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.  

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!!!

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! 

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!)!

MPPH Research

It's been so long since I've posted, I forgot how to make a new post!!  Whew, it's all coming back to me now!

Luke is now a  few months away from 5 - FIVE!  I can't believe it.  His seizures (dare I say it as we head into winter!!!???) have been mostly under control the last 5 months.  He had some questionable behaviors this fall and we increased his medicine and that seemed to fix things. 

He is blossoming right now as he is becoming more interactive with other peers.  He's always been fairly social with adults but interacting with his peers has been a challenge and frankly he seemed uninterested and sometimes afraid of his peers.  Ben has a friend whose little brother is just a little older than Luke and he's really sweet and persistent.  His persistence has paid off and now Luke looks forward to seeing him and plays alongside him.  It's really sweet to see. 

He continues to amaze us with his spelling powers!  He's reading simple stories and often spells as he is talking to us.  He'll say, "Are we going to g-r-a-n-d-m-a-s?" You have to listen closely to figure out what he is talking about sometimes. 

We have his kindergarten (!!!!!!!) transition meeting coming up sometime in the spring.  I'm nervous and excited at the same time.  I'm not sure what kindergarten should and will look like for him.  I want him to feel comfortable and successful and continue to learn a lot.  Writing continues to be a major issue for him and I know that will be difficult as he moves forward.  We started private OT therapy a little over a month ago.  I'm not sure if it's the new therapy but we've seen a lot of improvement since he started.  He's starting to be interested in writing and coloring.  We increased to twice a week and thanks to my in-laws taking him once a week, it's doable for our family. 

About two weeks ago, I had the opportunity to talk to Dr. Ghayda Mirzaa.  She is one of the doctors who is researching MPPH in Seattle.  Due to Luke's brain size and malformation his epilepsy is a little tricky.  This past winter when we were really struggling to control his seizures, I reached out to her to find out if they'd identified any children with the same gene mutation who was having a similar epilepsy experience.  The thought was - from us and Luke's doctors - if they have other kids who have the same gene mutation and  brain malformation then maybe they'd have similar epilepsy.  And maybe someone, somewhere was having better luck controlling it than we are.  The answer was no...no they don't have many more kids identified with the same mutation, no they're not sure about the epilepsy. 

Currently there are 4 children involved in their MPPH study who have the PIK3R2 mosaic mutation.  I know one of the families and have talked about him on here before.  His seizures have largely followed the same pattern as Luke's and as he is switching up medicines, his mom checks in with us to see what we've tried next, what has worked, what our doctor's plans are.  He's developing very similarly to Luke, too.  His mom and I talk often and come up with our own scientific theories:)! 

Dr. Mirzaa contacted me to check up on Luke but also to let me know that they are embarking on an in depth research study on epilepsy and MPPH.  She is teaming with the director of pediatric epilepsy at Washington University to look at MRI's, epilepsy videos, EEG reports and neurological notes to hopefully make solid connections about epilepsy and MPPH.  What that could mean for Luke would be better ideas on how to control his epilepsy.  The gene mutation that he has is the 'golden' gene of MPPH.  So far, from what they know, most of the kids with that gene mutation and epilepsy, have seizures that are well controlled.  There are two other gene mutations associated with MPPH and the seizure control with those mutations is trickier.  I'm really excited that her team is making an effort to get a better understanding of MPPH and epilepsy.

At this point, there is a relatively small pool of subjects that the doctors have to work with.  So what I'm asking, if you're reading this and your child has been diagnosed with MPPH or you suspect your child has MPPH, contact Dr. Mirzaa.  Get involved in the research.  It won't cost you anything.  They've even found the gene in some children who do not officially have megalencephaly.   If you're child has a larger head and PMG, contact the office, tell them a little about your child and see if your child 'fits'. 

The realistic part of me thinks that while all of this research is exciting, I feel like being involved will help others more than it will help us at this point in time.  It may help someone whose brand new baby has just been diagnosed with all of these huge words that the parents can't pronounce or remember how to spell.  Maybe they'll be told they have the same mutation as Luke and the doctors will be able to say that they have several children identified with this and tell these parents how the kids are doing and maybe, just maybe, they'll be a little less scared than we were (still are a lot...). 

So, if you are reading this or have read about Luke and you think that maybe your child's facial features look a little like this darling boy or your child has PMG and his/her head size is large or a touch too large and you're looking for answers...click here. It will take you straight to the megalencephaly lab where you can contact Dr. Mirzaa or her awesome assistant Carissa Adams. 

We're hoping for an uneventful holiday season.  Luke is doing so much better than last year at this time so I'm really hopeful.  Our family thanks you for following Luke's story and for all your prayers and love.   Wishing all of you a happy and healthy holiday with all of your loved ones. 

Christmas in June and July!

Sooo much great stuff to update and so little time!! 

*The Epilepsy Walk:  Our team raised over $6,000 for the Epilepsy Foundation of Missouri and Kansas. I cannot begin to tell you what that means to us.  Luke's seizures have gotten better since we started the new medicine.  But he has had some breakthrough seizures, although, not horrible ones.  So we've increased it twice now and are hoping that is it for awhile. But I don't want to dwell on that except to say thank you for providing money and awareness that will hopefully be beneficial to him sooner than later!  We also had close to (maybe more than...) 70 people come to walk with our families and SOOOO many more than that offering words of support and encouragement.  It was a truly special day and I can't find the appropriate words to express our appreciation for all everyone did.  So thank you. 

*New Jersey:  The boys and I had the opportunity to go and visit with a special PMG friend, Michelle, and her family.  She started out as a PMG friend and quickly developed into just a friend - someone who I would like to believe I would have somehow met even if PMG wasn't in our lives.  I've been fortunate to develop several special friendships since Luke's diagnosis and that has been a silver lining in the situation.  Anyway, we flew out to New Jersey to spend the week together.  It was such a great time.  We were treated like royalty by both her family and her husband's family.  They all follow Luke's story and offer words of support and prayers in good and bad times.  It was nice to put faces with all the names and have some quality time together - although I'm pretty sure we STILL never finished an entire conversation! 

*Stroller:  I've been researching special needs strollers for awhile now.  Luke walks well but he tires easily and when he's struggling with seizure control he gets especially clumsy and even more tired.  He's fallen several times and the spot on his head that he hits now has a permanent knot.  Upon researching special needs strollers, we discovered that they're crazy expensive!  Imagine my surprise and joy when insurance assured me that with a doctor's note it would not be a problem to cover the stroller. I know, I know...silly me!!  Well, first of all, it takes for-ev-er!  UGH!  Second of all, after waiting forever, they denied it because we already have a wheelchair and a stroller would be a convenience item.  (For those of you who know us, you might be scratching your heads right now, wondering...wheelchair???)  We DON'T have a wheelchair!  I called, thinking it's an easy fix.  I know, I know...silly me.  Again!  They told me we'd have to go through a whole appeal process which would again take for-ev-er!  AAAGH!  I might've lost my cool a bit here....within minutes of hanging up with them I get a text from my friend, Andrea (side note about her below), saying she might have a surprise for me.  Long story but she happened to check a special needs website and find a woman who was giving away the exact stroller we wanted.  GIVING AWAY.  Not selling - GIVING AWAY COMPLETELY FREE!!  Andrea immediately texted her and was the first one and GOT LUKE THE STROLLER!!!  We picked it up today and it's wonderful.  He has so much more room and will be able to use it for a long time.  I tried to give her - Rebecca - something, anything for the stroller and she refused.  She is an awesome person with two boys who both have Dandy Walker Syndrome.  I don't know how to thank her appropriately so I'll be looking for a way to pay it forward in her honor.

Rebecca, one of our own personal Santa Clause's!  We LOVE YOU!

Speaking of Andrea - her daughter, Willow, who has the same gene mutation as Luke and PMG, is in the hospital right now.  So while Andrea was (is) in the hospital taking care of sweet Willow, she was also looking out for Luke and thought of him immediately when she saw the stroller available.  We are so blessed to have friends like her in our lives.  Please say some extra prayers for sweet Willow.

Willow's first sweet smile in DAYS! 

Dan, Luke and I met with his new epileptologist last week.  Dr. Weisenberg is amazing. She's very direct which we loved.  She has several plans in the back of her mind if the Onfi doesn't do the trick.  Since he's having breakthroughs we're increasing the Onfi again and we're actually going to start decreasing one of his other meds.  I know that sounds strange but the fact is that he's on too high of a dose of his other two meds anyway and sometimes *that* could cause seizures.  He's also becoming increasingly lethargic and clumsy which is worrisome. So we're taking a deep breath, saying a prayer and giving it a try!  Wish us luck. 

Overall as you can read...we have way more good than bad.  I'm always thankful for that! Hope everyone is enjoying their summer!  We sure are!  Love to you all! 

4th time's a charm?

Snoozing in the hospital waiting for a discharge!  How stinking cute
is he??

We are all really happy to be home under one roof again.  Luke had a nice day and is doing pretty well.  He's still unsteady but we expect that. 

The great news is that we were able to meet today with Luke's new doctor,  Dr. Weisenberg. She is very direct and a great listener.  We were concerned about increasing one of Luke's medications because the current medications are clearly not working.  She agreed and we are immediately going back down to our regular dose.  We started his new drug,  Onfi, tonight.  The scary thing about it (well some of the scary things!) is that some of the side effects were things we typically watch for as pre signs of seizures - clumsiness, extreme drowsiness, drooling...so that makes it even trickier to determine if he is having seizures or about to start having seizures. 
One of the reasons that provoked my hate post yesterday was the way his seizure presented Saturday night.  My mom was watching the boys while Dan and I ran down the street to grab a drink.  I told Grandma 'Ancy (both boys drop the 'n' in Nancy!) that she shouldn't talk to them because they'll both talk as long as she'll let them.  Luckily in true Grandma fashion, she ignored me and was having a good old time talking to the boys.  Ben - who was NOT tired - fell asleep pretty quickly.  Luke was pretty chatty, though, and she and Luke were having a fun little conversation.  As she was talking, she realized he had stopped responding.  She looked at him and noticed his eyes were deviated and he wasn't returning conversation. She immediately called us and we were home within 5 minutes.  As soon as we saw him, we knew he was indeed having a seizure.  We were able to administer the emergency drug while calling 911. 
On a normal night, it would have been me in bed with the boys.  I sleep with Luke every night while Dan watches the monitor.  When I put them in bed, I usually read a book on my phone or Kindle and remind them to be quiet so that they will fall asleep.  If it would have been me in there - I have no idea how long it would have/could have taken for me to notice he was having a seizure!  He never threw up after that seizure which is how we find out a lot of times he is having a seizure.  As he is seizing, Luke's blood oxygen starts to deplete.  It usually takes a little while but either the seizure or his head position begins to compromise his blood oxygen.  We have always counted on him throwing up during his nighttime seizures to alert us to a problem.  So we were even more anxious to bring him home because nighttime is a scary time in our household.
He was hooked up to the pulse ox machine during the night because he went into a second round of seizures and his O2 levels were dropping.  I mentioned to the nurse that I wished we could have something like that at home and she said a lot of epilepsy families use them.  I've looked for nighttime devices before but they are mostly for seizures with movement involved - Luke has ZERO movement.  Zero.  Anyway - long, long story with discussion back and forth - but Dr. Weisenberg sees how something like that could bring us some peace of mind and is going to have her nurse start looking into how we could get one to use while he's sleeping.  Truthfully, if we got one it would only really detect a seizure if he's been in it for awhile because it usually takes awhile for his O2 levels to drop.  But at least it would be able to tell us that his breathing was reaching dangerous levels.  It's better than what we have now - which is nothing! 
So all in an all...Dr. Weisenberg is a hit.  AND even better - we're still seeing Dr. Smyser in 6 months to check in, too.  Best of both worlds! Yay! 
Fingers crossed that the saying '3rd time's a charm' is inaccurate and they really meant '4th time's a charm!'  Go Onfi!! 

Attempted selfie with my other little monkey who I was excited
to see....this is why I don't take selfies.  Well, one of the reasons. 
I took 3...this was the best one! 

 

Alright seizures.  Can you please go away for good and leave my kid alone? Grrrrr!

We're back at Children's and hopefully we'll go home tomorrow.  We are increasing a medicine that's not working anyway and hopefully adding a new one tomorrow that will take our little 4 year old,  43 pound,  43 inch kiddo up to 3 anti-epileptic drugs. Awesome.  

I hate seizures.  I hate the medicines that aren't working.  I hate watching Luke cry as they poke him with needles and inflict pain to determine if he's having a seizure.  I hate watching him stumble and slur his words looking like he should look on his 21st birthday,  not at 4. I hate listening to the baby crying down the hall at the beginning of this journey.  I hate feeling like I'm always, always waiting for the worst to happen and it keeps happening.  I hate that while I'm waiting,  I always feel like a crazy person.  I hate being a big fat whiner when there are other precious kids who have it so much worse.  I hate being away from Ben...again.  I hate that I'm still finding my voice and my strength to stand up for what I think is happening to or what is necessary for Luke. I hate missing the second to last day of school with my first graders and I hate that I'm not going to be with Luke on Tuesday so I can be with my first graders on their last day. I hate not knowing how he is feeling or if he is in pain.  I hate that I feel so much hate.  Whew. Thanks for letting me get that off my chest. 

I love,  though,  so much. I love our families and friends who are always willing to listen and pitch in. I love new friends who are helping to make sure Ben feels special.  I love my little boy who called the tech a booty butt (not deserved but I enjoyed the spunk!) and blew raspberries at her. I love the nurses and doctors who are trying their darnedest to help our family.  I love that we found out that we might be able to get a hospital pulse ox monitor because his oxygen levels drop during his seizures which might give us a little peace of mind at night.  I love my friend who is yet again going to make sure my classroom is up and running for the substitute tomorrow.  I love the texts and emails and support that always makes me feel like we're not in this alone. I love the friends I have made because of Luke's diagnosis.  I love my husband who is with me every step of the way. I love my boys who are going through life calling each other names and laughing and making arm pit farts. I love those things and so much more.  

Since Luke has been so unsteady lately we've been
holding his hand on the stairs.  Ben now insists that it is HIS
job to get Luke down safely. 

Hopefully we'll go home tomorrow. Hopefully we'll add a new medicine so I'll have renewed hope that this ugly stage is behind us. We'll meet our eptologist officially in a few weeks.  Let's all hope that the past seven months can be the past and our future doesn't keep going this way. 

Thanks for listening.  Love from SLCH..... again.  

Gratitude!

Luke has been doing really well.  He is on his full dosage of his new medicine.  His new medication was increased quite a bit and he's still on full dosage of his old medicine.    He's a little grumpy, drooling a little, and waking up some at night but otherwise OK.  He seems back to pretty much normal which is nice.  It's a little stressful since we thought he was doing really well when he had the last seizure but we have to find a way to take a deep breath and enjoy the peaceful time we have right now.  We follow up with our neurologist in early May which I look forward to.  It's always nice to sit and chat with him in person. Hopefully there's nothing new to report to him!



Chowing on cupcakes!

I always mean to write when Luke is doing well.  However, I seem to share when we're struggling mostly so I wanted to do an update while he's doing well!  He is almost finished with his first full year in preschool through the school district.  With his medical difficulties it certainly has been a rough year.  Our daycare, which also operates as a preschool, has been incredible.  Without them we would not have been able to send him to the school district school.  The biggest reasons I wanted to send Luke to the school district was to have his therapies and have smaller adult to child ratios to really encourage the social interactions.  Our daycare volunteered to take Luke back and forth because Dan and I couldn't do it.  Socially he is making huge strides.  I still wouldn't say he's 'typical' but he is starting to make progress.  He talks constantly about a little girl named Reham.  He keeps asking me to call her mom so they can have a play date and a sleepover!  He's totally skipping just playing and going straight to sleepovers! 

Today I picked him up from daycare I was told he took off his pants outside!  And he's been telling everyone that there is a 'hotdog in his booty butt'!  What!?  He's turning into such a nut. 

It's really nice to have places where we feel comfortable taking him during the last few stressful months.  I know that both of his schools are well equipped to handle a seizure if it happens to occur.  We are fortunate because the only babysitters we use outside of family are two women who have known Ben and Luke for awhile because they are teachers at our daycare.  They know him really well and I feel comfortable knowing they'd recognize behaviors that were out of the ordinary.  He has quite a team of people looking out for him!

Speaking of teams, I also wanted to update about the Epilepsy Walk.  We are SO fortunate because due to the love our family, friends and even strangers, we have already surpassed our goal.  The walk isn't until the middle of June!  I am overwhelmed and feel so blessed.  If you are planning on walking with us, don't forget to join our team before May 26th so you can get a Seize the Day t-shirt.  I haven't been able to personally thank everyone who has shared/donated/joined yet but I will.  In the meantime, please know how much it means to us.  I have big hopes of funding going to things like better medicines to control epilepsy and seizure detection devices that will detect the kind of seizures Luke has.  Together I feel like we're doing something really important for Luke and many others and that is an amazing feeling.  So thank you. 

Every Little Bit!

We came home yesterday - Friday.  We decided to bring Luke home because we thought he could recover more quickly at home than in the hospital.  He's really tired, irritable and unstable but he's home and doesn't seem to be having any seizures.

I wanted to share some things about this latest episode and what it means for Luke and his epilepsy.  Luke's seizures are called partial complex seizures.  Typically - in most individuals that have them - these seizures last 1-2 minutes.  Luke still has some partial complex that last short amounts of time.  In his past history he would have some small ones, we would increase medication and they would go away.  Then last winter happened...and he had his first status seizure, the 20+ minute seizure. 

At that point we were still on Keppra to control his seizures. It became clear that Keppra wasn't going to work anymore so we switched to Lamictal. Keppra doesn't have any huge major side effects besides major anger issues in some kids.  When the nurse brought up Lamictal the first thing she talked about was the possibility of a severe deadly rash that can occur when you take Lamictal.  When researching it, it comes up as the first information about the drug on most websites.  But we took a deep breath and decided to go ahead because it was what our neurologist felt was best at the time and from our research we did, too.  Well, luckily it didn't cause a deadly rash in our guy but any time he even got a fever we freaked out. 

This past January it became clear that Lamictal wasn't going to cut it anymore.  We were increasing and increasing and his seizures were still popping through.  With another status seizure now in Luke's history, we decided to go ahead and add another medication - Zonegran.  It also comes with a long list of precautions - namely the possibly of kidney stones or decreased kidney function among other bad stuff...but we have to try to stop his seizures.  So we began with a small dose at night because that's the time we really run into seizure trouble. 

We also have two medications at home that are 'rescue medications'.  They are supposed to stop the seizure or stall it long enough to either NOT need medical help or for us to be able to get to the doctor.  When Luke has one or two small ones, the pill we have does seem to work.  But this last seizure - it came fast and strong.  He would only come out of it for seconds.  I gave both rescue meds and it did nothing to pull him out of his seizure.  They were also completely ineffective for the January seizure. 

 A lot of seizure medications also impair cognitive function which scare the crap out of me.  We've avoided them so far but we're starting to fly through medications.  Luke is amazing everyone with how well he is doing given his extensive brain malformation.  I would hate to have to do anything to change his level of success...although continued lengthy seizures could also have the same outcome. 

As I consulted Dr. Google I found out that it is rare for individuals with partial complex seizures to go repeatedly into status seizures.  I also either heard or read that once someone tries 4 different seizure medications the likelihood of being able to control your seizures via medicine drops drastically.  Since Dr. Google isn't always the best doctor to listen to, I was able to ask our doctor while we were in the hospital. 

Dr. Smyser is truly our hero.  He is not a wait and see kind of guy.  He answers our questions fully and is respectful and listens to us.  He is aggressive with Luke's treatment and developmentally I KNOW we owe soooo much to him because he made sure Luke was getting therapy from the moment he was born.  He very patiently and sweetly addressed my Dr. Google questions.

Yes, it's rare for individuals with partial complex seizures to go into status.  However given Luke's extensive brain malformation (PMG) it changes Luke's epilepsy.  A lot of individuals with epilepsy have no reason for their epilepsy - we do.  So that makes Luke's case and treatment tougher.  Also since he has an extremely rare gene mutation (MPPH syndrome) there just isn't enough information or research yet to say why Luke's seizures are amping up at the rate they are and being so resistant to several drugs. 

As far as the medication question - also true.  The more medications someone tries - the trickier it gets to control the seizures.  But he also said that there are more and more medications being developed and we still have some to try that could help.

Right now since we had the whopper Thursday night out of the blue, he wants to be somewhat aggressive with our medicine.  We are going to quickly increase his Zonegran to a much stronger dosage over the next three weeks as long as Luke is tolerating the increase. If that doesn't work, Dr. Smyser is going to refer us to a neurologist that specializes in epilepsy which means we probably won't be seeing him anymore.  He knows I am STRONGLY opposed to not seeing him anymore so he promised to work with us and that we might be able to see two neurologists:)! 

One of our biggest fears is the nighttime.  We have an awesome video monitor that we can watch.  Thursday night I was watching it and I saw Luke opening and closing his eyes.  He wasn't moving. He wasn't fussing. I thought it was weird as I watched.  Then he flopped over and I thought he was going back to sleep.  Then I heard him cough and I knew!  I raced in and grabbed him as he was about to vomit.  It was dumb luck that I happened to see him opening and closing his eyes.  And that was the beginning of a seizure that lasted about an hour and was followed by two more seizures lasting 7 and 5 minutes each - two more seizures that came AFTER he had 4 doses of 'rescue meds'.  Then he was given a drug called Fosphenytoin to finally stop it altogether.  He also required this drug to stop his January seizure.  If he ever has a seizure that he doesn't vomit after....well, that'd be bad. 

All of those medications finally stopped our guys seizure.  But the meds and the awful seizures left him drugged, not feeling well, irritable, unable to walk, slurring his speech, and I'm sure just plain scared.  Today (Saturday) he is walking but he can only walk a few steps without falling.  He is still slurring his speech and extremely irritable. 

I try to keep our blog upbeat.  I try not to overshare the stuff that you probably don't need to or necessarily want to know.  We ARE so happy with Luke's progress.  We ARE proud of how hard he works, how hard we work and how hard our family & friends work to ensure his success.  But these stupid seizures.  Argh.  I hate them. 

So I'm totally going to play dirty here.  We've had such an overwhelming response to our walk page so far.  We are already 32% of the way to our goal in just a few days!!  We've had such a generous response from family, friends and even friends of friends.  We can't tell you what that means to us.  The money isn't for us.  It's for all of the kids and adults affected by epilepsy.  They need better monitors that could help identify when they're having seizures.  They need medications that don't come with red level warnings of possible death side effects.  They need support.  We need support so we can do our best to keep Luke healthy, developing and happy.

There are a lot of great causes out there that touch our hearts and I know Dan and I try to help as many as we can.  Sometimes it might only be $5 or $10.  Every single bit helps.  Every dollar, every share will help with epilepsy research and support.  And we appreciate every single bit that we can get to do our part to help the Epilepsy Foundation of Missouri and Kansas. 

So if you can help, here is the link to our walk page:  Stephen & Luke's Seizure Stoppers!  I've had a few people ask if they should join our team if they were planning on walking - please, please do!  We'd love it!  I know Jaime's family, my family and many, many other families are very thankful for whatever you can do to help. 

The prayers and love the last couple of days, weeks, months & years has definitely been felt by us.  Thank you. 

Our sweet boy sleeping off his seizure/medication hangover
with his keys in hand.  He is *obsessed* with keys.  We usually
 don't let him have them in bed but since I'm sitting with him
 and he's had such a rough few days...we made an exception. 

We're back.....

Luke had a seizure tonight that lasted over an hour. We are at Children's again.  He had 5 doses of rescue meds to stop his seizures.  He's resting comfortably and we're waiting on a bed in the PICU.  We're hoping that we'll be able to come home tomorrow because once they get it stopped,  there is really nothing they can do for our sweet boy. 

He had a great day today so a big one like this was unexpected.  He rode his horse tonight and was laughing and talking happily. 

Lots of prayers would be appreciated.  

♡

Stephen & Luke's Seizure Stoppers!!

Stephen & Luke's Seizure Stoppers!! 
Seize the Day, June 21, 2014

If you follow our blog, you know the last few months have been really tough seizure-wise.  Luke's seizures have gotten better but honestly we're not convinced they're behind us right now.  He's still having issues with stuttering and drooling and clumsiness which seemed to be cropping up before the seizure winter from hell...

His new medication seems to be helping which we are thankful for.  We also have a lot of room to increase his dosage if his recent behaviors are indeed indicating he's starting to have small seizures again.  Now that he's had the longer status seizures unfortunately he's just more likely to trip into those. 

We are lucky because Luke's medications work for lengthy periods of time.  But the medications aren't a cure.  They're a Band-Aid.  That's all.  For some kiddos the Band-Aid sticks for a long time...for some kids the Band-Aid never sticks.  Ever.  When no medication will work and seizures are day in day out and unstoppable...that's called intractable seizures. 

Our sweet friend, Stephen, has intractable seizures.  He's had them since he was a year old.  Dan and I have been friends with his parents, Eric and Jaime, since college.  Dan and I knew each other in college but we weren't friends.  We were reintroduced at Stephen's baby shower - Dan and I were the only two single people there so according to Jaime & another friend, Dori, we had to be perfect for each other.  Turns out they were right!  So Stephen holds a really special place in our heart! 

We don't know how long Luke's medications are going to work.  We don't know if there is ever going to be a medicine that is going to stop Stephen's seizures.  We do know that we need your help. 

Jaime and I decided to team up this year for the Seize the Day epilepsy walk.  The money raised for the epilepsy walk will benefit the Epilepsy Foundation of Missouri and Kansas.  It's early, friends.  7:30 in the morning!  But it was fun last year and you can go home and sleep after!  If you're not in the area but you'd still like to sponsor Stephen and Luke, you can make your tax deductible donation to our team here. Please join us in Kirkwood for a fun morning supporting epilepsy and those who are affected by it.  Please feel free to share our page with your friends! 

Thank you for all of your support and love!! 

Seize the Day 2013