Friday, July 18, 2014

The Good and The Bad

We've had some good days. We've had some bad days.

Good news is....Luke hasn't had any noticeable seizure activity since April. Truly grateful for that! And we don't take for granted any seizure free day. We are fully aware of the reality we could be facing in these regards and we thank God for graciously keeping Luke seizure free.

Overall, he is going fairly well.  Luke LOVES summer. He loves being outside, loves walks, loves swinging at the park, loves swimming and any kind of water play. He loves fireworks. He loves listening to birds in the morning. For many reasons, summer is by far his favorite season! So, we've had some happy days recently. 

Last month, Luke's neurologist changed his seizure medication. We are now on medication Number 2. The first one, Keppra, didn't seem to be the right one for Luke. Truthfully, I would have been ok staying on for longer. But when we described Luke's occasional meltdowns/rages, the doctor didn't feel comfortable leaving him on it. Keppra is known to cause significant behavior issues and so the doctor felt like it may just continue to get worse. 

So we weaned off of  Keppra and he is now on carbamazepine (Tegretol).   Sadly, the occasional meltdowns haven't subsided at all. 

I guess meltdown is an ok word. I don't really know what they are called in the medical world. (maybe a special needs parent reader can fill me in!) 
Basically, it goes like this:   
We'll be in the middle of everyday life.....doing anything really....playing at the park, riding in car, at a restaurant, watching TV, on a walk, at the grocery store....just whatever. And all of a sudden, for no apparent reason, an otherwise happy Luke just FALLS.APART.  He starts screaming, crying, kicking and causing all kinds of self harm.....pulls his hair, bites his tongue, scratches his face, seeks out a hard surface and bangs his head repeatedly. It is like nothing I've seen before.  It is so intense.  It doesn't happen everyday, but far more often than we would like. At this point I would say maybe twice a week. 
If we happen to be home when it's rough,  but manageable. If we're out and about when it happens...YIKES! 
There is no talking him out of it. No discipline that can take place. Honestly, I probably wouldn't understand it myself if it weren't for having a child who does this.  It is so bizarre and so intense and so incredibly hard to manage. 

So, say a prayer for me! And for him! When we are out and about, it's usually me with the three kids on my own. And so you can imagine the challenge. Luke has to be restrained (never a fun thing to do) because of the risk of injury. He is strong and seems to have super sonic strength during an episode like this. I'm pretty sure he could just about knock himself out, if he weren't in some way restrained and kept from hurting himself. 

I videoed Luke's most recent meltdown (they last about 20-30 minutes) and will show Luke's neuro at our next appointment. As terrible as they are, I do want to "wait and see" if this side effect will subside with time. This hopping around from one med to the next is so very much NOT what I want to do. It's rough on a little 5 yr old body. 

I hesitated to share in detail all his current struggles. But because there are other special needs parents following (and we all learn soooo much from each others' experiences), I wanted to be sure to give a good picture of what like is like for us right now.

Despite some grumpy times (and an almost total refusal to wear shoes these days!!!) Luke is enjoying his summer.  We are hearing lots of good language, lots of laughing and happy smiles. 

Luke's favorite holiday....July 4th!!

He's doing so good this year on the "kid-kid swing' (his words for big kid swing)  He is fearless and loves to go really high! He'll be our roller coaster lover for sure!

Wednesday, July 16, 2014

Heavenly haircut

So, the boys haven't been thrilled with getting haircuts...well, really...ever!  Even when they were little guys and we took them for their first professional haircut, they didn't enjoy it. Tolerate? Perhaps. Enjoy? Definitely not.

Caleb's first haircut

Luke's first haircut

Since that time, though, Luke has grown to HATE haircuts.  We've traumatized a handful of professionals trying to accomplish the task of getting Luke's hair cut (an event that occurs maybe 3 times a year). God bless 'em. Looking back, we should have tipped them waaay better than we did.

Anyway, we've settled on the fact that Luke's haircuts will just have to be done at home.  Maybe you have a child or have seen a child who dislikes haircuts. Luke is about as extreme as it gets. I'm not sure "hate" is even a strong enough of a word. He falls apart. He screams and thrashes and his hands/arms/legs/feet become weapons against the one trying to cut his hair.

It's a really, REALLY hard thing to do. Rarely do we wake up and say, "Oh, let's give Luke a haircut today." No, it has to like be on the calendar. We prepare emotionally for at least a couple of days. Ha!  I probably sounds ridiculous. Especially for those of you who can waltz into a cute little kids hair salon....plop your kid in a cool helicopter seat, sit back, take pictures and give them them a lollipop at the end.  Haha!! This is SO far from our reality.

We were pleasantly surprised  (read: shocked!!) when we gave Luke a haircut this week. And when I say "we", I mean Andrew.  The guy has superhero powers. He really is the "Luke Whisperer." :)
We still don't know if it was just the right combination of snacks, videos, tone of voice, lighting, air temperature??  The way Andrew was holding the clippers?? Seriously. you begin to take inventory of every.single.detail so you can (hopefully) replicate the experience next time!

In progress....                                                                                   picture break.....

                                                                        .....almost done!

Whatever "it" was, Luke sat in the chair and never cried once!! No tantrum. No tears. Hardly any objection at all.  Almost feels like a miracle!

Thursday, May 1, 2014

We Trust in the Name of the Lord Our God!

This won't be a long update, but we want to share some disappointing developments with Luke.

On April 19th (Easter Eve), Luke had a long, severe seizure. He was at home. Actually, I had just left the house and Andrew was at home with all three kids.  Luke had been sort of lethargic that day....didn't seem to feel real well. He took a bath and I had gotten him to bed. It was early.... about 5:30pm. But he was sooo tired. He climbed up into his bed and was asleep by 6pm.

I checked on him one more time before I left and he was sound asleep. I had been out of the house for about 20 minutes when Andrew called.  Never the call I thought I would get.

There were various indicators that I won't get into...but by Andrew's estimation, Luke had probably already been seizing for 10-15 minutes before Andrew found him.  Andrew had to check Luke's vitals more than once. Suffice it to say, it was a really bad seizure....the kind that had Andrew thinking Luke may have passed.

On the phone, the two of us are frantically saying out loud to each other the directions on how to administer the emergency drug. Why didn't we pay better attention when they were showing us how to use this?
We never thought we would have to use it.

Luke s-l--o-w-l-y started to recover. And by recover I mean fall into a deep sleep.

And all we could do was weep.

I guess there's no point in sugar-coating any of it. The truth is, we were heartbroken. And devastated. And so very disappointed. And very scared.

We eventually got in touch with Luke's neurologist, who said pretty much what we expected.
This is too much. This kind of seizure is taking you into a danger zone. It's too much. "You have to medicate",  he says.

So, we are.  Luke's been on a daily antiepileptic drug for about 10 days now.

"It's the safest one", doc says.

It also comes with possible, significant side effects. We are waiting that out......waiting to see how Luke will react to it.  He hasn't been on any AEDs since he was 1 yr old. And, we don't have a good history there. One drug made his seizures worse. Another one had the potential side effect of causing blindness....but it didn't work anyway, so he wasn't on that long.

But, I'm reminding myself....that was then and this is now. Luke was having an EnTiReLy different kind of seizure back then. We're in brand new territory now. So, time will tell what will work and what won't.

I'm still left with the question of why now?  As the doctor rattled on about various things that trigger seizures, I'm just staring blankly back at him thinking Luke's had plenty of opportunities to seize over the last  four years...and he didn't.

He's had two surgeries, been extremely sleep deprived (he didn't sleep through the night till he was almost 4... most nights he was awake for 2 or 3 hours stretches), been very sick with high fevers, taken two long road trips to Montana. All of these common triggers never once set off any kind of seizure activity. The EEGs always confirmed it for us. They were perfectly normal.

Doctors have always cautioned us that with a brain bleed as bad Luke's was, issues can arise throughout his lifetime. Scar tissue develops, things can just change.....

Why this and why now?

We don't know.  When the seizures stopped in 2010, it was so out-of-the-ordinary. So wonderfully clear that God had intervened. To have gone 4 yrs with no seizures is truly miraculous!

All we do is continue to trust. God is able and we know He is with us. Thank you for praying with us.

Luke was really out of it for about 2 days after the seizure. But I was able to catch him in a happy, cooperative mood and he was ready to sing. :) This is him singing a kids song, "We Trust in the Name of the Lord Our God."

P.S. I'll keep you updated on this site throughout the coming month (and summer months) about how Luke is doing.

Friday, January 24, 2014

Luke's recent seizure

About a month ago now, in the early morning hours of Dec. 21st, Luke had a seizure during his sleep.
It presented as a focal seizure.  Some irregular breathing, his right leg twitching rhythmically, he vomited all over his bed. All this while sleeping.

By God's grace, Luke was sleeping on the floor in our bedroom that night. My parents "happened" to be visiting. This was their last night staying with us, after having been with us for a month. So, they were staying in Luke and Caleb's bedroom and the boys were sleeping in our room. I was already in "light sleep" mode, as I had our newborn, Hannah, next to our bed.  I wake up to hear Luke breathing loudly....strangely....
I sort of look down at him, confused.  Truthfully, a seizure was far from my mind.

Luke had been seizure free for almost 4 years. 46 glorious months without that beast of a Seizure Monster in our lives. If you've ever seized or seen a loved one seize, you know what I mean when I say Monster.

I scramble around for my cell phone....eager to get some light on Luke's face to see what exactly he's doing.

Is he having a bad dream?

Did he catch a cold and get congested during the night?

But, as I put my hand on him to try to wake him up, I felt his leg.  Back and forth. Back and forth. 

Still confused, I try to arouse him from his sleep. Nothing.  Next, I notice he had vomited.   At this point, I realized that something pretty major was happening and most likely it was a seizure.

I start calling out, "Andrew. Andrew.  Andrew, wake up! There's something wrong with Luke here.  Maybe a seizure."

Andrew pulls Luke up off the floor and we bring him to the couch to try to get him to wake up and talk to us. Luke is mostly unresponsive to our efforts though. He cried some...but mostly just a whine/groan type of thing. Once he got agitated enough with the bright lights in the living room and our talking to him, then he started fighting us a bit. That's when we notice that the right side of his body was in full paralysis. His right leg and arm were stiff. The right side of his mouth drooping.

Go time.

"We have to take him now, Kristi!!"

Your house (or apartment in our case) has that "feel" to it in the middle of the night. I had grown accustomed to it again, having been getting up with a newborn in the night for the last month.

Dark. Quiet. The hum of the fridge running. Street lights streaming through the window. Peaceful.
Suddenly, in the quietness, there's chaos.

Talk about scrambling. I run to knock on my parents' door and let them know we're leaving for the ER. Andrew scrambles to find Luke's coat and socks.  I'm quietly thanking God that despite laying right next to Luke on the floor, Caleb is sleeping soundly and oblivious to all this madness.  I realize that our trip to ER may last for hours and that my nursing newborn will have to come with us.

As we scramble out the door, the only soundtrack now is the sound of teary, desperate prayers being offered up in the darkness. Not in any language we can understand...but one the Spirit helps us to pray.

We drove down Lake Shore Drive to downtown Chicago in record time. Probably 14 minutes flat...though it seemed much longer, of course.  We arrived at Lurie Childrens Hospital and had attentive staff and a team of people ready to help us.

Then commences The Great Medical History conversation. It's a doozie!  Whenever we're asked Luke's medical history, it was always starts with raised eyebrows and a deep breath. Here we go. Start from the beginning. It's a long story, to be sure.

Various people come to talk to us. ER docs. Neurologist. Nurses.  We sit and we answer questions. And we watch as they all do their thing...get IV lines in, take vitals, rub Luke's head while talking to our sweet boy. And we cry.  Cause we were sure we were done with whole nightmare. I can honestly say, I thought we would never have the Seizure Monster knock on our door again. But, here we were. Answering the same questions, facing the same fears. Despite the four-year reprieve, it all felt too familiar.

They ordered a CAT scan to rule out a stroke. That came back normal. They monitored his paralysis, his breathing, his blood pressure, his heart rate....the usual. After about 2 hrs. he regained movement on this right side. Luke was sound asleep during this whole time. But we could tell the right side of his face was looking more normal and the hospital staff aroused (read: annoyed) him enough to get him to kick them with his right leg.

Like most hospital visits, there was mostly just a whole lot of waiting. And praying. And calling. And emailing.   Thank you so much for those of you who prayed for us that night and the next day....and in the days that have now followed. 

After 2-3 hours of testing and waiting and monitoring, the ER neurologist finally came in and said, "Well, given your sons history, this is what we would expect for him to do.  The infantile spasms resolve and then these kids usually go on to develop a different kind of epilepsy....or many different kinds over the course of their lives. We recommend starting him on Keppra and we'll send someone in here to train you on using diastat, the emergency drug you administer should he ever have a seizure lasting longer than 5 minutes and you're waiting for emergency services to get to where you are."

Of course, it wasn't quite this cut and dry...and she was a kind lady. But, basically, the message was, "Oh, you have had four years of seizure freedom?  That's great!  But, yeah, it looks like he'll end up doing what we would expect him to do.....seize. So, let's just get him on meds."

If you've followed our journey, you can imagine how hard that was to hear!

We wanted to shout, "NO!!  He isn't just 'going to have seizures'!! We're not gonna just 'start the meds'!!"
We didn't shout, but we did communicate those feelings to her. We asked if it would be totally unreasonable to not give him the meds for now and to wait to talk to Luke's neurologist and get an EEG first. She agreed that that wouldn't be totally unreasonable.

Dec. 21st isn't a great time to have a seizure that requires an EEG and follow up with your neuro. It seemed EVERYone we needed to get appointments with was out of town or otherwise unavailable for weeks.
Which is why it has taken us so long to get an update out.

Here's where we stand now:

1) We are treating this seizure as "first time offense" so to speak. Because it has been so long since he has seized, we are considering this Luke's first seizure. If any neurologically healthy child seized once, they wouldn't medicate. They would wait and see. That is what we are doing with Luke.

2)  Luke's neurologist, who we really like, agreed to let us hold off on the Keppra (the daily anti-seizure drugs).  If you're asking, "Why don't they just give him meds? I've known lots of people who take seizure meds and do just fine." Good question!!  The answer is that back in 2009, Luke responded terribly to anti-seizure meds. None of them helped the seizures and one actually made them get worse. They also tend to have pretty intense side effects, none of which you would want to deal with on an ongoing basis. Luke is really beginning to make some great strides in communication and cognitive skills. The seizure meds tend to put kids into a delay their development.  We, of course, are striving to go in the other direction.  He is already so delayed in so many areas....a drug that would further delay development doesn't sound like an answer to us.

3) There are some circumstances surrounding the seizure that make us wonder if it wasn't somehow provoked. He didn't have a fever, but he had been fighting a bit of a stomach bug. He had recently had a flu vaccine (the flu mist). We have had a lot of changes in our family over the past couple of months.  The holidays brought lots of changes to our schedule and probably less sleep than normal. Any of things...or perhaps all of them together, could have been just a little too much for Luke, according to his neurologist. Sometimes with kids like Luke, while they don't actively seize, their seizure threshold is low. They would seize more easily than another kid might.

4) His EEG came back ABNORMAL. We just got this news a couple of days ago and it was disappointing news to hear.  Since April of 2010, Luke has had 3 completely NORMAL EEGs. This is the first time it has been abnormal in almost four years. The results of the EEG read that focal discharges were seen in the right temporal lobe. No clinical evidence of seizures was seen. Simply, this means, abnormal discharges were observed, but he didn't physically show evidence of a seizure while he was hooked up to the EEG machine. But he is what they would consider "at risk for seizures".   As I said, this is a definite change from the results we just had less than a year ago (Feb. 2013), where the EEG was totally normal.
The EEG findings are a bit strange and don't really coincide with what we saw during his seizure event.  His right leg twitched and his right side went into paralysis.  Typically, you would think you would see abnormalities on the LEFT side of his brain, in order for his RIGHT side to be effected. So, in that way....we are kind of left guessing. An EEG is a good tool for neurologists to use, but they are always quick to tell us, it isn't a perfect test. We take these results and tuck them away...but are still in "wait and see (and Pray!)" mode.

5) We haven't seen any other seizure activity since the Dec. 21st event. We thank God for that!

Here are some things you can pray about.  I hope to update here more often about Luke and his progress. It's been a long time since I've done that.  For now, here are the best ways you can agree with us in prayer.

* First, pray that Luke never has a seizure again. As we said in earlier posts about this...We believe Luke was and IS healed of all seizure activity.

*Please pray that we as parents and all of his teachers, therapists and other school staff will be very attentive to Luke and not miss anything that we should be seeing.

* Please pray for peace in our hearts. We want to be attentive, but not fearful. Fear is not of God. And, despite the recent events, we want to walk free from fear and continue trusting in our great God!

Thank you all so much for your love and prayers. It means so very much to us.

Wednesday, October 31, 2012

Go Wildcats?

We're on the move.....

To Northwestern University!!  We'll be pioneering Chi Alpha there.  We're super excited!  I won't go into much detail cause the details are here.


I do want to say, that you know you must really be called by God when you're willing to wear purple and cheer for the Wildcats!

Sweet Lord.

I did tell God I would do anything for him.


P.S. I realize that possibly only my family or people from Kansas will understand this post. :-)

Wednesday, October 17, 2012

Planes, Trains and Tractors. Oh My!!

Caleb and Luke (and their parents!) have had some fun memory-making moments in the last few months.

The boys got to experience their first train ride in Chicago (technically, just the metro, but when you're 3, it's a train. :) )

We also visited the fairgrounds here in southern Illinois and the boys got to hop on all the tractors. Pure joy!

And, finally, we got a visit from Uncle Rob.  He flew in to see us.  Flew,
 as in he was the pilot. How cool is that?!!  Pretty stinkin' cool if you ask us.
Enjoy the pictures!!

Caleb riding the Metro from Evanston to downtown Chicago

"This is sooo cool!"

Yep, that Giordano's...don't covet. :)   And a sleeping Caleb. 

Luke standing inside one of the tractor tires at the fair.

They had so much fun!

Caleb at the fair

There's Uncle Rob!!!


Squeals of excitement happening at this point....

Luke is headed out to meet Uncle Rob!

VERY windy day, but here we all are!

Caleb is really into taking pictures on is own now....

Nice shot, Andrew!

Paparazzi....they never leave you alone, do they??

Getting ready to take off...

Just thought I'd throw this one in....This is Luke before his tonsillectomy riding in Lightning McQueen.  He loooves Lightning McQueen. 

And here's Caleb who created his own "Cleaning Machine".  Mommy was pleased. ;)


Tuesday, October 2, 2012

Because I'm Four Now

I can't tell you how many times we've heard the words, "Because I'm four now" since last Wednesday.
The boys turned four years old last Wednesday and boy oh boy, Caleb must feel like a new man! :))

Here are a few samples...

"I can fold that for you, Mom, because I'm four now."

"NO! Let me do it. Because I'm four now!"

"I'm not afraid of the dark because I'm four now." (yeah, right!)

"I don't say 'renember'...I say 'reMEMber'...because I'm four now."

"I can eat all of this cookie because I'm four now."

I'm sure you get the gist. It's endless. He's SO proud of being 4!

It's pretty adorable, if you ask me.  I'm loving him being 4, by the way.  I know, I know.....but what about my baby?? Isn't it sad to see my baby grow up?

It is.

It's just I positively LOVE 4 and 5 yr. olds. It's my favorite age!!  And, truthfully, 3 was just hard.  The "terrible twos" were nothing compared to the threes.   So, mostly, I'm sorta glad to be coming out of that stage!

If kids could go from like 15 months to 4 yrs. old overnight, I might be willing to have 12 more. ;)
It's the 2's and 3's that are killer, I think.

 Well, we had a great time celebrating our big boys!!  Here are the pics. Enjoy!!  (WARNING:  You will be scrolling for a while.  You're welcome, grandparents.)

Caleb opening presents...

Look what I got!

What could it be?!

A playdough factory!  Thank Papi and Nama!

Luke's going for the cinnamon rolls...

Just look at this bite I'm about to take!

Mmmmmh.....this is SO good!

Pioneer Women recipe. They are as good as she claims they are.  They are NOT low-calorie. :)

Luke remains totally disinterested in opening gifts.  Just not there developmentally, I don't think....

Buut at least he's not crying...we've made some progress ....

Once they're opened, he loves seeing what's inside!  Cool puzzle!  Thanks Nama and Papi. 

Luke loves letters and words!

Enjoying their birthday morning together...

Caleb LOVES this rescue center

He skipped the cinnamon rolls and asked for an apple. Whose child is this???!!!   

I think Aunt Kari is responsible for his healthy eating habits!

While tearing wrapping paper isn't his thing, Luke LOVES "reading" his cards..

He carefully inspects each one.

He's so cute as he opens them and says, "Happy Birthday!"

Figuring out the playdough factory

The Curious George cake. Yes, I made it! :)
The decorated table....before the storm!

I just had to post another pic of the cake because it survived the torrential downpour!  :)

All of the place settings almost blew away, but we saved them with water bottles to weigh them down. Nonna and PawPaw Hoggard got the boys the Curious George stuffed animals. They love them! 

The crew!

Happy Birthday to you!!

international student friends

Luke loves balloons!

Wow! Look at that!

I think Caleb kind of likes that he gets to open all of the gifts!

A train from Miss Joann!

 Trying to calm Luke down and tell him he doesn't have to open the gift. Ha!

Poor kid. I have to find a way to make unwrapping less traumatic for him!

Love our friends!

Seven guests....4 nations!