Friday, August 22, 2014

Can you do us a favor?

It's about time for a new post!

Caroline walked for the first time in January 2013.  She was two and a half years old.  During the following June, we were enjoying our first summer since she was born with no scheduled surgeries when she had her first seizure.  They weren't occurring very frequently so we were hopeful that they were just a fluke.

We got through the fall with just a couple seizures and over the Thanksgiving break, she started having absence seizures.  Through December and January, she started having several different kinds of seizures and they were happening more frequently.  While she certainly wasn't developing like a typical three year old at this point, she had stopped doing all the things she had learned to do - no words, no gestures, no eye contact.

We were admitted to the hospital at the end of January and after three days of a brain study and a sedated MRI, she was diagnosed as a beautiful baby girl with epilepsy.  She was put on a medication to control the seizures that worked for about three weeks but turned her into a child with no joy.  I did not see her smile or hear her laugh for almost three months.  She would go several hours at a time incredibly mad and there was nothing we could do about.  All while she continued to have seizures.

At this point her seizures turned into drop seizures.  We got her a helmet but after two drop seizures (with the helmet on) and a couple of pretty bad injuries to her face and mouth, we had to get her a hard helmet with a face shield.  It took two weeks for the helmet to be made and those were the two hardest weeks I have had in a while.  She had to be contained all the time.  If we weren't touching her, she had to be in her bed because we were terrified that she would have a bad head injury.

The new helmet gave us a new sense of security but our daughter was not progressing.  There was no sign of any cognitive development and she still had around 10 seizures a day.

We went back to see the neurologist and he decided that we needed to go back into the hospital for another brain study.  This time, we would investigate several other options to stop the seizures ranging from new medications that could take away her peripheral vision to brain surgery.  The most discouraging news from this stay was that during this EEG and the one in January, Caroline's brain was constantly having epileptic activity and there was no way to stop it.  As far as they know, there is no medication that will help.  How in the world could she learn anything with this constantly happening in her brain?  For the first time in her life, I felt defeated.

Despite this news, the actual seizures that she did have weren't as bad as they were afraid of and instead of those more aggresive treatments, we decided to just try another medication.  This new medicine has had absolutely no effect on the seizures.  She still has between 6 - 10 seizures a day and has to wear her helmet full time.  Getting off the other medicine however has brought Caroline's personality back. She started smiling again and even started laughing after several weeks.

Unfortunately though, she has continued to not develop.  She has small periods of time where she seems to be aware of what is going on around her but she is still completely nonverbal, doesn't make gestures at all, won't make eye contact, and shows no signs that any of that will start anytime soon.

During the last hospital stay, the doctor mentioned the Ketogenic Diet.  While they don't know much about seizures, they think that seizures travel through carbohydrates.  The purpose of the ketogenic diet is to starve the body and brain of carbs and force it to use fat for fuel and therefore gives the seizures nothing to travel through.  The studies show that this treatment is really the only thing that has any kind of success rate in controlling seizures.  Over half of the children that go on it have at least a 50% reduction of seizures.  Many become seizure free.  The downfall of the diet is that it is really hard to be on.  You are basically feeding your child butter and cream . . . all the time.   And, you have to be in the hospital to start the diet.  Because it can be such a shock to the system, doctors and other medical staff have to closely monitor you to make sure your body can handle going into ketosis.

After a lot of research, prayer, and a couple visits with the neurologist and dietician, we have decided that we are going to fully commit to this diet for Caroline.

You can't imagine what it is like to watch your child repeatedly fall down and convulse on the floor.  There is absolutely nothing you can do about it.  The diet will be hard.  Really hard.  But nothing will be as hard as seeing her go through this.  Nothing can be as hard as seeing your child "disappear" after having a few moments of an "awakening".

So, Caroline will be admitted to the hospital again on Monday.  The plan is to be there for three days and then we will continue the diet for at least three months.  If it shows that it is working to help stop or reduce the seizures, we will continue it for probably two years.  Jesse has started making some "keto" meals for her and we have been extremely hopeful by how she has responded.  Just that she is willing to eat it is a huge success!

Here comes the favor part.  When Caroline was younger, we had an army of prayer warriors by our side.  We felt the presence of God through our journey and we saw miracle after miracle.  Healing after healing.  While I know so many people still pray for her, I realize that I need to do better about letting people know specific ways to pray.

If you are able, will you say a prayer for our sweet baby girl and this new chapter in our lives?  Will you pray for her hospital stay and that we are receptive to the guidance of the doctors and nutritionists?  Will you pray that God will guide us and our decisions?  Will you pray that we forget ourselves and surrender to God's will?  Will you pray that Caroline will have complete and total healing with this diet?  Will you pray that Caroline will call me from the hospital room and tell me that she can finally think clearly? (okay, that one might be a stretch but it couldn't hurt to ask :)!)

My new favorite song from Selah is called "More and More of You".  As I type this, I claim every word that is sung in this song.  Will you claim it with me?

More and More of You - Selah
We have had enough of getting everything we want
We are weary of living this life just for us
Lord, forgive us of seeking Your hand and not Your face
Come and empty us Father, we're desperate in this place

Holy Spirit, fill us with Your fire
Give us Your desires
Hold us close to You
Holy Spirit, give us revelation
A healing visitation
Nothing else will do
We want more and more and more and more of You

You have given us so much more than we deserve
You deliver us by the power of Your word
God, we lift You up giving You the honor that is Yours
Thank You for Your love, Father, this is what we're living for

Holy Spirit, fill us with Your fire
Give us Your desires
Hold us close to You
Holy Spirit, give us revelation
A healing visitation
Nothing else will do
We want more and more and more and more of You

Oh the love that covers us
Oh the Savior's mercy
Oh the blood that makes a spotless bride

Holy Spirit, fill us with Your fire
Give us Your desires
Hold us close to You
Holy Spirit, give us revelation
A healing visitation
Nothing else will do
We want more and more and more and more of You

Saturday, January 12, 2013

The day she walked

Every parent feels a huge sense of pride at each "first" that their child has.  The first time you hear them cry when they are first born, the first time they smile, the first time they laugh, the first time they eat solid foods, the first time they sleep through the night, the first time they walk.

I have to say though, each first Caroline has is a different feeling for me.  When I was pregnant with her, we were told she might not have any firsts so each one is especially significant.  When she was born, her future looked pretty rocky.  Her firsts that we were so proud of were the first time she made it through a successful surgery, the first time she was extubated, the first time she was able to breath without a cannula.

With a child like Caroline, we don't know if she is going to have all the same firsts that most babies have; sometimes we ask, "Will she ever?" instead of, "I wonder when she will . . .".

When the boys were growing up, I prayed for them to be extraordinary.  I prayed for them to be different than the other kids.  Think different, be different.

With Caroline, I still pray for her to be extraordinary, but I also pray for her to be normal.  I pray that she will get to have all the firsts that the boys were able to have.  And, everytime she does, I feel as though she can take on the world.

I came home on Monday night in a rush to get packed for a conference.  I asked Jesse if Caroline had PT that day and he said, "Yeah, she was able to get her to take a couple steps."

I'm sorry!!  What?!?!?

So, I stood Caroline in front of me, took about three steps backwards and she started walking toward me.  I backed up a little more, and she kept walking.

You know how you feel when we win an event in the Olympics that we were the underdogs for?  And when our National Anthem plays, there is this lump in your chest because you are so proud and you feel the tears coming?

No?  Just me?

That's the feeling I got for the first couple steps.  Once I could tell that she was really walking, that lump in my chest exploded!!!  I started bawling, snorting, screaming . . . you name it, I was doing it.

I have never felt such a strong, uncontrollable emotion.

This is one of about 100 videos that I have made since Monday.  Taking a video of her walking never gets old :)!!


She still doesn't prefer to walk but she will walk anytime you ask her to.  She is getting better about standing next to a piece of furniture and walking away from it too.  That was a huge success.

One more first in the books!  One proud momma!!

Saturday, November 24, 2012

Whew! What a Fall!!

I have been horribly negligent with the blog.  But, looking back on the past couple of months, I can see why.

This fall, we couldn't decide between soccer or baseball for the boys so, we went with both.

I'm pretty sure this was after his first goal but it's been so long it's hard to remember.

Watching the game the best way possible.

End of season pizza party.  We loved our team!!

We loved baseball just as much.  There is just something about sitting outside on a cool Texas evening watching your boys play baseball that is just heavenly.

Not sure which one this is but he sure does look like he knows what he is doing.  

And then, of course, Halloween snuck up on us.

We are pretty serious when it comes to pumpkin carving!

Hopefully you will be able to tell what these are when you scroll down and see the boys' costumes.

Is she not the cutest Pink Power Ranger you have ever seen.  And, I am not crafty at all but I think I did a pretty good job with this costume.

Sweet cousins!

And again, they got a ridiculous amount of candy.  Almost all of it is still sitting on the kitchen counter.

Just a random cute sibling picture.

And Caroline learned how to drive.  Man, where does the time go.  She's pretty proud of herself for sure.

And finally, we decided to head up to Iowa to spend a quick Thanksgiving with this awesome lady.  We had a really great couple of days.

My aunt was so patient with the boys and taught them a little piano.  We are happy to announce that Jack AND James can play "Mary Had a Little Lamb" and almost all of "Jingle Bells".

Caroline could not be outdone and is pretty proficient at playing Mozart's Requiem.

The aunts and uncles did a great job with Thanksgiving dinner.

And we finished the day off with a game of catch with Papa.

It was a super fast 4 days but we are really glad to have gone.  I remember taking these long trips when I was a kid and those memories are some of my favorite from my childhood.  Would have been better if we had portable DVD players back then though.  Just sayin'.

Looking forward to a couple of slow weeks and then a very slow Christmas break.

Sunday, August 12, 2012

Happy Birthday, Sweet Baby Caroline!!

15 things I LOVE about you, Caroline . . .

I LOVE that you love books.  Looking over and seeing you flipping through the pages of a book always melts my heart, no matter how many times I see you do it.

I LOVE that you pull your passy out to say something and then put it right back in.  You already seem so deliberate with your "words".

I LOVE how happy you get around your brothers.  No one can make you laugh the way they can.

I LOVE, and Jack does too, that you have blue eyes and blond hair.  He is very fortunate to have a little sister that looks just like him (since his twin doesn't).

I LOVE that you love Cheetos as much as I do.  I wish you were a little nicer about insisting on getting them but . . .

I LOVE that you surprise people . . . well, doctors mostly.

I LOVE that you love Elmo.  I'm sure he would rather you not eat his face but I know he loves the hugs you give him while you're doing it.

I LOVE the way you get around the house.  Not being able to walk yet has not stopped you one bit.

I LOVE how you pose for pictures.  
Enough said! (those are her teeth marks on the table by the way)

I LOVE how you make other people light up.  Your smile is contagious!

I LOVE how you wake-up so peacefully in the morning.  There's nothing like waking up to you giggling and laughing.

I LOVE watching you try to climb over things that seem way too big for you to climb over.  No obstacle is too big for you.

I LOVE how you make "raspberries" in church.  I know I shouldn't, but I do!

I LOVE that you "speak your mind" and stand-up for yourself to your brothers.  You are certainly not afraid to let your opinion known.

I LOVE that you are an instrument of Christ.  The world is a better place because God allowed you to fight your way to where you are today.  You have changed the world baby girl!

Happy, Happy Birthday to the MOST AMAZING 2 year old I know.  I am blessed and proud everyday to get to call you my daughter!