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.