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