is taking medication for life.  My doctor has prescribed medication for me as well.  But here’s the thing… I’m going to wait on that.

I’m so glad that we have medication for when our bodies cannot function like God intended them to.  I am so happy that our technology has given us the capability to provide synthetic (and sometimes natural) hormones for our bodies to use to replace the ones that we sometimes can’t make ourselves.  But I’m just not sure I fall into that category.

According to my blood work my thyroid was functioning in the normal range until just a couple of months ago, and then it stopped.  Out of nowhere!  It just stopped.  The blood work matched my experience exactly.  During Hope’s hospital stay my health took a terrible turn for the worse and it wasn’t recovering.  Now I know why.

The thing is, there were a lot of factors in play that led up to me having an autoimmune disorder.  It has been years in the making and has been causing me grief for quite a long time.  I simply didn’t know that the reason why I felt so bad so much was that my body was attacking itself.  Once you develop an autoimmune disorder you can never un-develop it.  There is no cure for this disease.

But here’s the great news, you can achieve remission.  You can whip your immune system into shape and put it back in its place (which is attacking real foreign invaders!)  I know this because I’ve heard the success stories, because the science backs everything I have learned about health and wellness and because I am doing it right now.

After my initial diagnosis I spent a few days researching and prepping, and then I began the GAPS diet.  I am using a modified version of it that addresses specific food sensitivities and challenges for people with autoimmune disorders.  You can find that here.

Within a week of this cleansing, healing routine I was practically symptom free.  Almost two weeks in now, my headaches are gone, fatigue is greatly diminished, my depression is gone, my irritability is working its way out, I’m finally able to lose weight, etc.  I feel absolutely wonderful for the first time in a long time.  I haven’t done any new blood work yet, but I am quite excited to see what the next round will say.  I do believe it will show that I’m on the right track.  If not, we’ll rethink the medication.  But I’m excited to be working toward a solution.

The one thing about this route is that it’s very time consuming.  I’m spending all my free time cooking.  I had some much appreciated help from one of my friends at church the last two days, and got a lot of cooking done that I needed for the weekend.

The worst part of all this is… when I cheat I really do pay for it.  Twice already I’ve dipped my foot into the waters of this-is-probably-not-good-for-me-but-I-will-eat-it-anyway.  And both times I’ve paid for days afterward for it.  When I put food into my body that it doesn’t like, my body attacks itself.  I must stay on track 100% of the time.  It really is that important.  Unfortunately, that means fellowshipping over food (which is the best way to fellowship if I do say so myself) has become a little more difficult.

I love our congregation so much, and the pastoral circuit and groups we are involved with and family meals at the grandparents’.  I love going out to eat on dates with the kids or my husband.  But those things are just a little harder now.  My family is already showing huge amounts of support and love, they are even joining me on our journey.  As autoimmune disorders run strongly and on both sides of the family, it’s important that we protect our children through good nutrition as well.

We are fighting for the health of our family.  The healthier we are the better equipped we are to serve our neighbors, and especially our church.  This isn’t a forever thing, especially for our kids.  (And they can cheat here and there without the kind of repercussions I face right now.)  They will be able to get healthy, bounce back and join in with the rest of the community with no adverse affects.  I’m rather sure of that.  For me it might need to be a permanent change.  Only time will tell.  As always, I’m excited to share the journey with you as it unfolds.

About My Diagnosis

Fair warning: This is going to be a long, dense post as I try to sift through all the information as efficiently as I can. I want to explain what’s going on, as this has come out of nowhere for a lot of you and many of these things I never really talked about before. Also, when I announced my diagnosis the other day I was quite vague.  (I wasn’t exactly sure what to say yet.)  So I’m just going to connect all the dots and tell the whole story. Ready? Ok.

First I want to backtrack a little bit. When I was in high school (ok so maybe we are backtracking a lot…) I played sports: volleyball, basketball and track along with plenty of camps and training during the summer. I worked out on a daily basis, and although I wasn’t exactly a star athlete, I was in pretty awesome shape.

But there were a few warning signs that something wasn’t quite right. I was a long distance runner; a typical daily run for me was three miles. I began to notice that during these longer runs I would get really itchy, followed by headaches. I chalked this up to sweating, dehydration, you know the usual culprits.

One day at track practice I had an anaphylactic reaction. I had no idea what caused it, itchy palms, swelling of my face and hands, trouble breathing… I was prescribed an Epipen, it happened once more during a basketball game and then never occurred again. We never tried to understand what had caused the episodes. All I knew was that both episodes had two things in common: exercise and an emotionally charged situation.

I carried my Epipen for a few years, but after sports in college and plenty of exercise never triggered more anaphylactic episodes, I never bothered to get it renewed. So now I was in college, and I began trying new foods, guacamole was a favorite. Unfortunately, after a few encounters with my new friend, I began reacting negatively to the avocado. Eating it caused terrible abdominal pain that’s difficult to describe because it is unlike any other stomach ache I’ve ever had. It rendered me bedridden anywhere from twenty minutes to several hours depending on how much I ingested. I stopped eating avocado.

As time went on, more foods began producing the same reactions. Bananas were the next culprit followed by kiwi (that developed a few years later when I was pregnant with our first-born, Evie). During that pregnancy I also encountered another health issue. Late in my second trimester I developed a painfully itchy rash all over my tummy, sides and thighs. They blistered and scarred and were pretty much horrible.

My midwife thought that it was PUPPPS, but when it flared up after delivery and persisted, she was rightly concerned and thought it would be best to see a doctor. My doctor was totally unhelpful, did not suggest a biopsy and only said that there was absolutely nothing else it could be and no treatment she could offer.

It did go away on its own after a few months, but I experienced mini flare ups in between pregnancies and have had the same issue to varying degrees in all three of my pregnancies. I found that there is another condition, called Pemphagoid Gestationis (PG for short). It is a rare condition that looks much like PUPPPS but it is more serious, can affect the baby, and it is an autoimmune disorder.

I was in no hurry to be diagnosed, because my symptoms seemed quite mild compared to that of other moms struggling with PG. Mine was manageable without steroids (most cases are not) and a biopsy didn’t sound like much fun. What I didn’t know is that if you have an autoimmune disorder, it’s important to know about. They are serious conditions regardless of your symptoms. And once you have one autoimmune disorder, you are at risk for developing more.

As time went on I continued to find I was sensitive not only to kiwi and banana, but to many other foods. Eggs and any kind of fresh melon would cause a reaction. About six months after moving to Missouri our family went on the Whole30 diet to alleviate some tics that Stephen was experiencing. I also found, after eating clean for thirty days, that my food sensitivities were much better. As long as I ate in moderation, I could eat eggs and avocado and whatever fruit I liked.

In my naivety this was proof to me that I could get healthy again simply by getting my diet in order, that there wasn’t anything seriously wrong with me. It actually gave me the freedom to put aside maintaining that healthy eating while we were focusing on finishing the adoption. After all, you can’t eat Paleo while travelling in a foreign country with two small children! It’s just not practical. Or so I told myself…

And for the next year and half I had a plethora of excuses to not get our family back on track nutritionally. As you well know, we’ve had a lot going on. And my health began to show it. I went into pre-term labor with Kyrie’s pregnancy last winter, a known risk with PG pregnancies. I went on bedrest and we managed to keep the baby where she needed to be, but it took a huge toll on our family and on my health.

After Kyrie was born we were relieved. We thought the worst of it was over and healing could finally start for all of us. But more health problems were around the corner. I had a uterine infection a few days after the birth; I became very ill and had to go on a week of antibiotics.

We attempted public school as a way of lowering everyone’s stress levels. It was a bust. Jacob did very poorly in school due to his institutional history and they didn’t give us any good options for schooling Hope. I was beyond stressed, the amount of paperwork and meetings and planning we had to do for school only increased my work load and made life harder.

In April Hope’s shunt failed and she needed emergency surgery. By this point my body was totally depleted in every way. I was sick all the time. If I ate food it made me ill, if I didn’t eat I was sick. I was lethargic, couldn’t think, horrible mood swings and blood sugar crashes. I knew my stress levels were too high. I knew I wasn’t taking care of myself, and I knew that I had a lot on my plate. I didn’t realize it was anything more than that or anything that couldn’t be solved by addressing those external factors.

By July we were definitely at an unhealthy point. Something had to give. We needed to find a solution. I didn’t feel like we were at any kind of emotional or mental state to radically change our family’s eating habits to get us off the crazy cycles we were on. Let alone time! I had no time to do any of that! I was lucky to get PBJs on the table as it was. I started looking for simpler solutions.

Enter Plexus. An adoptive mama friend of mine was selling it. I saw awesome things about it. Most importantly, it works to balance out those pesky blood sugar levels. We dove in and tried it. Two days before it got to us I was having such severe crashes that I was not even functional by the afternoon. I was hurting and exhausted and had to lay down for hours at a time.

I went on the Triplex, hoping that would help me work through my digestive issues as well. The first day we went on it we felt like brand new people. It was amazing! I even felt motivated to eat better and my cravings were gone, my mood swings were gone, my depression was gone. I had so much energy. It was great. I remember saying “I’m so glad we started this, because things were getting so bad that I was about to head to the doctor to find out what was wrong with me!”

Two days after we found that miracle, life struck again and Hope was back in the hospital. This time it was a two week ICU stay and two surgeries. The stress we were under was incredible. My symptoms began to return. I assumed it was just the stress, when in reality the stress had triggered something much bigger.  (Stress is very bad for autoimmune disorders.)

Over the next few weeks I kept expecting my happy Plexus Self to return. That never happened. I could tell that it was helping me to function properly, but I couldn’t find that symptom-free person I was. I decided to start trying harder, eating better, exercising. The kids and I went for little “runs” around our parking lot and did fun exercises together. It was a great way to start and I felt a tiny bit better.

Then, on the second day of that, I had a terrible, itchy rash and a headache. I had had it the day before too. I tried to think back to if there ever was a time that I didn’t run without having a reaction. Never… in about a decade of running. My mind flitted through all of my history of symptoms from exercise-induced anaphylaxis, food intolerances topregnancy rashes… something was wrong.

I decided to go to my doctor, and she agreed I should be referred to an immunologist. The rest, as they say, is history. I was diagnosed with Hashimoto’s Disease, an autoimmune disorder where your body mistakenly attacks its own thyroid. The immunologist told me that over the last several weeks I had jumped off of a “hormonal cliff”. In other words, my thyroid quite suddenly just stopped producing any hormones at all.

Everything my doctor read in my blood work was exactly what I was feeling. Things began to come together and make much more sense. So where do we go from here? Next week I will be going in for a thyroid ultrasound to check for any suspicious nodes that could be pre-cancerous, as is a concern when your thyroid is so damaged.  As it is, my thyroid is incredibly compromised.  Fortunately, it is supposedly still at a treatable stage. We do not know exactly what the next steps will look like from here but I’m already making some changes that are starting to help. Stay tuned for that!

What We Didn’t See Coming

This is not the post I was expecting to write to you all today.  Next week was actually supposed to be our back to school week with all the frills and fun that that brings.  I had just finished concocting my weekly chart, and was so excited to get to use it.  I couldn’t wait to blog about it and tell you what our first full-fledged homeschooling year would be all about.

That post will still happen, just not today.  And my lovely school chart will be used, just not next week.  Yesterday life threw us a bit of a curve ball.  They seem to be coming one after another these days, which makes it so hard to tell you how we’re truly doing.  One day we’re great, and the next we’re devastated, and then we find our footing again before finding something new to stumble on.  This entire last year has been this way and it’s quite exhausting.

Usually, though, it’s a health issue with the kids or emotional setbacks or our car breaking down.  This time it feels different, because… it’s me.  Growing up I was always the “healthy one”, I watched my brother and sister go through allergies and asthma and all kinds of hardships.  The worst thing I ever went to the doctor for was a broken finger and strep throat.  I’m used to being healthy, and I’m used to taking care of sick and fragile people around me.

Now it’s my turn to be sick, and it’s not something that will be leaving me.  I have a diagnosis, a fun little medical label that now gets to follow me around for the rest of my life.  The doctor is anxious to get me on medication, supposedly medication I would need to use for the rest of my life.  I have specialists to see and screenings to be done.  I am out of my comfort zone friends.  Specialists are for my children, not for me… right?  Right??

I won’t lie… this is hard.  But hard is not always bad.  The truth is, I haven’t been healthy for a long while; I’ve mostly just been ignoring the warning signs my body was giving me.  The ever-fluctuating hormones of post-partum, along with the stress of the last year, have seemed to trigger my underlying issues and have caused a downward spiral in both symptoms and severity.  It got to the point where we could no longer ignore the issues, and we decided it was time to find out what was wrong.

I am thankful we went in.  I’m thankful we have answers, even if I am not happy about what the answer was, we knew it couldn’t be anything great.  Nevertheless, now that I have a name for my malady, I can start finding some tools to alleviate it.  I extremely grateful that it is treatable.  Sickness and death are a part of the fall, they happen to all of us.

I am not immune from this, and am grateful for the opportunity to remember that life is a gift, each day is precious.  Being reminded of one’s mortality can be a spiritually healing experience.  I rest in the knowledge that God works all things to good for us, and that He is already using this curve ball as a catalyst to healing in our home in more ways than one.

I know that you all are praying, and I am so humbled and comforted by that.  Love to you all.  More to come soon.

Knock Knock…

Anybody home? Yes! I am! And we have lots to catch up on!  First and foremost, I wanted to announce the long overdue winner of our giveaway! Stefanie!  Congratulations!  I’ll be contacting you soon to work on getting your prize all set up!

Second, I am so sorry for not posting sooner.  The worst of the adjustment period seems to be over for us and I’m hoping that the next few months we’ll avoid surprise surgeries and unexpected setbacks and get to finally see what our new normal looks like.  We are also trying to get a more reliable internet connection at the house so I can blog more often.

It takes so long to upload a basic post that it hasn’t really been realistic for me to do much.  But now that we’re finding a groove, I’m ready to get back to it and a reasonable internet connection will allow that to happen!  It will also allow me to start uploading pictures again!  If there’s something that you’ve been dying to know about how our family’s doing please comment or send me a quick message and I’ll put it on the docket for posts.  Hope everyone has had a wonderful summer!  It’s good to be back!

Hope is out of the hospital, she’s doing wonderfully.  We are still working through some issues though.  The catheter that drains fluid from her brain became infected, and the bacteria was present in the spinal fluid of her brain.  Life threatening stuff!  But we have the amazing gift of medicine, and we give great thanksgiving to God for the miracles He accomplished through our doctors.  After spending two weeks in the ICU and going through two more surgeries, she is now healthy and thriving once again.

The unfortunate piece of this, however, is that Hope’s self-harming behaviors were the cause of the infection.  She constantly jabs and picks at her catheter.  It was never an issue before, I think, because it was an old surgery (from when she was a baby) and it was fully healed before her stimulating behaviors started.  But when she received a new shunt and catheter back in April, the tissue didn’t have time to completely heal.  We did keep her away from it for several weeks afterward, but that wasn’t enough time.

Now we are in the difficult position of preventing her from touching her catheter until it is fully healed – her neurosurgeon said six months.  The area we need to protect runs from her neck all the way down to her stomach, it’s a very large space.  There is absolutely no behavioral redirection that prevents her from picking; it is a compulsive stim and she just can’t help it.  This means that when we aren’t able to be one-on-one with her and watching very closely, we have to keep her safe some other way.

We are working so hard to find a solution that doesn’t include pediatric restraints.  It took us a month before any of her doctors or therapists would even have a serious brainstorming discussion with us.  We tried some solutions with our own creativity, but nothing has panned out yet.  Hopefully soon.

In other news… Jacob and Evangeline are starting 1st grade!  We have lots of great books to get us going and I’m super excited for both of them.  Technically Evangeline would be in Kindergarten this year, but since we are homeschooling it gives us a lot of flexibility to go at their pace, so I opted for an early 1st grade start and if we need to take more than a year to finish it no one will be stressed out!  Having them start in the same grade will also be super helpful for me, as I only have one lesson plan.  Yay!

I’m telling Stephen that he gets to “start Preschool” with them, which really just means I’ll have schoolish things for him to do when he feels like it.  Hope is definitely in school with us, but she isn’t really classified in any grade level yet.  I’m hoping that by the time Stephen is ready to start 1st grade her attentiveness will have grown enough that she can listen to the books and music and enjoy them along with him.

The children have reached lots of milestones since I last updated.  Jacob is now using crutches around the house instead of a walker!  He still uses his walker to go to church and back, but he is getting really strong and we are so proud of how hard he’s working on his walking.  He even walked up the stairs for the first time ever a few days ago!  Tomorrow is Jacob and Hope’s first baptism birthday and we will have a dinner and cake to celebrate with them.

Hope is now able to sit up on the edge of her bed and help me put her shirt on.  This is a huge accomplishment!  She does it without prompting and seems to enjoy participating in her care.  She is getting more interested in being a part of our family every day.  It’s amazing to watch her come to life.  I’m working on teaching her to tell me when she wants to be picked up and also showing her how to go from a laying to a sitting position.  She’s strong enough to do it, she just needs to learn that she can!  We started putting her in her stander for a while but we’re breaking from that.  Her braces aren’t exactly correct and she has some alignment issues, so we’re going to try and sort all that out before doing any more standing.

Evangeline has her very first loose tooth, which she is impatient to get out.  She also started her first dance class last week.  She is in a ballet and tap class and is really enjoying it so far!  It has some of the same elements as gymnastics, without the flipping on bars way off the ground, which she didn’t care for much.

Stephen, on the other hand, loves gymnastics!  His first class was also last week, and even though he was shy at first, once he got in on the fun he never stopped smiling once and he zoomed through all the skills.  I was impressed!  He is getting more interested in reading now and would be happy reading several books all in a row if I had the time for it.  He just had his third birthday and is turning into a sweet, sweet kid.

Kyrie is growing like a weed; she is already in 2T clothes and she has four teeth!  Ack!  How did that happen!?  Last week she said her first word “Dada”!  She won’t say it for us every time, I suppose it’s on her terms. We are diaper free now except when we go out in town.  I still take her potty when we’re away, but we use a diaper just in case we can’t find a potty fast enough.  She stays dry through the night for us, which is awesome, and she typically has a few accidents throughout the day, but we’re doing really well for six months and I’m enjoying not having to buy so many diapers!


A Bright Day

Hi everyone!  Ok so really quick.  For those of you who follow my Facebook page, I posted a prayer request a few days ago because I was trying to write a post (which I’ve been honestly trying to write for months) and it just wasn’t coming.  The words I needed to say were hard words.  Really hard.  And I didn’t know exactly how to say them.

Well… ya’ll are amazing prayer warriors apparently!!  Because the next morning I woke up and my life was changed.  It sounds sensational and crazy, I know. But I have no other way of describing it.  So, if you want to hear more there’s a video on my Facebook page you can look at here. (Because I still have no idea how to post a video on my blog! Lol!)

I will be posting again soon!  And the next post will have the winner of the giveaway from a long long time ago.  Thank you all so much for your patience these last few months as my posts have dwindled.  There are some seasons of life where we need much grace, and this last year has definitely been that for me.

Looking forward to brighter days with the best people in the world who have stuck by me through it all.  I love each and every one of you, even those of you I don’t know who are reading I pray for you and love you just the same.

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