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!