Chesed

WFMW: Breakfast

Anyone else get stuck in a food rut? Hands both up and waving wildly over here.  Because we live a fat thirty minutes from a grocery store, I plan out menus a week at at time.  Some weeks I could sit down and write out two weeks worth of menus in no time flat.  Those are usually the times when I’m starving hungry and the sun is shining.  Other weeks, there are dirty dishes on the table, the skies are greeeeey, I just finished a big meal …. and I can’t think of anything but the simplest, quickest food possible.  Which usually means making the same thing. over. and over. and over again.

I was tired of the breakfast rut we’d fallen into.  The boys really, really dislike cereal.  Liam isn’t supposed to be eating gluten so bagels are kind of a non-option.  I wish for quick and easy. Did anyone notice those three don’t add up?

So there we are. Quiche. Steel cut oats. Baked oatmeal. Breakfast casserole (thankfully I found a gluten free one that we all love). Fruit and yogurt parfaits. Smoothies and muffins. Almond flour pancakes. Begin process again.

Enter, Pinterest.  I spend zero minutes there for weeks on end, then suddenly get the urge and realize what a treasure trove it is! I have no idea why I don’t use it more regularly.

Here’s my recent breakfast inspiration.

{Sweet Potato Breakfast Skillet with Bacon}

I know.  I don’t even like bacon. Or, I’m not supposed to.  When we started buying MSG free bacon for Liam I realized the better quality bacon actually tasted like pork instead of fat.  It was kind of good. (I tried not to admit that out loud.) Then David cured some of his own last year.  Oi. I can no longer claim my distaste.  Just don’t expect me to willingly eat bacon bits on salad anytime in the next five decades.

breakfast skillet

Sweet potatoes and bacon seemed like an amazing flavor combination on paper.  It was even better in real life! It took a little while to dice up all the vegetables even though I bought sweet potato fries to speed up the process.  Oh, and I cooked the eggs til they weren’t really runny intentionally. This doesn’t qualify for quick and easy, but, oh, it was so, so yummy.  You really should try this for a Saturday morning breakfast.

Unfortunately, Adam and Liam didn’t like it. I think it was the idea of sweet potatoes for breakfast that threw them.  I’m pretty sure this could be dinner some night, too.

What’s your go to breakfast dish right now?


WFMW: Paper Snowflakes

Whenever I’m back in Virginia, I realize again that one of the aspects of a larger community I miss is the interaction, advice, encouragement, and helpful trivia from other women in the same stage of life I’m in.  You know, the kind of information that happens randomly while you’re rocking your babies in the nursery at church or at a social get together during the week.  I get wonderful snippets here and there … from a friend who spoke powerful words of life to me at a wedding we attended … from a teacher friend who gave me just the right idea for a school motivational issue …. from a cousin friend who was able to cut right through some of the vague things we’d been feeling with Zara and give me valuable insight ….. It all reminded me of how tiny my world is and how much we all benefit from interacting with a larger community.

In light of that, I’m going to start a “Works For Me Wednesday” edition.  Given my rather sporadic attention here, this isn’t likely to happen every week after awhile, but I thought it would be fun! Sometimes it may be practical; sometimes, like today, mostly fluff.  Sometimes I’ll tell you what works for me.  Sometimes I may be asking you for help with something.  Just pretend we’re both rocking our babies in the nursery and church is almost over. :) Or better yet, trying out the new hip restaurant in town for lunch.

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Today’s edition is paper snowflakes.  I realize that the more crafty of you can take a piece of paper, fold it back and forth, snip randomly, and create 137 gorgeous designs.  Some of us need a little help. I’ve always thought they looked like fun and was doubly surprised when the boys loved it as much as I did!  Way too often I overestimate their abilities or interest level and what should be fun ends up feeling like a to do list.  Or sometimes because of the gap in their ages one of them loves it and the other is bored.

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I used this site for free printable templates.  Even with our internet issues, I was able to download these easily. Score!

Adam chose the most intricate designs and except for both boys blowing a few at the very tip where a millimeter too far cuts a big hole, they loved it.

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“It’s kind of hard to stop,” gets translated, “This is a really cool activity” at my house. A candy cane disregarded on the table in lieu of a scissors definitely says that.

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You know you have boys involved, when even paper crafting requires the use of a flexcut. :)

Want a fun, easy craft that takes minimal supplies perfect for kids 6-36? I give this one a five star!

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Did you try any fun crafts recently?

 


Simple Gifts

It’s a day of intermittent rain, sleet, and quiet moments of grey.  But indoors, the luscious scent of roast beef slowly baking in the oven permeates the air.  The craziness of taking three big trips during November and being gone for thirteen days out of thirty-one means we have internet left at the end of the month.  Tada! The loveliness of streaming Christmas music on Pandora.  The leftover autumn candles are burning without discretion.  And for once in her life, baby girl opted to nap in the afternoon instead of in the morning which made school a little trickier, but this afternoon gloriously free!

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Some days are so brim full of the most delightful little gifts!

This morning the boys and I prayed for safety for the families who were bringing their kids back to camp through the icy rain.  We also prayed especially for a boy who opted to take matters into his own hands … that God would keep him safe and that satan’s power would be bound so that he would not make any decisions with life-long ramifications.

Some days when we are in the middle of a loud, happy holiday I think about the moms of our boys who are going through a hard time in life.

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On days like today when there is messiness around all the corners of the house, dishes break, and we’re all still trying to get back into the rhythm of home, I think about how much beautiful we have going on.  There’s a story behind every boy at camp, just as there is a story behind every person in the world.  If there is anything I’ve learned since being here, it’s that you can’t predict kids outcomes.  For every child who struggles with life because of certain circumstances, there is another child who thrived in a similar place. And for every child who thrives, there is another child whose spirit crumbles and who desperately needs someone to walk alongside them minute by minute to show them the way.

We’re never going to be able to parent perfectly or guarantee outcomes.

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Love. Structure. Support system. Prayer.  They’re all wonderful, oh so necessary things.  But they aren’t guarantees.  Because life is life, not an insulated bubble, and kids get to make choices.

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In the end, it all boils down to the most amazing gift.

Grace.

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Today at noon, the boys’ eyes widened as they realized both their prayers had already been answered.  The ice had not only stopped, the collection on the deck had melted.  David had called me to say the boy we were most concerned about had been found.  We held hands and prayed again in thanksgiving, but it was the eyes of my soul that grew wide the most.  Those hands reaching out to hold mine, those hearts turned toward God, those sweet spirits that emerge when the wrestling gets shut down …. those things aren’t because of what we’ve done as parents.  Those are the grace of God bringing so many beautiful gifts into the life of our family.

Today I’m praying again for the Mama warriors out there who are investing so much love, so many prayers, so much time …. and who wish with all their hearts to see these simple gifts.


Because God is always good

{If you’re subscribed here via email you probably found a few old posts popping up in your inbox.  I finally finished up a few posts I’d started after the kitchen was remodeled and left them with the original date so they’d stay in chronological order.  Yes, I’m a bit obsessive about things like that. :) If you’re not subscribed, scroll down past the recent posts about Zara to see pictures of our brand new kitchen!}

I think we all thought our crazy life would certainly take a turn for calmer days.  But life remains anything other than boring.

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Sunday night after the boys were in bed (one of the biggest perks of the school year? Early bedtimes!), David and I were talking about our future.  We discussed different things, but one thing was clear.  We felt our time here at camp would continue for a time and one of the things we discussed was what he could be learning in order to better serve camp.  Sometimes I really fight my limitations and inability to get involved.  David and I would love to be able to work more as a team, especially when he does in-home visits.  I have several web pages rumbling around in my head and long for down time to be able to flesh them out.  But I am only one person and right now it takes everything I’ve got just to be a mom and a teacher.  I absolutely love being a mom and wouldn’t trade it for the world.  I just wish I could go without sleep so I could find time to do everything I want to do. :)

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On Monday I called Adam’s pediatrician about a strange dark line that appeared in one of his fingernails.  I’d ignored it for almost two months, assuming it was some kind of mineral deficiency or minor trauma (he’s a boy, right?) and waited for it to grow out.  It didn’t. According to the all-famous-currently-my-enemy-google, a dark vertical line often indicates melanoma in adults, particularly after a certain age.  I searched and searched and finally found an article on kids that said it is most often a benign (2 out of 19 kids were malignant in one study) mole, but one that must be monitored closely because of the chance of melanoma developing.  There were horrifying articles that talked about shave biopsies versus punch biopsies and the risk of permanently losing your nail because of damage to the nail bed.  And of course the terrible, I had to have my finger amputated kinds of stories. The pediatrician said to go straight to the dermatologist.

When I called, they asked a few questions and whether I was particular about who I would see.  I didn’t know anyone so I said no.  They recommended seeing a physician assistant so that we could get an appointment this week instead of waiting until December and said a doctor would need to come in the room anyway.  My heart dropped a little at the urgency.

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{The view through my kitchen window the morning before Adam’s appointment. I’ve never seen a sunrise create a vertical line like this.  It felt like such a visual reminder that God already knew all about the etiology of the vertical line in Adam’s nail and his future is still brightly colored.}

An hour after I’d called the dermatologist, our renters called and said things were working out for them to take early retirement.  They’ll be out of our house the end of January.  David and I are thrilled for them and so happy that they get to go home to their own lovely home in South Carolina.  But we are equally sad to see them go! They have been the most incredible renters you can imagine!

Monday night’s conversation was about our future also, but it had quite a different tune.  ”So, what are we going to do?” I asked.

“Oh, that’s easy,” said David. “We’ll call Marjorie (our fabulous realtor) tomorrow and put it on the rental market.  If that doesn’t work, we’ll sell it. And if that doesn’t happen, then we’ll move back. I’m certainly not going to lose any sleep over it.  If God wants us at camp, He’ll take care of it.”

I didn’t lose any sleep over it at night, but in the daytime, I’m in the market for some testosterone. ;)

E.ver.y.thing seems to once again hinge on the unknown, just like it did when we felt we were supposed to come to camp and put the house on the market in the first place.

One minute I’m thrilled at the potential of living in Virginia again.  The next I’m cringing at the enormous work of moving out of state again. And I’m wondering what happened to the sure feeling we had about David’s work not being finished here.

But when I strip away all the emotions, it really is as simple as David said.  I believe with all my heart that God has good in store for us.  I also believe that He will show us very clearly what He wants us to do.  I just struggle with the way He seems to show us at the last minute.  I’m the girl who buys a 2015 planner in November. I’d like to know now what is going to happen so I can start planning, you know. If it were up to me, I’d choose most anything over living in limbo.

But maybe that’s missing the point.  Maybe we’re supposed to have this time of unknown to wrestle through what is in our hearts and to have the opportunity to get to know the Father heart of God even better.  If I’ve learned anything in the past three years it’s this.  No matter how long or how dark the unknown is, there is no place safer or more sure than to know you are in the center of the will of God.  Even when it doesn’t make sense.  Even under all the questions that pop up in my mind.  Even in the moments when it all feels like life could get turned end over end … there is an underlying settledness that brings you back to a place of rest.

David has been reading George Mueller’s story to the boys the last few days.  It is a riveting story of faith and of a man who prayed and believed when there was no evidence to go on. Today in Sunday School we talked about Ruth.  I’ve always loved her story, but this time with all that is swirling in my own brain I found it riveting how much Ruth believed God would bless her.  Ruth tells Naomi she will go and glean in the field of one with whom she will find favor.  And in the next verse she is gleaning and it says she happened to be in the field of Boaz.  No conniving.  No asking, what is this owner like.  Ruth simply acted on the belief that God would take care of her.  Fundamentally, that’s what it all comes back to.  If I believe that God is good, I won’t be afraid. Ruth had every right to doubt God’s goodness.  Her husband dies.  Her brother in law dies.  Her mother in law moves home, a completely foreign country and culture for Ruth, because she hears there is once again bread in Israel and Ruth decides to go with her.  And yet when they get back they are hungry and without bread.  Apparently there weren’t any huge welcome back grocery showers happening.  Not only that, her mother in law is so upset at everything that has happened she changes her name to bitter. Yet Ruth chooses to live out of the belief that God is good.

Because He is God, He is good.

We’d love if you’d join us in praying that we would be able to cut through all the voices of our own desires and our own plans for the future and that we would hear clearly what God wants for us.

Adam’s appointment was like having google come to life.  The dermatologist looked at it and said he feels confident it’s a mole in his nail bed.  The fingernail emerges through the mole and thus carries the color with it as it grows.  Come back in six months to have it re-evaluated.  Then he looked at it again.  Actually, come back in four. We went from there to Zara’s appointment with the pediatrician.  He is still very concerned about her.  I’m discovering that having a child with an illness is enough to make you irrational.  Every time I’ve pretty much convinced myself she’s okay, we see a doctor who is convinced she’s not.  The irrational side of me wants to run away, the same way I wanted to take her and run right back out of Johns Hopkins where no one could say things I didn’t want to hear.  Apparently I’m not the only one who feels that way. When we pulled in for her first follow up appointment, I snatched the first available parking space.  Adam looked up and said, “Um, don’t park here.  Remember what happened last time we parked here?”

I mentioned Adam’s dermatologist appointment to her pediatrician who wanted to take a look.  He studied it for a bit as I explained what the doctor had said.  ”That’s very unusual,” he said.  We were ready to walk out the door when he pulled me aside and said, “Let me look at that nail again.  Watch that closely and if he develops anymore of them or a fever bring him in right away.  It looks a little bit like a splinter hemorrhage and could be a sign of endocarditis.”

SERIOUSLY. Can we please just not hear about one more wierd thing that happens to kids for a looooooooooooooooooooong time?


How is Zara?

It’s the question of the week and one I really don’t know how to answer.

Physically:

She seems to be doing well.  She just started crawling a week prior to her hospitalization and she is now happily exploring our house, digging her little toes out against the floor and pushing herself along.  Aside from the fact that she is still helpless as a fish on her back, you’d never guess she has any issues.  Unless you know.  David and I still see infrequent (what we call) mini-spasms.  They aren’t the clear arm raised jerks, but tiny one to two second jerks that sometimes only include her shoulder and head.  Other times her hands come forward and she stares and just like that they’re gone.  I would COMPLETELY think I was imagining things if it wasn’t for the fact that whenever we’re in the same room when they happen, our eyes meet and we know we saw the exact same thing.  Is it seizure activity? We don’t know.  David keeps saying we need to catch it on video but they are so fleeting and not clustered and it feels as though it would be impossible to capture.

Emotionally:

Zara is was traumatized. On our way home from Johns Hopkins Tuesday night we found out a good friend of mine lost her father in a farm accident.  Zara was emotionally very upset from her hospitalization and had a tough time believing anything would ever be normal.  Every time I laid her back to change her diaper she screamed in terror.  She wanted to be held all the time and just seemed very insecure.  On Saturday morning she finally started playing happily on the floor with the boys ….. an hour before she and I headed out the door to Alberta for the funeral.  Again, we were gone for four days and this time without her beloved daddy.  It is impossible to explain to an eight month old what is going on and I watched sadly as our sweet tempered baby girl who rarely cried and mostly did so quietly through closed lips morphed into a baby girl who threw little temper tantrums over anything.

Our return was even harder than the first.  Her little world had been rocked so hard.  We kept on loving her and holding her as much as possible.  Surely the same things that helped her know she was loved and secure would help to restore her little routine of normalcy.  On Friday David was home to work on the house and she settled back down into her sweet self.  I’ve heard an occasional mad exclamation, but they are definitely lessening and I’m hoping her sweet self is back to stay.

Her future:

We are so very, very grateful to not have a diagnosis at this point.  It’s one of those strange cases where the unknown is nicer than the known.  I don’t know when I’ve experienced so many up and downs in such a short amount of time.

Friday night: “Have her in the ER by 5. This looks like infantile spasms.” Down. Around 9, “Her EEG is clear.”  Up.  At 11 from the neurology resident: “Just because her EEG is clear doesn’t mean she doesn’t have infantile spasms.” Down.

Saturday morning: “We are fairly certain this is not infantile spasms.” Up.

Monday morning: “Looks great, you can go home and watch her.” WAY UP. At 12, “We saw something and want to watch her longer.” Down.

Tuesday morning: “Looks great, you can go home, and we’ll follow up in a few months.” Up. Around 12, the social worker stops me to say, “So I see they’re sending her home on Keppra and it’s very expensive.  Would you like me to print out some vouchers?” Me (as my heart plummets to my feet): “Um, sure.” Return to room and google keppra.  Way down. An hour later, discharge papers and no keppra.  Odd communication error. WAY UP.

Thursday afternoon I took her to see her local pediatrician for the prescribed follow up and he stopped me in the hallway. “Oh hey, I was just talking to the neurology resident and they want her to come back in for an MRI.” WAY DOWN. When will this ever end? He checked her over and thought her tone was low and wants her followed by Infant and Toddler Development.  I’m quite sure she was just all chilled out because her tone feels quite like any other baby I’ve held so that shouldn’t take long.

Friday morning call the neurology clinic and they have no MRI orders in the computer. Friday afternoon get a call from the neurologist who is out of town for the weekend (did someone say dedication??) who assured me they don’t feel she needs an MRI and we can keep watching her and follow up in a few months. WAY UP.

Moral of the story: In the middle of a health care crisis, store your emotions in the suitcase and let them come out after it’s aaaaaaaaallll completely decided. Otherwise you may or may not be exhausted.  How would I know?

So that’s where we’re at.  Zara has a follow up appointment with neurology in January.  Until then, we’ll watch. And hope. And pray. And wait.

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She’s been so loved on all her life, she’d have a right to feel smothered.  But now, every snuggle and every kiss is that much more precious.  Every time she sees me, grins, and comes crawling toward me on high speed, I melt a little more as a teeny twinge of what could be pings in my abdomen.

I sniff her neck a million times and breathe deeply no matter if she’s just bathed and smelling like a heavenly angel as Liam describes it or if she stinks like the copious amounts of baby drool that are happening these toothless days.

For now, she’s here.  So alive. So present. So real. So precious.  So engaged.  So mostly without cause for concern.

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Best of all, we’re all at home together.

We really don’t know the next chapter to Zara’s story, but whether or not it gets written the way we hope, we know she will always be so very, very loved.


Zara is being discharged!

Zara got hooked up to a continuous EEG with video monitoring Saturday night at bedtime.  She absolutely hates the process of being hooked up.  They scrub her scalp where the leads go, then put tons of goop on the electrode and puuuuuuuuush it against her head.  Of course, THEY say it doesn’t hurt.  It’s just cold and itchy. But babies don’t cry if it doesn’t hurt so I don’t believe them.  It took forEVER to get hooked up, but they were very careful and wanted us to distract her as much as possible.  I was showing Zara pictures and video clips of the boys and she was barely distracted.  Then suddenly we got to a close up picture of her with Liam.  She stared at him for a second before her arms started waving and waving and she gave a little cry of distress.  She started scratching at the screen, trying to reach him.  More cry of distress and her mouth went down to the screen as though surely she could feel him.  Oh, how she missed her brothers! The next picture she was sitting in her crib, surrounded by the little elephant crib bumper …. another cry of distress.  More arm waving.  Poor baby girl.  How we long to take you home.

EEG electrode placementIt was another restless night of holding Zara on a hard couch only this time with the added benefit of knowing someone could watch all your awkward nighttime antics on video.  It wasn’t until well into it that I figured out they had sound with it and could hear everything we said.

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Zara’s leads came loose throughout the night.  By seven she was missing a few and by noon they were completely gone so we tossed the EEG box on the bed.  It didn’t have any seizures either. :) My parents picked up the boys and brought them to the hospital and what a happy reunion it was! Around 3, Neurology came back to hook Zara back up.  Motorcycle caps are the fashion of the day.

continuous EEG on baby

This time they didn’t scrub her since I’d just washed her hair so it wasn’t the loooooong drawn out process and she didn’t cry nearly as much.  They also threw her a box of leads to play with since she is so enchanted with cords and kept wanting to grab the ones they were using.

We had one more horrible blood draw to get through to confirm that Zara’s white count was really okay.  It felt so mean! Zara has been so normal with anything related to blood counts … no recent infections, nothing that should indicate any reason for her white count to be anything other than fine.  I agreed to do it if we could get warm packs on her for awhile first.  Saturday morning they got her labs with one stick because she was on IV fluids and they used warm packs. They totally agreed but phlebotomy breezed through the door before the nurse could even get in here.  We’ve had great nurses the entire time but our nurse on Sunday was by FAR my favorite.  They’ve all been fabulous about keeping things quiet and low key for her when she’s sleeping and they’ve all been kind and gentle.  Ellen was also very obviously Zara’s advocate.  She put the packs on quickly and told phlebotomy we needed to wait a little.  I asked if they can’t get someone else who is especially good with babies since she is notoriously such a terrible stick.  She said phlebotomy usually has to say they can’t get it.  I KNEW he wasn’t going to get it when I started to lie her back on the bed and he said, “Oh, she can just stay sitting up.” He probed and dug this way and that.  ”I want to see the other side.”  Ellen said, “Only if Mom says yes.” I wanted to HUG her.  I told him he could stick her again but ONLY if he actually FELT something, not just thought he felt something. And we were going to lay her down flat on the bed so we could secure her arm better.  He didn’t see anything on the other side but went back over and claimed he was ready for her other elbow.  I watched in dismay as he dug this way, then that way, clearly NOT having a clue where her vein was.  He got a teeny flash and then nothing just like all the others had.  He kept pulling on the syringe way too hard and finally got a teeny bit of blood which looked very much as though he had blown the vein and was only collecting the blood that was gathering under her skin.  When the needle backed out and he looked as though he was going to stick it back in I said, “That’s enough.” It wasn’t a very quiet command either.

It was all just too much and I was completely done with needless suffering over inept attempts at blood draws.  I’m sure they’re fine most of the time but, PLEASE realize your limits and don’t keep digging on a BABY who is a hard stick.  If there are nurses who can get IV’s in two pound infants then there are nurses who could EASILY get 1/2 cc of blood out of an 18 lb healthy child. I asked Ellen if there was no way to get one of them.  She said they typically have to go through several more steps and phlebotomy has to say they can’t get it, but she was going to make some phone calls and see if she could override the process.

Next thing I knew there was a fabulous vascular nurse literally dancing in the door, turning on some fun Dora music  on her phone, stamping her foot in time to the music, and finding a patent vein in her foot in less than two minutes. Oh, happiness.

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I admitted half-guiltily to the nurse on night shift that I usually let Zara sleep on her tummy at home and I wanted to try it so we wouldn’t have to hold her through another night.  She said, “Oh, I totally get it.  I’m a mom and a nurse and my baby sleeps on his tummy, too.” Zara slept fabulously, waking only once at three.

The funniest part of the day was Monday morning when David was in the crib holding Zara (she had to stay in front of the video camera at all times) and the entire neurology team walked in on rounds. :) Oh the love of a daddy!

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Once again, neurology said there were no episodes! Not only that, instead of telling us we needed to be readmitted for four days of monitoring in the epilepsy unit, they said we should make a follow up appoint for one to three months out, watch her, and if nothing happened we could call and cancel. We were absolutely ecstatically awaiting discharge papers. It felt as though we’d been given something that felt like a near death sentence Friday night to a probably clean bill of health Monday morning! At twelve I was walking down the hall to get a spoon for Zara when the med student stopped me and said, “I was just looking for you.  So it looks like neurology saw something concerning on her EEG this morning when you guys clicked.”

continuous EEG

I stood there in shock and cried.  It was one too many roller coasters on top of too little sleep.  We had the choice to continue monitoring another night or come back for a four day stay.  We easily chose the former.  We were already here, Zara was already hooked up, it looked so much easier.  David kept reminding me that this is what we wanted.  If she’s going to do something odd, it’s so much better for it to happen here.  And they reassured us again that this is not infantile spasms.  Six weeks into the game we would definitely be seeing it on her baseline EEG.

That night he explained it better.  They didn’t see definite seizure activity, but they did catch her jerk on video with correlating eye blink artifact.  Because it was similar to what we had been seeing at home, they wanted more data.  ”Kind of like flipping a coin,” he said. “This time we got heads, but lets make sure we get heads every time.”

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So we got busy clicking for every odd torso stiffening, every jerk, every potentially weird behavior.  Have you ever stopped and just watched a baby play for hours? They make a lot of weird movements! Between one and two in the afternoon Zara did a lot of weird things.  The weirdest was torso stiffening that coincided with a wide mouth grimace, head turned to the side, elbow and wrist flexion, and a tightly clenched fist.  The EEG tech was down to tighten leads and said, “Yes, that lasted three seconds.  We’d never seen the movement in her and have no idea if it’s normal teething behavior or something suspicious but they should certainly have it well documented because there were multiple episodes.  Around 3:30 she did the same shoulder head spasm and partial arm jerk that was most similar to what we saw at home.  We were both grateful she did because if it was captured with no EEG changes, we won’t worry when we go home and she starts doing it again.  By 7:30 we were beginning to wonder if we had any semblance of what normal behavior looks like.

I am so ready to have my baby girl with the brown hair back!

We got the same words today.  They’re evaluating the clicks from yesterday but assuming there were no EEG changes, we can go home with just a follow up appointment in a few months! David and I noticed that they didn’t bother to reattach the lead that came loose overnight and a few hours later they came and turned off the machine.  We’re reading between the lines and believing neurology didn’t see anything. :) They have no explanation for the odd spasms.  I’ve asked every possible OCD parent question possible. Did I drink too much caffeine? Is this related to the remodel when she was exposed to all the dust, the mold behind the kitchen cabinets, the polyurethane stain, and the finish on the floor? Her pediatrician said she was on the fence about needing a lead screen because of the age of the house but decided not to do one so they did one here.  All clear.  There are no explanations.

I think God healed her.

She’s been our miracle baby all along.  It felt like a miracle when she was conceived and another miracle when my molar-like symptoms switched overnight and we saw her itty bitty self on ultrasound a few days later.

Maybe God just did another miracle.

Whatever the reason, we are humbled, euphoric, grateful, awed, relieved, and did I mention thankful?

I feel like one who has been acquainted with the night, but allowed to walk in the sunshine. Friday morning when I was waiting on Johns Hopkins to return my call the phrase, “Yeah, though I walk through the valley of the shadow of death, I will fear no evil,” kept branding itself into my brain.  We were only asked to look at the shadow.  But looking into it’s face, we saw again so clearly that the night is never entirely black for those who love Jesus.  Just as the moon and the stars light the pitch blackness of night, so the grace of God and the prayers of the body of Christ carry you through the darkest times of your life.

We are profoundly grateful to all of you who have carried this burden with us and prayed for Zara’s healing! When you pray, the heavens open.


When seizures change your world

Zara’s world has been turned upside down. About the time she turned six months old she started doing a very odd head nodding spasm while nursing to sleep.  I googled it and finally found someone else who had it and was told it was a myoclonic something and was nothing to worry about.  They said their baby stopped if they broke baby’s latch and the doctor said it was innocuous.  I mentioned it to Zara’s pediatrician at her six month wellness check who frowned but decided it was probably benign.  It never lasted more than ten seconds and happened very rarely.

Two weeks later she started doing a funny muscle spasm in her arm and neck.  She had stopped rolling which we attributed to not liking the result of finding her self on her tummy.  After all, Adam did the same thing.  But now I was noticing that she didn’t even stretch as though she wanted to roll.

You can watch what the arm spasms looked like here, although you will probably want to fast forward to 1:57 which is just before it starts.  Now looking back, it looks so clear.  But back then it was easy to pass it off as innocuous.  They were so quick.  She never lost consciousness.  She smiled and played as though they didn’t bother her. I never really counted to see how many she did at once and I never noticed how frequently they clustered. Plus most days they only happened here and there.  Occasionally she’d have a bad day where she had lots of them, like this day. I thought she acted as though she had a muscle issue … like a pinched nerve or something.  Especially since sometimes when I rubbed her back, she would clench up her shoulders as though it hurt.  How could I have been so blind?

It went on for about six weeks, interestingly seeming to lessen when we got on top of her food intolerances and she started sleeping better again at night.  Somehow I assumed that if she had digestive issues, she’d react to the same things Liam did.  Not so, and once again I found myself doing detective work. At least this time I knew what to look for.  So much for the organic, non GMO quinoa baby cereal.

Suddenly I knew it was time.  I called the pediatrician and made an appointment for Thursday afternoon.  Armed with video clips, I described what was happening.  He instantly said she needs a complete evaluation by a pediatric neurologist.  Her movements looked very much like infantile spasms, he said.  She was showing no developmental delays except for being helpless as a fish on her back which he thought was unrelated (the neurologists here seem to disagree).

We toggled with hospital choices the next morning, knowing we’d have to drive three hours no matter which direction we went, and settled on Johns Hopkins.  The pediatric neurology clinic said they couldn’t get us in for several months and she needed to be evaluated before then so they transferred me to the epilepsy clinic.  They were equally helpful and asked just as many questions about what was going on.  They thought their first available appointment would be December 6th, but they’d talk with the nurse practitioner and get back with me.  Around 10:30 she returned the call and said she really needed to see the video clips.  I had one problem.  Satellite internet and the allotment was out for the month so I was dealing with dial up speed.  I could send them to you tomorrow when I go to the library, I said, or if you really need them today, I’ll drive in to town.  ”You know,” she said quietly, “I’m not trying to make you panic but I need those clips now.”

Like a miracle, the video clips actually uploaded, eking their way along in the next thirty minutes.  An hour later, around 1:15 pm, I got a call from the neurologist instead of the nurse practitioner.  ”This looks like Infantile Spams. We need to see Zara in the ER today.  Preferably before 5:00.” I had only one question. “Should we plan to stay overnight?” “Definitely. I’ll let everyone know you’re coming.”

It was like a bombshell.  I knew instantly that something was very, very wrong.  I had four hours to arrange childcare for the boys, pack, throw Zara’s clothes through the washer and dryer since she was down to pretty much nothing clean, and we had three hours to drive. David had a graduation at camp, but he dropped everything and came straight home.

It was completely surreal.  Our darling baby was sitting in her car seat babbling happily and we were flying to the ER because something was seriously wrong with her??

The admitting nurse took a look at the video clip and said, “Oh that’s Infantile Spams.” After all that hurrying, we’d rolled into the parking lot at 4:45 and by the time registration got us through, it was 5:00.  Apparently we’d missed the neurology team because from then on, all we’ve done is hurry up and wait.  In typical fashion, the weekend schedule is way off and super slow. All the nurses looked at her and said, “Oh, she’s so gorgeous. I’m just so sorry.”  I made the very bad mistake of googling IS. Sometimes Google is your worst enemy.

EEG, infant

Zara cried and cried as they hooked up the EEG leads and then blissfully fell asleep the entire thirty minutes they tested her.  It was completely normal.

They dug viscously seven times and FINALLY manage to get one precious 24 gauge IV in her foot.  They still couldn’t get enough blood for labs and ended up doing a heel prick and squeezing it out.  Her white blood cell count came back so low they put her on neutropenic precautions, just in case.  I chanted, she hasn’t bruised, this is not leukemia quietly to myself.

At 12:30 at night, it feels like the nightmare that just doesn’t end.

The resident came to talk with us and I said, “So if the EEG was clear, does that mean it’s not IS?”

“Oh no,” she said.  It could still be.  Her symptoms are very classic.  They’ll need to do an MRI tomorrow to make sure.

And so Zara went NPO after midnight.  I cuddled her on the couch all night long, waking every time she stirred and being bombarded with reality covered in supernatural grace.

Today. We waited. And waited.

Finally the clouds broke.  They repeated labs, this time with ONE STICK, and her white count was much closer to normal!! Thank you, Jesus!

Around 12, one of the pediatric residents came in to say that not everyone on the neurology team had seen the video clips.  They would be in “shortly” (do you have any idea what that word means in a hospital?) and after viewing it would decide whether she still needed the MRI today.

Excuse me? We have not fed her because why?

An hour later the neuro team showed up to evaluate her and look at her footage.  They nodded their heads meaningfully at each other and said few words as they watched.

Plans changed.  They wanted to do a longer EEG and attempt to catch some of the activity both on video and on the EEG.  Based on those results they would decide whether or not she needs an MRI.  ”So you still feel certain that she has IS even though her EEG last night was clear?”

“No, we feel fairly certain that she does not have IS.  Sometimes the characteristic hypsarrhythmia doesn’t show up in the first few weeks, but it would almost certainly be present after six weeks.”  For the first time, I felt relief at having waited.  Would she have been diagnosed incorrectly and treated wrongly if we would have brought her in immediately? Only God knows.

image

I was ecstatic at ruling out IS. The doctors looked at me soberly and without sharing any of our joy.  I knew they suspected other things and it was too early to celebrate, but knowing it wasn’t IS took an enormous weight out of our day.  So now we’re back to the waiting game. Watching our sweet baby girl babble and reach out for toys and wondering what lurks below her cranium that we aren’t seeing. There is nothing to google.  No statistics to horrify.

Just a baby girl and her naive parents. And a pending EEG.

Thank you to the hundreds of people who are standing beside us in prayer. We feel those prayers surrounding us, giving us courage, helping our eyes to be brave as we hold down our baby girl who is desperately trying to get away from another tourniquet and needle. Helping us to rest and sleep in the in-between moments when our room is quiet.  Helping us not to panic about the what ifs or the this is moments. We believe God is the Creator of Zara’s life and He is also her Healer.  Our Sustainer.

Please help us praise God for such a wonderful, compassionate, knowledgeable team from the pediatrician who recognized a very rare disorder to the neurology doctors who (we think) hold the key to solving this mystery and who did not stop at a full appointment schedule.

We continue to pray for a correct diagnosis and complete healing for Zara.


My New Photography Website

I am THRILLED, like heart-pumpingly thrilled, to announce my brand new photography website! This bit of lovely and the new logo you’ve seen floating around in the last few months are thanks to the fabulous Tiffany Reiff Designs! Tiffany has an amazing eye for creative design. Best of all, she is fabulous at listening to what you want and designing something that reflects your style and personality. If you need a logo, a website, or even business cards, I cannot recommend her enough! Thank you so much, Tiffany!


Kitchen Complete

Annnnnnd, the kitchen is finished! Ok, almost.  A few tiny things lurk in the shadows of David’s to do list like, adjust the doors to align them perfectly and fill nail holes in the crown and toe kick and maybe caulk along the ceiling because the walls and ceiling weren’t built level leaving strange looking crevices perfect for stink bug hibernation.

But, for the most part, she’s complete!

And, oh, how we love this room!

When we were in the middle of the terrible, awful, choking dust from the hardwood floors being sanded David asked me if it’s worth it.  ”Ask me in five months,” I said.  We weren’t finished five days and I already wanted to yell, “It was SO WORTH IT.” It may have taken me more like five weeks to be able to hold my eyes open consistently though. :)

So remember that hardwood floor lot we got? David figured the square footage and was pretty sure it was enough.  He put plywood underneath some of the cabinets to be safe and it’s a good thing he did.  Check out that TEENY TINY pile of leftover flooring!!!!

white ash flooring

Finishing the floor would be the worst part, David told me.  Like usual he was right.  Drywall dust paled in comparison.  The sander was so loud! Late Thursday night we cleaned everything up and he water popped the floor to even out the wood grain.  I’d been mixing and mixing stain samples, trying to get a warm tone that wasn’t too dark or too light or too red or too orange or too yellow. I can’t remember exactly what we used but I think it was something like 5 parts natural, 1 part gunstock, 6 parts cherry and 3 parts early american.  The next morning David put the stain on with an old piece of carpet on the buffer.  It is just shocking to watch color go down.  I always feel goosebumpy, wondering if I actually made the right decision or if we’re going to hate it. :) I was pretty sure I’d gone completely wrong on the floor.  We hadn’t water popped the samples I was working with and even though I did a variety of wood pieces, they all looked significantly lighter than the actual flooring because of the way it took the stain.  It seemed to mellow as it cured though and now that it’s finished, I absolutely love it! It’s so warm and inviting!

white ash flooring

That was a rough night.  Zara reacted to the stain and the finish even though we used a water based finish called Traffic (our favorite!). She could. not. sleep in the house.  I was out on the hammock with her for awhile and around midnight I jokingly messaged a neighbor asking if I could come bum into her house for the night.  She said sure! I told her I’d try one more time to lay Zara in her crib and if it didn’t work, I’d come.  Well, Zara actually stayed asleep.  We put towels by the bottom of her door hoping to keep the smell out.  David put one more coat on the floor and just as he got to the back around 1, Zara woke up crying and crying.  He held her til 5 and I took a turn for awhile.  Poor sweet baby.  Saturday morning David put one more coat on, backed himself back into our bedroom, took a shower and crawled out the window since we couldn’t walk on the floor.  The boys were completely enamored!

crawling out the window

We spent the day in town to let the floor cure and to give Zara a break from the fumes. That was my favorite part of the remodel. :)

From then on, things went so much better.  David began installing cabinets and a huge work group came to help at camp.  From Monday – Wednesday they sent two of the girls to our house to help with the herculean clean up job.  Honestly, I don’t know what I’d have done without them.  The girls on Monday should get medals for bravery.  They walked into a living room that was so full of furniture and construction dirt you couldn’t even walk through it and just tackled it head on.  Pretty much everything on the entire main floor had to be cleaned out.  All the closets got emptied out, but not only that, everything had to be washed.  All the coats, jackets, table linens, bedding … yep, covered in dust.  They vacuumed off the books before putting them back on the bookshelf.  It was slow going, but oh, so rewarding!

Six weeks later we finally found someone who could install the carpet in the living room and bedrooms.  It is so amazing to see the difference it has made in the house!  We extended the hardwood out to the front door and back the hall because that’s where carpet takes the biggest beating.  Since there is no side or back entrance / mud room, all our dirt comes straight in the front door.  And oh, how I love not having carpet under the dining room table anymore! We kept wondering if the kitchen would look smaller with so many more cabinets.  Instead, it seemed to get bigger! It must be a visual illusion because of the height, but almost everyone who walked in was convinced we bumped out a wall and added a couple of feet! I cannot believe how much more efficient the kitchen is.  I put the dishes in from the old cabinets, emptied the dishes and food from the closet in the dining room, brought a few items up from the basement and STILL have room in those cabinets to spare! It’s absolutely amazing! It’s also soooooo nice to have counter space on either side of the stove instead of always worrying that a child will reach up and touch a hot burner.

I still love the white on white.  In a smaller space that so often seems filled to overflowing with noise and dirt and activity, I crave white space desperately.  The warm tones in the floor and silver hardware keep it from looking cold or stark. I’m also loving the texture in the curtains because they make a fun color pop (I should have taken photos on a sunny day because they are actually more of a greenish gold than the mustard color they appear to be on the pictures) and especially because they create a focal point when you walk in the front door.

We are so, so grateful!

And just because everyone loves a good before and after:

Before:

Mar 13_0523

Mar 13_0522

After:

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Dwell.

To dwell in peace.  A heart that stays at rest no matter what happens.


Back to School

Where or WHERE has the summer gone?  I blinked three times and it was the end of August and time to stare at school books again!

We loved our summer vacation so very much.  I heard bits and pieces from Moms here and there who were getting ready for a school schedule again.  Not us.  We’d have happily continued sleeping in and soaking up the sun for another few months at least.  Maybe, until next May when Spring rolls around again, you know.

But it was August and time to start school.

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In the middle of our remodel mess we took a weekend trip to Ohio.  I could not believe how perfectly the timing worked out! My cousin, Tiffany was due to have a baby and scheduled for a C-section on a Friday.  Instead, she went into labor meaning a Monday birth.  We were stalled waiting on countertops anyway so David got to go with me.  It was the most delightful weekend, taking pictures of a darling baby girl and just resting  in a clean space!  My uncle Marvin and Aunt Jan spoiled us completely.  Their house is so clean and restful and refreshing.  After working so hard through dirt and inconvenience, you can only imagine how it felt to sit in a clean room on a comfy couch and be served marvelous food.  Saturday night they took us out for pizza at a local diner that serves gluten free pizza.  Liam pretty much thought he was in heaven!  We never go out for pizza because he’d be stuck so it was incredibly special for our entire family.

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We arrived home, finished up the kitchen Monday and started school on Wednesday.  It was sadly minus the normal fanfare and special feelings.  We just kind of did it.

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In spite of the lukewarm feelings floating around, school has been going pretty well. It’s a bit of a crazy juggling act some mornings trying to teach fifth grade, first grade, and taking care of a baby. Zara is a charm though and since she loooooooooves to be held, I can usually keep school going as long as I can keep the flash cards and spiral bound books out of her reach.  Thankfully she still naps in the morning so when she’s asleep things feel pretty calm.

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We made a few curriculum changes for Adam this year that I’m hoping will be positive. He’s still doing Saxon Math (I am sold on Saxon!) and Abeka Language Arts and Spelling.  We switched to Apologia Science which he and I are both loving! Because I was completely unconvinced that I could manage two grades and a baby and the life that is ours, we chose to do the Bob Jones video course for Adam.  He loves it!

David looked at my load and thought it might be wise to enroll at least one of the boys completely in the Abeka video program, preferably Liam since first grade is the most intense.  I was dubious for several reasons.  While they get rave reviews, I know what too much video time does to our boys.  During a psychology class in college, our instructor explained how much our brains are affected by screen time.  Did you know your brain waves slow down even more when you’re watching a video than when you’re sleeping? So I’ve never hooked up the boys to EEG’s, of course, but I do know that a lot of screen time makes them really restless and much less focused.  I kept wrestling with a few questions I don’t have answers for:

How does video learning affect long term retention?

What does it do to their eyesight?

How does it affect their social IQ?

If it’s true that increased screen time can be related to certain behavioral issues, how does doing school that way not fall into the same category?

I also did not like that Adam has been getting the lion’s share of attention ever since our homeschooling saga started and Zara’s normal baby needs mean she gets second slot.  Putting Liam into the video program felt like I was putting Liam smack into neglected middle child syndrome.  I wanted the chance to spend that one on one time with him.  We talked about it some more and decided to give it a try the traditional way. And if it didn’t work, we could always switch next year.

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At 9:30 when I am trying to teach new concepts to Liam and Adam has a question and I’m holding Zara while she squirms and fusses because she’s tired and I really want to push through a few more minutes so Liam has a tiny bit of independent work and the washer is beeping because it’s done and ready for the next load …. let’s just say I question my idealistic views a lot. But then an hour later Liam snuggles up against me on the couch and carefully sounds out, “All have joy,” while Zara snoozes upstairs in her crib and Adam announces his signature, “Fini, fini, finished,” as he sticks one textbook on the shelf in exchange for another and the towels flap outside in the sun …. let’s just say some moments I think life couldn’t possibly be more idyllic. But Tuesday and Thursday afternoon when it’s time for History class and I get to head upstairs to make lunch, I KNOW we made the right decision for this year.

I don’t feel that video schooling is automatically a bad thing. Not at all.  In fact, some of the most intelligent homeschooled people I’ve met have used it.  I suspect it’s much like other things.  There is a risk / benefit ratio to everything.  Different children respond differently and learn differently. And while the above may be valid concerns, there is NO WAY I can compete with the teaching style and amount of information and review that is presented by someone who has a degree in teaching and an interest in a particular subject.  Adam makes fabulous grades in History and I KNOW it is because they present the information so well and review facts in fun ways.  It’s amazing! I also think the screen issues lessen somewhat as children get older.

I would love to hear from you if you’re doing online or video programming for school and to hear how your children do with it.  And if you’ve done both, I’m especially all ears to hear the pros and cons! Perhaps I could lay all my fears aside and enjoy an easier life! :)

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My favorite curriculum change was Bible.  The past two years Adam has done an extensive Bible Memory program, but no dedicated study.  We found a Bible Study course called Sword Study at the curriculum fair that we really liked.  It’s designed for families and you get age appropriate books, but each study the same book of the Bible.  It beings with an overview (aerial) of the book, then goes into the “street” view before “digging under the rug.” I love that instead of just studying, it is also teaching them how to study! They also have a daily time of prayer using the ACTS (adoration, confession, thanksgiving, and supplication).  It’s been a great thing to see the boy’s ability to talk to God broaden outside of the “thank you for today” and for us to spend time together praying.

David gets the boys up at 6:30 and in less than ten minutes they are upstairs, dressed, and their bed made.  (How do dads do that??) They do Bible from then until 7.  Three days a week, David is at camp by 7:15.  On Wednesday and Thursday he eats breakfast here and goes over at 8.  So either way, he gets to do Bible with them and we eat breakfast afterward.  Sometimes with him. Sometimes without.  It is amazing the difference this has made in our school days.  It is so much easier to get started between 8 and 8:30 when everyone is wide awake and motivated instead of dragging around while their very non-morning person Mom tries to get things moving while inhaling coffee. It may be one of the biggest gifts he gives me this year! It’s an amazing feeling to finish up around 1, knowing we’ve done a full day’s work and the best part of the afternoon is here for them to play.  They don’t take breaks and we wait to eat lunch until we’re finished so it’s usually 2 before I feel as though I can start the rest of my day, but it works for now and I’m loving it!

Sometimes I think wistfully of the days when Adam jumped into the big white van and headed off to school and I wasn’t always inundated with way, way, way more than I can possibly do or think in any given day.  But then I remember the crazy mornings of hurry up to get ready for school and oh, goodness, what am I going to pack in his lunch, and the hyper transition and squabbling that happened when he got home from school and I feel far less wistful.  There really are pros and cons to everything! For now, this is our life and I love it!