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.