Sunday, December 13, 2015

It's never as easy as I think it's going to be.  We ended up taking the whole week plus a bonus weekend! By Thursday afternoon he had not seized so I thought we were throwing in the towel.  His medications had been adjusted and readjusted to try to 'force' a seizure and it just wasn't happening. It was a strange feeling to be disappointed because he HAD NOT had a seizure. His doctor asked if we could stay a few more days to see if it would happen because we really need to know where his seizures are coming from in his brain.  Since we were already there we decided to go ahead and stay.  

His last EEG was in February of 2013, I believe.  In the past, Luke's EEG's have been fairly normal which is interesting given the structure of his brain in the first place and his epilepsy.  His EEG has changed, though, now showing 'epileptic spikes' coming from the back of his brain - the occipital lobe. These spikes are coming at all times we discovered no matter what medicine he was on and how much of the medicine...meaning that as the doctors messed around with his medicine this week he consistently had epileptic spikes with more activity during sleeping hours. Even without having a full blown seizure, the doctor was fairly certain that was probably where his seizures originate from.  It's really interesting to us, though, because that is one area in his brain that is NOT affected by polymicrogyria (PMG).  So it's essentially just about the only area that is not malformed but it is the area the doctors felt his seizures were probably coming from.  

Anyway, I will try not to turn this into a short novel!  So by Saturday I thought that the whole week had been in vain.  They had an answer...well probably they did but they didn't know for sure.  Frustrating!  Luke had been a champ but I felt bad because he hated having his head wired and rewired and was ticked off when they had to place his IV or even touch it.  He was tethered - literally - to a wall in ONE room for an entire week.  He did really well with it but I was really hoping for solid answers so that the likelihood of having to repeat the experience was slim!  

Of course, as you can probably guess, he finally had a seizure Saturday night.  His seizures are for sure coming from his occipital lobe of his brain.  The scary part that I found out today was that while he was laying on me and sleeping, according to the EEG reading he had been seizing for TEN minutes without me even knowing it.  He sometimes vomits after or during a seizure and he choked a little and I looked at him and saw his eyes deviated.  Keep in mind that we were in a room where someone was watching him via video at all times - not just me - and neither of us knew anything was amiss.  His seizure started in one side of his occipital lobe and stopped and moved to the other side.  All together he was seizing for about 45 minutes.  

As he gets bigger his seizures are becoming even harder to recognize.  He was having conversations with us and laughing and tooting (truly one of his favorite activities!!) while he was seizing.  His eyes were deviated the entire time he was talking to us. The doctors who were on call were not convinced and had the neurologist who had been seeing him all week pull up his EEG at home to read it before they administered emergency medication.  They kept telling me his seizures were atypical which we already knew!  

Lately before he has a seizure he has been telling us things like he feels funky or the lights look strange or something looks strange.  The doctor said that with where his seizures are coming from that would make a lot of sense.  

Since he is now having a lot of epileptic spikes in that area with or without medicine, his neurologist also wants us to get him tested by a neuropsychologist.  From what I understand she wants a baseline cognitive test to tell us if these spikes will eventually start causing regression.  This will help her determine how aggressive she wants to be to stop the spikes.  

Surprisingly, we went into the hospital on three medications and we walked out on just one. His EEG didn't show a change when he was on or off of those medications.  So we are going to try it and see how it goes.  We are nervously excited because the less medication we can get by on the better!  For now we have to wait and let his little system get back to normal.  If he continues to have break through seizures his doctor now has more information to decide the best way to treat his seizures.  

Our little charmer made lots of friends in the hospital and also decided he wanted to be an RN, too, like all of our wonderful nurses!  Everyone did a wonderful job trying to make his week go by quickly!  Thanks for all the texts, emails, visits and well wishes.  We are so thankful for all of our support!!!
Ms. Heather was wrapping his puppy's head just like him!  He was helping with the tape.

Ms. Amanda certainly needed help taking blood pressure!  His puppy was very healthy!

Trying to figure out how to bust out of the 12th floor....

When you're stuck for a week, you always have time for a little yoga!

Both puppies ended up needing EEG's.  They were very, very brave.

This is what intentional sleep deprivation looks like :(    

He wanted everyone who came in to write their names on the board.  Ms. Micah was one of our EEG techs and he added her name to the board.  

Monday, December 7, 2015

Hunkered down!

Things have been going really well for Luke.  He's is over a third of the way through kindergarten and loving it!  He is socializing more and more with other kids which is probably my favorite thing that is going on with him.  His teachers, therapists and aides have been working hard to make sure he is successful.  He doesn't like to say hi or bye for some reason and sometimes doesn't respond when he is spoken to.  One thing they've done is when he responds he gets points and after a certain amount of points, he gets to see one of the school's two therapy dogs - that is great for him!!  

Last year one of our big concerns was writing.  Now he's writing and almost - ALMOST - willingly! It's not always his favorite thing to do but he's doing it.  He's still behind in this area but he's gaining skills quickly.  He knows all of the teachers first and last names and I'm not sure that he's NOT calling them by their first and last names.  For Halloween, he decided he wanted to be one of his teachers.  It was really cute!  We're really happy with how things are going for him so far this year.  

His seizures have been popping up about once a month since July.  He has finally topped out of the medicine that has been really working for over a year.  It's still 'working' but not well anymore.  Since he's at the highest dose our doctor wants to put him on we have to figure out what the next step is.  So we're going to be spending a little time at Children's this week.  He's having an extended EEG.  We just got here this morning and he was NOT happy being hooked up but he's doing ok now.  The doctors are going to take him off some of medication this week to trigger a seizure on the EEG.  They will start by reducing some of it and possibly removing some until he has a seizure.  So far Luke has never had a seizure while hooked up to the EEG.  His doctor wants to see where exactly his seizures are triggering from before she decides what is next.  There's a surgical device called a Vagus Nerve Stimulator (VNS) that is the leading choice right now but she has to see his seizures on the EEG before she decides.  So far he's had ice cream, sour patch kids, chocolate milk and is desperately seeking a popsicle!  I'm trying to make it as painless as possible!!!  

Since he's been doing pretty good since the middle of October we're really nervous about 'rocking the boat' right now.  But we don't have a plan once he breaks through again and getting into the EMU (epilepsy monitoring unit) is pretty difficult.  So here we are...Hopefully we'll get some good answers and be able to step in the right direction.  As usual, we have been blessed with an abundance of help with Ben and with my classroom which we're very grateful for.  We'll be hunkered down for the next couple of days enjoying some time together!!  

Working on homework!!!

Tuesday, June 23, 2015

Summer 2015!!!

The end of the school year has come and gone...the end of preschool.  It seems like such a short time ago I was anxiously awaiting our first big IEP.  Our first big step into the school world.  Now over two years have gone by.  It's been good for him - for all of us. 

Nurse Leah, Ms. Birner, Mrs. Walker
Mrs. Mayer & Luke
Luke's social interaction is rapidly increasing.  It's still not typical but showing steady improvement.  His teacher told me that he increased in all of his social goal areas.  I have seen him talking to and interacting more with other children.  He has been going to kindergarten play dates that are set up by the school.  Mostly he kind of runs around and does his own thing.  But at the last one, he talked to and played with a sweet little boy for a long time and even cried when we left.  He asked about the little boy as soon as he woke up the next day.  It's been really exciting to see him start to even care about playing with other kids. 

When I talked to Luke's current teacher about his progress recently she said she thinks he's ready for kindergarten.  They've worked really hard with him but she said that he's ready for this next step.  I feel like he is...but I'm still so nervous.  But I guess I'm pretty nervous before each big step....every parent is! Luke has grown a lot with his teachers the past two years.  We've also had a lot of hand holding by his nurse, Nurse Leah.  She only works with the early childhood kids so we are moving on to new teachers, new therapists, new nurse....EEEK.  

Exciting stuff...Luke is learning to write his name!!!  He's been doing pretty good with hand over hand assistance but the other day he just picked up a marker and did this independently.  It's so fun to see such great progress! 
All. By. Himself!!!!

His seizures have been pretty under control (as usual...knock on wood, please!).  We had a little hiccup a few months ago when a few came completely out of the blue.   Otherwise it's been pretty under control.  We've gone over a year since his last big status seizure.  I hope we can make it a LOT longer than that....maybe forever!  That's not too much to ask, right!  We are continuing to work with his epilepsy doctor to decrease one of his medications and get him down to two and hopefully eventually to one.  As we decrease this medicine we can see him changing - becoming chattier and sillier and more outgoing.  I'm really hoping that we can safely have him down to two by the time he goes into kindergarten. 

First hour into an almost 3 hour
neurologist appointment with
both boys...oy!  
I try not to worry about it too much. One of us still sleeps with him every night and at this point the plan is to continue that until he can tell us he is having/has had a seizure...So maybe forever??? Ha!  I hope not!  When he had some unprompted ones in March, he was able to tell us he felt wobbly which I thought was progress.  It's really, really hard to make the call to STOP sleeping with him, though, since we're always afraid of missing something on the monitor.  We've ordered a device called the Embrace which is supposed to be able to alert us to his seizures but there has been a delay in distribution. 

Reading stories together.
This summer we're settling down...We're not sending him to summer school.  We're decreasing therapy (decreasing, not stopping!).  I don't know if it's the right choice but I feel like the whole family could use a little break from everything.  I'm hoping to do lots of play dates with friends that I never get to see during the school year.  I think that's the best therapy for all of us! 

Monday, March 16, 2015

The Big Five!

Happy St. Patrick’s Day and Happy Birthday, Luke!!  Five years old!  Luke is really excited about his birthday this year.  He has been doing really great overall (knock on wood!).  He hasn’t had a visible seizure since July.  We’ve even started weaning down two of his medicines.  As we’ve been coming down on them, his whole personality is changing.  He is becoming far more outgoing.  He has been walking up to complete strangers and talking to them.  I even got lectured by a man in Wal Mart after Luke started chatting with him…if he only knew how huge it was for Luke to talk to him and use a volume that the man even heard him!  It makes me a little nervous as we decrease medicine but also very excited.  His epilepsy doctor would like to get him down to two and hopefully eventually to one! 
Luke's new bike!

We’ve been struggling with potty training for quite a while now.  Luke is able to stay dry for really long periods of time but he does not tell us when he needs to use the restroom.  Unless someone remembers to ask him on a regular basis if he has to go to the restroom (and usually force him to go), then he’ll eventually wet himself.  On the weekends and when he’s with his Grandma Beth, he’s in underwear 100% of the time with little to no accidents.  Soooo since he is turning the big  ‘Oh-5’ tomorrow, we’re going to go ahead and start sending him to school in underwear.  He’s on spring break right now so he’ll be at our daycare this week.  At his preschool, he’s been started on a potty chart.  For some reason he will not use the restroom there. If I take him to school, he will, but he will not use the restroom for his teachers. He stays dry the entire time he is there so I am not sure what is going on…little mystery man! I don’t know why he’s not telling people when he has to go when he is clearly able to stay dry for long periods. 

Luke is officially registered for kindergarten!  We had his formal IEP/transition meeting several weeks ago.  I was so nervous about it but I feel like it went ok.  Luke has really been struggling with fine motor skills for a while now.  We were really hoping to get his occupational therapy minutes increased in the school setting. Right now, we are able to take him for 120 extra minutes a week to private occupational therapy.  I don’t know if he’ll be able to tolerate that next year since he’ll be in school full days.  We were not able to get his school OT minutes increased which is really disappointing.  They’ve assured us that they have several plans in place to help him in this area.  He will also have someone with him at all times to make sure he is where he is supposed to be and safe.  We were also worried because he still doesn’t always recognize environmental dangers such as stairs and uneven surfaces.  And of course we are concerned about the possibility of his seizures vamping up.  They’re so hard to notice!  It will be nice to make sure there is someone with him at all times that is able to administer his seizure medication if needed – hopefully not!  He’ll have a lot of therapy minutes but also quite a bit of time in the regular kindergarten setting.  I don’t know what the best fit is for Luke but we really want him to try.  I feel like there is a good plan in place and it’s a great place to start. 
We love bike riding - we finally found an option for Luke to ride the tag along bike.

Since before Ben was born, our family has worked with Parkway’s Parents as Teachers program.  Our parent educator, Lori, came out to visit with Dan and me while I was pregnant with Ben to talk about early development. When we told her about Luke’s brain, she immediately jumped in to help.  She has been an active member of team Luke from the beginning.  She has found resources and websites and just offered her personal support through the last five years.  She recently has gone on to another job within Parkway and we’re really happy with her.  She was still working with Luke on a regular basis due to his special needs.  She would not have been working with him past five so we were fortunate to have her up until the end!  Here is a photo of Luke and Lori at her last visit.  We miss her already, as we miss so many of the others who have been there for us and helped make Luke as successful as he is. 
In other hopefully exciting news, we have recently learned about a watch called an Embrace.  This watch is designed to detect seizures even when the seizure is not primarily movement.  It works through some kind of smart sensors that detect physiological signals and will be able to send an alert to a smartphone or ipad.  Since Luke’s seizures got so bad last winter/spring, someone has slept with Luke every night.  We do not know at what point we would be comfortable taking a deep breath, hoping for the best and letting him sleep on his own. This watch is not going to be our savior.  We know that. But at the very least it will hopefully give us a little peace of mind.  Quite honestly, I hope we don’t know for a very long time (if ever!) if it really works well.  I hope and pray Luke never tests it but if he does, I sure hope it works!  Keep your fingers crossed!  It ships in July!! 

Overall our sweet leprechaun has been doing great.  So great!  He’s reading a ton of words.  He’s getting faster and stronger.  He’s talking a ton and is obsessed with knock knock jokes. His teachers at his daycare, Lakeside, have been working hard to teach him a variety of jokes! 

I feel like five is a huge milestone.  I reread our first post and am overwhelmed by the emotions I was feeling then…continue to feel now.  As I browsed through our journey I am truly constantly reminded how much support and love we have felt over the past five years.  As time goes on, we continue to be blessed with fabulous family, friends, teachers, and therapists.  We are so lucky to have you all in our lives.  Happy St. Patrick’s day and of course, Happy, happy birthday to our sweet Lucky Luke (click here to see a little hodgepodge o' silliness!)!