oh what to say

today's post is an update on b.  probably a lot of words.  but for those of you only interested in pictures, i'll post some pictures from Christmas at the bottom.  feel free to skip down there if you don't feel like reading.
i am blessed with so many friends and family who regularly ask how b is doing.  and i never really know how to answer.
on the one hand, she is as awesome as they come.

 she is joyful.  and content.  and loving.  and sweet.  and beautiful.  and kind.  and developing.  and seizure free.
and i wish i could stop here.  just focus on her awesome-ness.
but the reality is there is still this huge question mark surrounding her "health" that is not ignorable.
sigh.
in the beginning of december we visited a metabolic geneticist.  probably the best specialist we have seen so far.  the results of the meeting were:
1) two more blood tests.  still waiting for the results.
2) a declaration: her seizures and developmental delay are most likely caused by a genetic disorder.
sigh.  again.
as i drove home from the appointment i found myself not knowing what to pray.  not that i was angry and unable to pray.  i just didn't know what i wanted from God in all this.
there is a part of me (how large that part is, i don't know) that wants one of these tests to come back positive.  if it comes back positive that i can finally know the cause behind all the health issues.  if it comes back positive then i can start to understand her better: her strengths, her weaknesses, her limitations, her gifts.  (and, unfortuantely, this knowledge would probably give me a lot more patience when it comes to working with her on her development).  if it comes back positive then i can know better how to pray for her.  and play with her.  and encourage her.  if it comes back positive then we can stop testing.  if it comes back positive then we can start moving forward.  or so i think... to all the listed above.
but of course i don't want it to come back positive.  i don't want my daughter to have a label.  if it comes back positive then i have to let go of this hope that i hold onto that maybe, one day, she will wake up and it WILL ALL BE GONE.  not that the LORD can't work a miracle, no matter  the results of the test.  but if one of them does come back positive, then my hopes get shifted.  i guess.
bigger sigh.
so now, as i pray, i ask that the LORD would allow the test results to come back just as they should.  and that He would give me, and james, and the doctors wisdom in each step of this journey.  that we know what to do next.  no matter the results.  it's nice to know that i can pray like this.  that the LORD's goodness doesn't change.  that His faithfulness doesn't change.  that His plans are always for my good and for His glory.
so that's where we are, for now.  waiting.  and praying.  and knowing He is faithful.

and as promised... Christmas pics.

family sledding. loved by all, eventually.

have you ever tried putting mittens on a little hand??  requires serious concentration apparently.

b, aunt b and uncle eddie

piano with papa... and a snack

doll stroller, but g doesn't seem to mind

largest mr. potato head, e.v.e.r.

hey, at least the kids were looking at the camera

today i saved?

can we all just take note of the fact that with this post i am attacking "resolutions" number 1, 2 and 4.  that's right, let's start this new year off right!

today i went grocery shopping.  the big trip.  the one where you load up the cart with E.V.E.R.Y. possible food that you could imagine consuming in a week in the hopes that you do N.O.T. have to return to the store again that week, but you know that you inevitably will because you will either forget something in this trip or the store will not have that one vital ingredient for tuesday night's dinner.  please tell me you have this kind of grocery store drama as well.

anyways, with resolution #2 before me (be a better steward of our money), i attacked this trip a little differently than usual.  here's what i did:

1.  i looked through all the local grocery store adds and made my grocery list (and dinner list) based on what was for sale this week.  i did not go to any extremes in this, i just recognized ingredients that were on sale that are also a part of recipes i know.
2.  i typed up this list, listing each food, it's size and price under the grocery store where it is on sale.
3.  left during naptime (THIS IS KEY... NO KIDS ALLOWED ON THE BIG GROCERY TRIP!!!!)
4.  i took my time, walking the isles, comparing my "sale" prices to the walmart prices.  i tried to keep the "price adjustment" foods in a different part of the cart than the "regular" price foods.
5.  found the line with the nice checkout lady.
6.  was prepared to show her the ads, but apparently i looked trustworthy today, so she let me tell her the price as she rang up each item (this was where having them separate in the cart came in extremely helpful).
7.  paid... and wondered if i really saved.

upon returning home the math major in me got a little giddy as i calculated the "savings."  here's what i found:
1.  of the 19 items to be price matched, 6 of them were actually cheaper in walmart.
2.  of the 13 items i did price match, their original cost would have been $30.79.  with the price match they cost $21.81.  savings: $8.98.

IS.IT.WORTH.IT??????

yeah, an extra $40 or so a month results in $480 a year.  not bad.  assuming i have the same kind of savings each week.  that's a big assumption.

but this trip was only possible because 1) the hubs was home to watch the kids, 2) i had the time and energy to examine the store ads, 3) i wasn't in a hurry in the store, 4) my printer was working :)

none of this may be interesting to any of you.  that's fine.  this post is probably just for me as i work through what saving money for my family can and should look like.  this is one option.  but is it worth it?  jury's still out.  i'll give it at least a month before i make any judgements.

and yes, i was very nice to the cashier today!

*** QUESTION:  i usually buy campbell's healthy request cream of ------- soup.  those cost $1.32.  today i bought the great value low sodium kind for $0.59.  i don't mind buying store brand, but i want to try and be as healthy as possible.  is this generic brand filled with stuff that the campbell's healthy request is not, or are their contents pretty comparable? ***
*** PLEASE, if you have any great money saving tips i'd love to hear your ideas! ***

ringing in the new

i guess you could say i'm a new year's junkie.  not that i do the big party thing or ever have any grand plans on this night.  nope, pizza and a movie for the hubs and me tonight.  it's just that i love the idea of taking time to reflect on the past year.  taking inventory of all the good, bad and ugly.  and then deciding what you want to bring with you into the new year.  and what stays behind in the old year.  what needs to change?  what needs to be added?  what needs to be dropped?

i haven't come up with any official resolutions, but i do have some hopes and intentions for the new year.  here's what i've come up with so far

1.  i want to be a more faithful blogger.  notice i didn't stick a number to that?  yeah, not gonna commit to a definite number, but i truly love sharing my journey with whoever decides to read this- i'm just not good at doing it faithfully.  but the new year means that i can start clean and try this bloggging thing anew

2.  i want to be a better steward of our money.  the hubs and i set our budget last night and i got a little testy over the whole issue... ok, i got defensive and mean and then i said sorry.  it's not that i have wild, crazy spending sprees- i truly do not buy much beyond the necessities.  but i DO buy non-necessities more often than i should.  it's a very dangerous downward spiral for me: i see what someone else has --> i want what someone else has --> i think i deserve what someone else has -->  i am not satisfied until i have what someone else has -->  i look for what someone else has and hope that it is on sale -->  i buy what someone else has and am still not satisfied.  please tell me that this happens to you too.  i'm tired of being unsatisfied with what i have.  i am BLESSED BEYOND BLESSED with all my junk.  i do not need anything else.  my kids do not need anything else.  my house does not need anything else.  i want to be satisfied with what i have.  and i think that starts with spending our money more wisely.  which, i guess, means not spending our money at all.

3.  i want to be more intentional with my kids.  lots and lots to say about that, but if i follow through with my first "resolution" then you will hear more about that later.

4.  i want to be nicer to the check-out people at walmart and target.  it's not (usually) their fault that the line is long.  and slow.  and my kids are going crazy.  and i have to pee.  and dinner needed to start 10 minutes ago.  and i forgot to get milk.  they deserve a smile.  and eye contact.  and niceness.  i can show them Jesus in those small ways, right?

5.  i want to love and serve and honor my husband better.  right now i'm not totally sure what that looks like, but i want this to be my goal for every day.  every year.

ok, i keep thinking of more, but i'll start with these.  overall, i want this next year to be a year that i live on purpose.  i want to be intentional about each day.  listening to the Spirit and obedient to His promptings.  i want to recognize that each person in my life is there for a reason, a divine reason and i have the blessing of living my life alongside them.

"be very careful, the, how you live- not as unwise but as wise, making the most of every opportunity... always giving thanks to God the Father for everything, in the name of our Lord Jesus Christ" ephesians 5.15-16, 20

cute pictures, that's all

really, that's all.  just cute pictures.  and if you see these again in your holiday card, don't be surprised.  enjoy.

an introduction, part 2: my boo

today (tonight) it's time to (officially) introduce you to my daughter, b... e... grimmer, or affectionately known as "boo."  for the most part, boo is the reason i started this blog.  this unexpected journey through epilepsy and developmental delay has brought me into a life i never expected- feeling unable and also unworthy of this calling to be the mom of such a special child.  but i've found that talking, or typing, it out helps me to unjumble the mess of thoughts and emotions that regularly occupy my heart and mind.  and thus, the blog.
if you have read my previous posts, you will probably have a decent idea of how she is doing physically and developmentally.  so this post is all about the fun little things that i love about her... the side of life that might change overnight, but for today brings me so much joy.

1.  her profile.  that's it.  i love her profile

2.  her voice.  i think she has the sweetest little voice.  her words may still be in development, but her voice makes any word sound better.  the following videos are probably only cute to me (and maybe a grandmother or two) but it showcases a couple of her favorite phrases... "where'd the baby go?" "all done" and "ok, yeah" (which is her favortie response to ANY question) in that voice i can't resist.

3.  her laugh.  very few people would argue that a child's laugh is one of the best sounds, ever.  and boo's laugh is no exception.  it's cute, it's full of life, it's unrestrained.  and, at times, it sounds like a pterodactyl.  it's true.  there is no better way to describe it.  a full on, breath-in squeal, that might just remind you of a scene in jurassic park.  the video DOES NOT do the laugh justice, but it gives you a taste.  hopefully i will capture the pterodactyl in all it's glory soon.  it is truly an epic laugh.

4.  her personality.  b is truly the most joyful and content person i have ever met, child or adult.  her joy in all things is, well, a gift.  in over 2.5 years of life she has never thrown a temper tantrum.  never.  in fact, i've never even seen her mad.  she finds delight in everything.  sheer joy.  always.

5.  the randoms.  a list of the un-categorizable traits...

* she loves to play "giddy up" with anything- dog, brother, mom, dad, toy... if it fits betwen her legs, it can be a pretend horse.

* she squeals/grunts every time she tries to lift a heavy or awkwardly shaped object (hard to explain but hilarious to watch)

* she sticks out her tongue and says "blaaahhh" at every mirror or window she passes (a game we started playing to help improve her tongue strength... and it stuck)

* she is shy around strangers but will let anyone hold her

all this just doesn't come close to doing justice in describing this amazing little girl.  she's special.  and joyful.  and full of life.  and sensitive.  and tenderhearted.  and loving.  and sweet.  and gentle.  and seizure free.  yes, that last one is what i am thankful for today (all you facebook friends).  it was around this time last year, the week after daylight savings, that b seemed to stop having seizures.  so, today i'm declaring that she has been seizure free for one year.  one long, good, hard, trying and blessed year.  such a fabulous reason to be thankful.  if you have been praying for her, thank you.  today i am testifying that your prayers are being answered.  seizure free!

has me concerned

these are the words that i am so (so so so so so) very tired of hearing.  ... has me concerned.  yes this phrase is still be uttered in b's doctor's appointments.  and it is hard to hear.  tear jerking hard.  i try to be brave but i'm tired of these words.

in the beginning of october we took a 4 hour road trip to visit a pediatric geneticist.  in june our neurologist suggested we visit a geneticist, just to make sure we weren't missing anything genetically related to her seizures.  having been in good health (seizure free for almost a year) and showing consistent development, i believed this would be a "nothing" appointment.  check in, all's good, check out. 

really, erika?  really?  since when have we had one of those appointments since this whole journey started a year and a half ago????

maybe that thinking made the weeks leading up to the appointment easier... but it certainly didn't help when the doctor uttered ... has me concerned several times.

the good:  she has been seizure free for almost a year.  she is developing.  all her tests have come back negative.  her last EEG and MRI were good. 

the bad: she had seizures, source unknown.  she is behind developmentally.  just because one test comes back negative, that doesn't mean there isn't something else that shouldn't also be tested.  the distance between her eyes, the size of her forehead, and the height of her nasal cavity are all bigger than they normally see.  WHAT???  yeah, that last one kind of put me over the edge.  what does all that mean?  well, maybe nothing.  but maybe something.  so we're doing another test.  sigh.

every parent wants to believe their child is perfect.  perfect health.  perfect development.  perfect looks.  perfect health got stripped from me awhile ago.  followed by the development.  all of the sudden, my beautiful baby girl had freakishly large eyes and forehead and nasal cavity.  i hate saying that, but it is an honest confession of where my mind went.  i went to bed that night thinking that everything about her face was crazy-like out of proportion.

and then i saw her the next morning.

and the LORD spoke psalm 139 over my heart,
for you created my inmost being; you knit me together in my mother's womb.  i praise you because i am fearfully and wonderfully made; your works are wonderful, i know that full well.

beauty.  that is all i see.  inside and out.  special.  chosen.  joy.  beauty.  my baby girl.

if there is something different about her face, the LORD has chosen it for His specific purposes.  if there is something different about her health, the LORD has chosen it for His specific purposes.  if there is something different about her development. the LORD has chosen it for His specific purposes.  for my good and His glory.

really, this is where i want to stop, but just so you know what's next... we wait until december when she will see a metabolic specialist.  this doctor will examine her occasional tremors (in hands and eyes), which was noticed by the geneticist.  he will decide if he wants to do any testing, in regards to the tremors, and then we will also complete the test ordered by the geneticist.  and then... we do life.  we return home and do life and continue to watch God's plan unfold in our lives.  the doctors may be concerned, but my God is not.

an introduction, part 1: i'm so proud of him

here he is, the hubs.  my honey.  my best friend.  sooo cute, right?

so let me introduce you to him:

1.  he hates chocolate (result: that empty bag of oreos was eaten entirely by me)

2.  he was a division 1 swimmer for butler university

3.  his favorite chick flick is "sweet home alabama"

4.  he has house clothes- a soft shirt and either basketball shorts or sweats that he dives into the minute he gets home.  it's a bad day when the house clothes don't get worn at least once

5.  watches every minute of the tour de france every summer

6.  the first baby he held was our daughter

7.  is an extremely gifted teacher, especially with sports

8. he doesn't like to talk about hypothetical situations, but he does like to day dream

9.  he likes to go unnoticed

10.  has competed in one full, one olympic distance and two half ironman triathlons.

and this last point is why i'm so proud of him.  a week and a half ago he finished his second half ironman triathlon.  after a 1.2 mile swim, a 56 mile bike, a 13.1 mile run, a flat tire, a broken derailer (apparently this is a very important bike piece?), and a torrential downpour, he finished in 5 hours and 29 minutes.  not quite the time he was hoping for.  and while he is disappointed, i couldn't be prouder.  this race showed who my husband is: he is dedicated to what he loves, he fights to finish no matter what the obstacles, he strives for excellence in all he does and is not satisfied with anything less.  he's my ironman (gotta throw some sort of cheesy line in here, right?)

at the start of the race... if you can't tell, that's nervousness and annoyance written on his face :)