hello?

I wish I could say that my absence means that I am getting lots of projects done, but it actually means that I have been enjoying my busy summer with the kids!  So far, it has been full of baseball, t-ball, softball, golf, swimming, VBS, visits with friends, and simply playing!  I wouldn't trade it for checking off any to-do list!

While I am checking in, I thought I would update you on Bayleigh.  I can't remember if I posted that she is finally walking...it's amazing, too!  She motors around here like crazy now, trying so hard to go as fast as her brothers and sisters do.  That little milestone, of course, has come with new challenges.  She is into EVERYthing.  And she's fast.  She started speech and occupational therapy a few weeks ago and is doing beautifully!  She is repeating words we say to her, although still not using more than a couple intentionally.  I can still see a difference between her and other toddlers her age, but I don't think I will be able to for long.  I am optimistic that the therapy is going to progress quickly.  Now that she is not concentrating so much effort on trying to walk, she can focus on the "little" things.  She is growing like a weed, too.  In fact, she "outgrew" her medication titration schedule!  Little stinker started having more seizures than usual because she is growing so fast.  A little tweak to the schedule, and we are back in business!  She is doing fantastic, and I stand in awe of God's goodness.  Prayers have certainly been answered!

A more detailed update on the fam coming soon...

art?

I have loved art since I was a very small child.  I think that is what is so wonderful about the piece I just created...it makes me all giggly like a kid.  It has been a labor-intensive project that I first began about NINE months ago when I saw an inspiration piece on another blog.  I wish I had bookmarked the original site, as I now can not find it.  But you can check out a similar project here.  I love the ginormous button that was used for the O in the first full set.  It and the Z are my faves.  {I'm thinking my huge W might need to get some white stripes after seeing this!}  The second set is one I did use for inspiration for my V, and I love how it turned out!  As I learned, there is no limit to what you can use and do for this project...just have FUN with it!

Here is my finished piece, nestled behind our breakfast nook table.  It is 5' x 5', which is HUGE, but this wall was huge and EMPTY and well, just plain BORING!  It is PERFECT now!  {Forgive the horrible lighting...it was dark when I shot this, and I just didn't feel like taking another picture.}

I would love to show you each piece close up, but I don't want to bore you.  So, I picked a few favorites...

X - This is the favorite of most who have seen it in person.  But it is so simple and cheap.  It is one of those unfinished wood pieces from Hobby Lobby.  It was broken, and I got it for a song.  All I had to do was glue a screw into it to hold it together!  I love that it's hanging all funky...broke up the sqaure-ness of the piece.

Q - This is my personal favorite.  It is a picture of a bowl of alphabet soup with a spoon in it decopauged onto a piece of scrap lumber.  Yes, I took the photograph.  ;D

 M - This is my girls' favorite because it has "sprinkles" (sparkles) on it!  Bri helped me create this one and the other pink sprinkly one.

  

E - The boys like this one.  I simply painted this onto a 5x5 pre-made chunky canvas.

I can not even begin to describe how fun it was to create this!  I love that each of the kids got involved and had opinions about what looked good and what didn't.  Here is a list of what each letter is and where it came from...

A - ampersand sign cut from scrap MDF, painted pink and bejeweled

B - paper mache piece made for me a few years ago by a friend

C - a horseshoe

D - premade MDF from Hobby Lobby, covered in scrapbook paper

E - premade canvas custom painted

F - found frame with Michael's premade piece, painted green and embellished with a scrapbook flower

G - premade MDF from Michael's, painted purple

H - premade MDF from HL, covered in scrapbook paper

I - Carleigh's old ruler

J - premade MDF from Michael's, painted silver and clear sparkles

K - premade resin from HL, unaltered

L - premade unfinished wood from HL, polyurethaned only

M - premade unfinished wood from Michael's, painted green and bejeweled

N - premade MDF from Michael's, painted robin's egg blue

O - found round mirror

P - trivet given to me by my parents a few years ago

Q - photograph of alphabet soup decopauged to scrap wood block

R - tin art from HL, unaltered

S - Photoshop design printed on paper

T - cross I snagged from our cross wall (I think it's from HL, too!)

U - premade MDF from HL, covered in scrapbook paper

V - inkjet printing on scrapbook paper and frame I had on hand

W - cut from scrap MDF (thanks to my handy honey!)

X - unfinished wood scissors, painted silver

Y - premade MDF from HL, covered in scrapbook paper

& - premade resin from HL, painted red

Z - premade unfinished wood from HL, painted pistachio

NOTE: All the items purchased for this project were discounted 50% or more (with the help of in-store discounts, coupons, and/or gift cards).  All paints were what I already had on hand (thanks to my sweet friend Mandy for giving me her stash when she moved!)  I estimate that I spent approxiately $60 on this project.  Spread over 9 months, that was a bargain!

checking in

First, life has been busy.  This time of the year always is for our family, but it has been made even more so by my school schedule.  I am happy to report that I successfully completed my first semester of nursing school!  Now, to get the four older kiddos through this last month of school!  I can't believe I will be the mother of a middle schooler next year!  Time is racing by!  Our summer looks to be full of baseball, basketball, and golf!  I am THRILLED that I have the time off to enjoy the kids and to just be still for a bit.

SUMMER!!!!

I haven't updated on Bayleigh because I have needed some time to absorb our most recent ventures with her.  She has gone through a series of developmental tests that measure her motor, cognitive, language, and social skills.  We were shocked at how low she scored and really dismissed the first round of test results, believing she could have just had an "off" day.  But the second round of tests confirmed the first, and so here we are.  She is operating anywhere between a 6 and 12 month old developmentally (with language/comprehension being on the lower side and gross motor on the higher side).  Today, the neurologist told us that in his observations of her over the last four months, he has seen very little advancement.  The exceptions are physical growth and gross motor (she is walking some!  YEAH!)  Next, she will start occupational and speech therapy and have her hearing and vision tested.  We aren't expecting anything less than normal for her hearing and vision!  She is having as few as 2-3 seizures a day, and occasionally up to 15.  She will continue to have a medication dose increase for the next 8 weeks, which is when we return to the neurologist.  He has asked us to consider chromosomal testing, but I am on the fence about it right now.  While it can tell us a great deal about her prognosis, it will not likely change her treatment.  The up side...it's not nearly as involved as the specific genetic test she had previously.  Aside from all of this, Bayleigh continues to be a delight to our entire family.  She is so full of joy and life!  She is growing and otherwise very healthy!  We are so blessed by her.

Once again, thank you all for praying for our family.  We are truly amazed.

negative!

We got the news today...Bayleigh is NEGATIVE for Dravet's Syndrome!!  Praise the Lord!!  Not only is the news itself exciting, but it was delivered two weeks earlier than we expected, so no more waiting!  Unfortunately, this doesn't change her diagnosis, but it does mean that there will not be additional complications added to what we already expect will happen.  It also means that we do not have to worry about any of our other little people developing the seizure disorder Bayleigh has!  YES!!!!

So this is what has been going through my mind since I got the news...a song my little people have been singing since even the older ones were very little...

Oh, the Lord is good to me!

And so I thank the Lord

For giving me the things I need

The sun, and the rain, and the appleseed.

Oh, the Lord is good to me!

Amen.

HE is SO good!

JOY!

The LORD is far from the wicked, but he hears the prayers of the righteous.

~Proverbs 15:29~

I know that many of you have been praying for Bayleigh, and I see those prayers being answered daily!  I am so humbled.  She is down to having 2-3 seizures PER DAY!!  This has been happening for a week now, so it is no fluke!  We are praising God HUGE right now.  He is so much bigger than all of this worry I have had in my heart.  I have been resting in the perfect plan HE has already laid out for Bayleigh...whatever that may be.  I am excited to see what He has in store for her.  It must be BIG!  I personally am praying she defies everything we have been told.  What a story she will have to tell later!

the LORD is good to me

My heart is so heavy today.  Heavy not for myself, but for Bayleigh.  While nothing about today's visit with the neurologist shocked me, it still was not what I thought we would hear.  I have been doing some reading about her disorder and have been very careful about the sources I have chosen to rely on for information.  But still, I was alarmed at what I was reading regarding her particular disorder.  On Friday over the phone, the neurologist confirmed what I had read.  Today, he added a couple more wrinkles to the issue.  I will try to make sense of this, although I can't say that I have completely grasped everything yet, so bear with me.

When Bayleigh was initially diagnosed, her EEG was typical for petit mal (or absence) epilepsy.  So...we'd get her seizures under control with medication and then she'd grow out of it by adolescence or earlier.  The diagnosis hasn't changed much, but her age has put her in the atypical side of the seizure disorder (I mentioned this a few posts ago).  Since then, a few other things have further solidified that classification.  This now means that she will not likely grow out of it.  It also means other seizure types could present as she grows older...making it increasingly difficult to keep them all under control.  {She is currently being treated for two different seizure types.}  With AAE (atypical absence epilepsy), cognitive delays should be expected...we are already witnessing this in her.  We will not know how mild or how severe the delays are until she is at least two years old, but we will begin testing immediately.  Depending on the severity, she could be at age level by the time she is old enough to start kindergarten.

Here is where we are for now...
Blood was drawn today to test Bayleigh for a genetic condition known to be linked to her type of epilepsy (it is also linked to Carleigh's seizure type).  The results take as many as four weeks to get back.  Over the weekend, we started Bayleigh on a second medication that will have to build up in her system and incrementally stepped up before it will begin to work...we should know in a few weeks if it is doing its job.  We will have another EEG in 8 weeks.  At some point, things should settle down enough that we only have to see the neurologist every four months.

Why the heavy heart?  Our spirits are being attacked.  I personally can handle all of the dents and dings this is going to cause in Bayleigh's life.  I can handle that my baby may be behind her peers.  I can handle more serious seizures.  I can handle being her chauffeur if she is never able to drive.  I {me} can handle it.  But will she be able to handle it?

This is how I feel right now...

How long, lord? Will you forget me forever? How long will you hide your face from me?  How long must I wrestle with my thoughts and day after day have sorrow in my heart? How long will my enemy triumph over me?

~Psalm 13:1-2~

I know that He has not forgotten me.  I know that He is with me right now as I type this.  I know.  It doesn't take away the hurt I feel for my baby.  And it doesn't make me any less angry.  Chris asked me today after our visit with the neurologist what I thought God was trying to tell us.  I did not have a definitive answer, but I do know that Satan would very well like for us to believe that we are to blame and that we are being punished.

So, this is what I am going to say when I hear him whispering this lie to me again and again...

I will sing the Lord's praise, for He has been good to me.

~Psalms 13:6~

thrifty finds

I have become more diligent in shopping at thrift stores and deeply discounted sales for my kiddos clothing.  I know, I know...I should have been doing this long ago.  And I have...just not faithfully.

Here are a few things I found today...for a total of $23.17.  Most of this was NEW WITH TAGS!!  The pictures are terrible (thanks, iPhone!)  Sorry about the orientation, too.

I can't wait to refashion one of those white sweaters!

Bayleigh update

First, THANK YOU to all who have been praying for our girl!  The MRI came back normal!  Praise JESUS!  I am beyond excited!  This means there is no serious underlying issue causing Bayleigh's disorder!  What's next?  The neurologist will explore one more option...genetic testing.  Since two of our daughters have had a seizure disorders that have the same genetic markings, he will test Bayleigh.  That can help with two things...one, there is gene therapy that can be done for HER, and two, it will show us if Bella and Bri are at risk as well.  Since Bayleigh's disorder typically doesn't present until 6-12 years of age, they could still develop it.  We still have to get her on the right medication and dosage.  I am praying that next week's bloodwork indicates we can keep her on her current medication...it has the fewest and least serious side effects.  So far, we have only seen drowsiness and occasional mood swings in her.

A huge weight has been lifted today.  HUGE.  We are truly blessed.

But let all who take refuge in you be glad;

let them ever sing for joy.

Spread your protection over them,

that those who love your name may rejoice in you.

For surely, O Lord, you bless the righteous;

you surround them with your favor as with a shield.

~Psalm 5:11-12~

Normal

Sunday evening.  Our home is usually abuzz (is that a word?) with our preparations for the week.  Not today.  It is eerily quiet, and there is almost a melancholy feel in the air.  Maybe it's just me.  Or maybe it's the fact that early tomorrow morning, Bayleigh is undergoing an MRI and we are scared.  It doesn't help that no one reassures us that this is a just-in-case kind of procedure that will show that all is well.  It doesn't help that everytime I talk with her neurologist, he reminds me that she is atypical for this disorder type and that there are many unknowns.  Nor does it help that she is maxed out on her medication, yet she is still having 20-25 seizures per day.  There isn't much else to say really.  I find it very difficult to lay my worry aside, even though I know my God is capable of healing her little body completely and making her new again.  In an instant, he could make her normal again.  Normal.  NOT atypical.

Then I am reminded that normal is relative and that the Lord did not create us all equal.  He did, however, make us each UNIQUE...with different gifts, different spirits.

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future"

~Jeremiah 29:11~

Over the course of the last five weeks, I have meditated often on the verse we selected for Bayleigh's dedication...

For we are God's workmanship, created in Christ Jesus to do good works, which God prepared in advance for us to do.

~Ephesians 2:10~

None of this comes as a surprise to the Lord.  He created Bayleigh to be just who she is.  So...this could be Bayleigh's normal for a very long time...no matter how I might try to will it to be otherwise.  I have to remind myself everyday that He has it all under control.  Tomorrow will be the same.  I will wake up and pray the same prayer for her...for restoration.  And I will pray the same prayer for myself...that I will remind myself who Bayleigh is in HIM...and that is all that matters.

and life goes on

It's been over a week since Bayleigh was diagnosed.  Feels like an eternity...especially being snowed in for four days!  All I have to do is watch her...to watch all of the kiddos.  Honestly, I am just not sure what to think about the whole situation with Bayleigh.  There are good days (she has few seizures that we see), and there are not so good days (she has lots of seizures that we see).  Yesterday was a good day.  Today was a not so good day.  She had the longest seizure she has ever had, and it scared the life out of me...I kept wondering when it was going to end.  What's long?  Oh, about 15 seconds.  Yep, that's it.  Just 15 seconds...forever when you are a mom watching as your baby girl's eyes roll up under her eyelids.  And you don't know why.  What we have noticed is that many of her seizures are in response to something.  Playing peek-a-boo.  A kiss on the cheek.  Being tickled.  Splashing in the bathtub.  My heart breaks seeing that our interactions with her cause this.

So, still no answers.  Her medication dose will increase next week, and then we see the neurologist again to see how it is working.  I'm not convinced it is yet, but I have been told we have far to go with the medication route.  I have been researching and studying....trying hard to stay away from sources that may be alarming.  The internet is stupid.

The homefront is quiet right now, although that has not been the case for most of the week.  The kids are nuts...more so than usual.  And nutty kids make for a nutty mom.  If there is no school on Monday, I may be farming them out to our neighbors for cheap labor.  Heh.

freakishly calm

Time crept for us this week.

Most of you already know that I am not one of those parents who freaks out about every rash, runny nose, or scrape my children get.  Even with my firstborn, I was pretty laid back.  Don't get me wrong...I did a healthy amount of freaking out about stuff.  He, after all, was very sick for the first couple of months of his life.  And I was a first time mom.  Freaking out and new moms...they just go together.  My laid back nature has brought me through a new experience.

A few weeks ago, I began to notice that Bayleigh would occasionally zone out....just stare blankly at what seemed to be nothing for about 10-15 seconds.  Then she'd shake it off and return to whatever she was doing before she zoned out.  At the time, I definitely thought it was odd, but dismissed it.  For all I knew, she could have learned to take a quick nap with her eyes open.  Cool trick, right?  Later last week, I began to notice the zoning out several times in a day, but they were also coupled with her eyes rolling up and her eyelids fluttering.  The whole incident would only last about five seconds, but I knew something wasn't right.  I began to document as much as I could what was going on with her.  By Monday morning, I had grown concerned enough to talk to our pediatrician about it.  I simply explained what I was seeing and how often.  I was totally unprepared for his response.  He thought she could be having seizures.  Seizures?  All I knew about seizures were the type Carleigh had when she was a toddler...they were scary.  These were not that kind.  He said we could wait another couple of days to see what happened.  But by the next evening, they had begun to happen more frequently, and I was growing concerned.  I e-mailed him again.  This time, he requested to see her first thing the next morning.  I was worried, but still not freaked out.

Off we went Wednesday morning to see our awesome pediatrician.  While we were there, he witnessed one of her little episodes.  He wanted her to be seen by a neurologist.  After the two of them talked, it was decided Bayleigh should be admitted to the hospital for testing.  I could tell our doctor was trying not to alarm me, as I had never witnessed him so concerned.  My concern was growing, but still I wasn't freaked.  Chris freaked.  He was in Tulsa at the time and could not get home right away.

So the girls and I got things in order and headed to the hospital.  By the afternoon, we got our angel to sleep and started our first EEG.  We found out that afternoon that the EEG was inconclusive.  She had not seized during the 15 minute test.  Since I knew something was wrong, I was quite discouraged.  I thought we were going to go home with no answers.  But the neurologist suggested we do a sleep deprivation EEG the next morning.  The lack of sleep would increase the frequency of the seizures and allow them to capture record of them.  I was calm when we went to bed.

We kept our girl up late and woke her early the next morning and kept her up for a few hours before putting her down for a nap.  She had already had 20 of these little seizures before the test began.  A little freaked on the inside, but calm on the outside.

We were left alone during the test and given instructions on what we were to do.  We woke Bay after 45 minutes of sleeping.  Not fun.  We had to keep her from pulling on the EEG wires for as long as possible.  That ended up being a couple of hours, praise God!  We could actually see that what we were witnessing was being recorded.  While I would love nothing more than for her to not have these seizures, I was grateful she was having them while they were recording her.  Here is our girl playing with her daddy...

 This is some of my charting...it was crazy.  I didn't chart during her naps or EEGs...and then I actually just got tired of doing it altogether.  We all knew she was having them by that point.

The last EEG captured both sleeping and waking seizures, and the doctor was able to give us diagnosis...epilepsy with petit mal seizures.  This is probably the least serious type of epilepsy she could have (at least in my opinion).  But what does this mean for us and for her?  Well, first it means that we have to medicate her for at least a few years.  We have to watch her closely (and those who care for her will have to watch her closely) because when she has her seizures, she loses consciousness.  Even though it is only for a few seconds, she could injure herself if she is walking, running, riding a bike, etc.  In addition, her case could be different than others who have been diagnosed with this.  Turns out, our little love is an unusual case.  Babies don't typically develop this type of seizure disorder, so there may be some unknowns.  Further testing could shed some light on why she had developed this so early or at all.  For now, we are clinging to the common diagnosis, and that is that she should grow out of it by the time she reaches adolesence.

Through this whole process, Bay was so precious.  We were sprung from the hospital last night.  Then I freaked.  I cried the whole way home.  I could chalk it up to lack of sleep or even tears of joy and relief that it isn't more serious (though serious enough), but I know that I simply freaked.  I just couldn't hold it in anymore.

Bay fell into her bed without a peep and woke just now (at 9:30am).  I didn't sleep as soundly, but was thrilled to be back in my bed!

What's next?  We will visit with the neurologist in a couple of weeks.  Then we get to see him every 4-6 months for as long as she has seizures.  She will continue to have an occasional seizure even on the medication, though the frequency should be significantly less.  Once she gets settled into her medication regimen, we will have an MRI done to check her brain anatomy.  There is possible genetic testing in our future as well.  (That's another long story.)

Thank you to everyone who has been praying for our family.  We have felt them, and are so grateful for the support network we have in each of you!  God is so good.

beautiful chaos

It is hard to believe we are so deep into January already!  The last couple of weeks have really flown.  I started back to school last week, and it is OVERwhelming to say the least!  This is my first official semester of nursing school, and they start us off running.  Aside from the administrative requirements I have had to meet, we started clinicals on the first day of class, and have already taken exams!  If the rest of the semester is anything like these first two weeks of class, it is going to be over before I know it!

In addition to starting school, I have started training for my first half marathon...the OKC Memorial Marathon on May 1st.  Yikes.  I have never run more than 6 miles at a time, so this will be huge for me!  I am excited, but also very, very nervous!

So all this adds to what is already a chaotic life with a big family!  But there is peace.

I hope I can say this when it's all said and done...

I have fought the good fight, I have finished the race, I have kept the faith.

2 Timothy 4:7

a new year

I have not made any New Year's resolutions this year.  I usually don't...I am one of those statistics you read about.  You know the ones who start out the year strong and have broken most, if not all, of the promises made by February?  I do, however, always set goals for myself and for my family.  I am excited to report that most of our goals were reached last year, and those that weren't have just become goals again this year.  Yes, some of those goals are regarding health and fitness, but they do not involved us killing ourselves in the gym.

2011 is special, however, as it is the first year we have focused the first few weeks on spiritual health.  Our church body has been called to fast together for the first part of the year.  Chris and I have begun the Daniel fast, which is a 21-day fast from meat, dairy, and sugar.  There is more to it than that, and you learn more about it by clicking the links below.  You can begin this fast at any time.  Prayerfully consider joining us and starting your new year off putting God first!

Lifechurch.tv Live First message
Daniel Fast
Daniel Fast blog
YouVersion 21-day Fast reading plan

what I'm learning - Christmas edition

Very few people shop during the extended store hours.
My children will not keep secrets from their siblings.
Some Christmas ornaments are edible.
Some Christmas food is not.
My kids will bring home ten times the amount of art they normally do.
By January 1st, I will pay in blood for child volume control (by volume, I mean loudness and not how many children I have...we all know how that one has turned out.)
I will always like giving more than receiving (although I received two of my favorite gifts of all time this year!)
One can never sleep too much.
Santa gets gas just like everyone else.
Small children do not really care what is inside the package...they will inevitably end up playing with the package.
Take two cars when traveling to grandma and grandpa's...we will come back with more than we took.
There is a reason the Dirty Santa game is for adults.
Light-seeing is fun until a kid gets sick in the car and you're not close to home.
Do not put breakable (i.e., glass) gifts under the tree in a house full of short people who shake presents.
Send Christmas cards every year.

Spending too much time on things that do not matter (shopping, decorating, partying) takes away time from things that really do.
Video everything....when you have children, everything is AFV material.
Use every opportunity you have to tell people about Jesus (they are more likely to listen at Christmas!)
Give meaningful gifts.
Too much of a good thing can cause diarrhea.