NO SURGERY!!!!

Luke's MRI was this morning.  Everything went well.  His ventricles have not enlarged very much since his last MRI so that is great news.  The fluid around his brain has also slightly decreased - which is great news. 

When we were on our way to the hospital this morning we were resigned to accept whatever happened.  I said that my first choice would be that they would say that his ventricles haven't really enlarged, we'll keep an eye on it..no worries.  And they essentially did. 

I also was worried that they'd find something new or different wrong.  I didn't want one more thing to worry about.  Dr. Limbrick (super awesome surgeon) took us to show us the MRI scans.  As he was showing us, I noticed that it said that he has damage to his perisylvian area.  Some types of PMG have that word in it.  I've read about kids with damage to that area and thought that we didn't have it.  Well, I thought wrong.  His is damaged and has been all along.  So there's not something 'new' wrong, just a little more damage than we knew about.  It is an area that has a lot to do with language development (from what I understand) and we already knew there was a problem in that area. 

When we first found out about Luke's diagnosis, I still had a small, secret hope that they'd do his MRI after he was born and come back to us apologizing profusely for messing up because they were wrong.  I was on the fence about starting this blog because I was hopeful that I'd have to quickly shut it down with a 'Whoops!  Sorry, the doctors were wrong...didn't mean to worry everybody!'  Then I'd think that, fine, if he had to have this stupid PMG then maybe the damage wouldn't be as extensive...maybe it was only on a small portion of his brain...not almost the whole thing.  But I guess it doesn't matter.  It seems like no two kids with a PMG diagnosis  - even if it's the same - are doing the same thing or progressing the same way.  So another little piece of puzzle isn't really life altering here.  I just hope it's the last piece of the puzzle and there are no more unknowns out there.  Maybe these are the stages of accepting a PMG diagnosis?? 

So our good stuff - it's what we like to focus on!!
1.  NO MORE SEIZURES!!  (Dan WILL be knocking on wood when he reads this.  Wouldn't hurt if you did, too, please!)
2.  In the last week or so, Luke has REALLY seemed back to his old 'self'.  Really back.  He's pretty much always happy (except around doctors...he doesn't like anybody in scrubs!).  He's eating great.  He's making lots of progress! 
3.  We have AWESOME doctors and care from Children's.  I've 'met' some people already through this blog and other support groups. I've learned that we are so, so lucky with the exemplary care Luke has received and will continue to receive.
4.  You guys.  As usual.  You're the good stuff.  Thanks for all you do to support us.  We have had a relatively easy ride so far - busy, but things could be much worse.  It's nice to have you all here for us for whatever life throws at us.
5. And of course...this has nothing to do with Luke...but the Cards in the World Series.  Obviously, that's the good stuff!  Now if only I could pretend like I was going to stay awake throughout the game tonight....Go Cards!!

Hanging in!!

Luke had a really good week!  No more seizures!  He seems to be adjusting to his medicine well.  WHEW!  Every day that passes without a seizure helps us to breathe a little easier.  We so appreciate all the sweet words and phone calls this week.  It helps us so much to know that people are thinking about him and pulling for all of us. 

We met with the neurosurgeon this week and I just wanted to give you a little update on that.  First of all, I didn't think there would be a need for an update.  I thought (as my sister in law says) we were just going in for a 'meet and greet.'  Not so much.  There is no huge alarm right now but it was disappointing.  I thought we knew all that was wrong with Luke's  brain.  And we might.  But we might not.  Basically in a nutshell (since I keep writing these short novels!!!) the surgeon is concerned enough about the enlarging ventricles to order another MRI sooner than later.  He thinks there might be another problem in Luke's brain where there may be a blockage not allowing the spinal fluid to pass through therefor causing the enlarging ventricles.  Both problems are correctable...surgically.  BUT no one is saying that we are anywhere near that now - or (HOPEFULLY) ever. I think that I have been telling myself that surgery wasn't really ever a possibility so it was a little bit of an eye opener to me.  Thankfully Dan went into the meeting more realistically so a level of calm was maintained!

The great news is that the day we have the MRI we will also meet with the surgeon and should have our answers.  He said at this point, best case scenario is we go in for the MRI and not much has changed and we come back for another in 6 months.  So that is what we are hoping for.  After having a little time to process, we're glad that he's getting this MRI sooner than later because then we know that he is being monitored closely and if the ventricles are enlarging enough to become a problem then it will be caught quickly.  The problem is that the signs that the enlarging ventricles are a problem are the SAME as the side effects of the medicine and the aftershocks of seizures!!  So it's really a blessing for our peace of mind to get this MRI quickly. 

The MRI is tentatively set for October 28th so again we wait...I should have called this blog 'Waiting'!!!  :)  Honestly, right now our biggest concern is making sure his seizures are under control and at this moment in time they seem to be. So we are very happy! 

This fall has been a little bit more difficult than we anticipated.  We are very lucky to have understanding employers, caring and concerned friends and a loving family to get us through.  We continue to celebrate the fact that Luke is doing far better than we ever expected.  We'll update more after the MRI!  Fingers crossed for another 6 month waiting game!!!!!!

I started this way earlier today.  Since then I found out a good friend's son had a major seizure today.  There are major and minor ones.  To every parent, seizures are major ones.  But I need to remind myself often and be thankful that we have only really had minor ones so far and hope that it continues that way.  To all the families out there who are experiencing any kind of seizure or worrying about the probability of a seizure...our hearts go out to you. Thinking of you J & hoping you are all resting well tonight...

So far, NO good....

One of the scariest things about this whole PMG diagnosis is the seizures.  We were hoping (duh!) that we'd escape that aspect of PMG.  No such luck.  Now, even with medicine, they are unfortunately increasing.  Luke had two seizures over the weekend.  I say that with sad confidence even though we didn't witness either one. 

When we first brought him home, I was terrified.  Babies are so jerky and weird!!  EVERYTHING looked like a seizure to me.  There were a few dark weeks when Luke was going through a particularly jerky period where I had my camera out every two seconds trying to capture his 'seizure' on video.  I've said this in a previous post - we were told that we'd just know.  And there is so much truth to that.

After his first seizure we purchased a video monitor for our peace of mind.  We love it.  It's been super helpful.  Sunday morning I glanced at it after hearing some noises and saw that he was sitting up.  I went in to get him up and noticed that it smelled in his room.  Upon turning on the lights I discovered that he had thrown up.  So this is where I have realized my life has totally changed.  My mind instantly went to, 'Did he have a seizure??'  After his first two seizures he threw up.  So of course that's where I go.  I tell myself to stop being psycho, crazy mom (I tell myself that a lot these days) and that he probably has a stomach ache.  Toddlers get the stomach flu and right now, in our house, WE GET EVERYTHING. 

Dan and I got him cleaned up and watched him carefully throughout the morning.  And the gut instinct kicked in - he was super sleepy, pretty irritable and slightly off balance.  He fell asleep in the car about an hour and a half before his nap and then napped again that afternoon.  Not good.  We decide to play it cool - he's on new meds, we have to give it time, could be a reaction to the medicine....

We know one of us has to sleep in his room.  We also wrote down what happened just in case it started to happen more frequently.  If it happened again we were going to call the neurologist to get his take on the situation.  We are trying to keep track of any unusual behaviors/sleep patterns just in case the medicine isn't agreeing with him.

And then comes Sunday night.  This time we are both awake and I'm not in his room yet.  Video monitor is sitting beside Dan and we see it all occur - well not the seizure because unless you're looking at his sweet little eyes, you can't really tell.  Luke got sick and we flew up to his room.  He wasn't even able to lift his face out of it - saddest and scariest thing I've ever seen.  After we cleaned him up I was holding him and he was really lethargic.  He would look at us after we called his name several times.  He could stand on his own but only for a few seconds before he'd start to fall.  Gut instinct kicks in.  Again.  And for us it confirms both seizures at once.

We called the neuro on call at Children's.  Can I just say how very much I love Children's?  The neuro on call (I can't remember his name - I was a little stressed) was awesome.  He listened to what happened and said this fancy word that I am too tired to look up right now about post seizure behavior - we're going to refer to them as aftershocks.  Eventually we got him back down and I spent the night in his room and Dan spent the night listening to and watching the monitor.  Luke slept well...

Today Dan stayed home with Luke.  It was really hard to leave him but I've missed a ridiculous amount of work this year already and I knew he was being well taken care of.  Luke was pretty sleepy and definitely not himself this morning.  Two naps (on a normal day he only naps once) into the day and he was pretty much his old self.  Whew.

We spoke to our neurologist's office and they are upping his meds.  They said it might take awhile to find the right dosage.  I asked the nurse what we could do to figure out if he was having a seizure at night since he doesn't tend to move around during a seizure or make noises. 

"You're just going to have to watch him carefully."  Hmmm....goodbye sleep. 

And that is what we're doing right now.  We are on high alert and I'm trying to make sure I look at him closely every time he moves. We gave him the new dosage tonight and of course we are hoping that it is the magic fix.  We will see.

We are trying to figure out the right balance of trying to take care of one kid while not forgetting to take care of the other.  Last night while we were trying to clean Luke up, Ben was yelling for us from his room.  We finally let Ben get up and be with us because we wanted to make sure Luke was fully alert before we would let him go back to sleep.  Ben was full of hugs and kisses for all three of us.  He knew things weren't right.  The other night Luke was crying really hard for some reason before bedtime.  I was with Luke and Dan was with Ben.  Ben told Dan, "Daddy my eyes are wet because Lukie is crying."  He is so sweet (and wild, but that has nothing to do with this) and I hope we figure out a way as all of this passes to make sure he's getting his due attention, too. 

And we continue to take it one day at a time.  I hope and pray that the seizures don't hurt his development.  I hate, hate, hate giving him this medicine but know that at this point it is necessary.  It would be a lot easier if he could tell us how it was making him feel.  He does seem to be tolerating it well and doesn't seem to be having any ill effects minus the whole thing where it's not stopping his seizures yet.  Grrr.

Thanks in advance for all your prayers and positive thoughts for Luke and our family.  It means a lot to us.  Fingers crossed for an uneventful night and for the meds to kick in strong!! 

Lots of love.

#2

Just over three months after his first one - Luke's had his second seizure.  It sounds like it was pretty much identical to the first one but perhaps a little bit longer than the first one.  It happened at our daycare, Lakeside, this morning.  The kind of seizure he has had so far doesn't look like anything I've ever seen before.  I searched You Tube before and after Luke was born to make sure I was familiar with different kinds of seizures and I didn't see any like his. 

Anyway they called us before 911 because they weren't 100% sure what was going on.  When I spoke to Karrie (one of the teachers at his daycare),  it sounded exactly like what happened before.  Karrie did say that when she remembered to start timing it, it did go 5 minutes without him really 'coming to'.  Dan and I met the ambulance at Missouri Baptist.  Karrie rode with Luke.

So here is where we are at.  He's totally fine.  He is now taking levetiracetam (generic form of Keppra) to control (*STOP*) his seizures.  The side effects that our neuro mentioned is sleepiness and the big one is a behavior change/agitation among other things.  But it seems to have the least amount of side effects from the ones we have looked at.  Hopefully this will do the trick.  However it made him shudder and he spit it out.  Uh-oh.  This is a mean mom comment - but it was pretty funny!  Today.  Tomorrow when I'm desperately trying to make him swallow it, it's probably not going to be so funny to see the 'shudder/spit'. 

He also now has an epilepsy diagnosis.  Dr. Smyser said that once a person has 2 unprovoked seizures they are considered to have epilepsy.  Really, that changes nothing.   With the Polymicrogyria, we knew that was pretty much a given.  We also have the emergency drug, diastat, that we can give him if he is having a seizure lasting longer than 5 minutes. 

He also has his second ear infection within the past month...WITH TUBES.  Grrrr....but that's a whole other issue. 

Shortly after getting to the ER, he fell asleep for awhile.  When he came to, he was signing that he wanted a drink and saying 'outside' over and over.  It made us feel better to see him perk up so quickly.  He's been fine the rest of the day.  His balance seems slightly off, like last time, but  by this evevning it seemed much better.  He is sleeping right now and I'm so glad we decided on getting the video monitor.  That makes it much easier to put him to bed on a day like today. 

I'm really hoping we have NO new news for awhile.  We meet with the neurosurgeon in October but I'm really thinking it's just a precaution so hopefully there won't be a lot to report. 

We're thankful that our little guy is home and sleeping in his bed!  Take care!

SPEECH!!!

We had our First Steps meeting tonight and it went GREAT!  Luke will start receiving weekly speech services!  Sooo excited.  He will be seen every other week here at home and every other week at daycare.  His other services - PT weekly/OT every other week - will stay the same. Our team was great and they made it very easy...so I was nervous about nothing!!  Whew!

He did decide - as I was trying to make my case for speech services and show them how very delayed he was - to say 'outside' for the first time.  Ever!!   He was standing at the back door trying to open it because Ben was outside with the babysitter and he desperately wanted to be out there, too, instead of inside with all of these boring women who were staring at him.  He said it pretty clearly. While I was excited to hear him say it, it wasn't really the best timing when his mom was trying to get him speech/language services!!! 

I'm really glad we're going to be getting help in this area.  I will be beyond ecstatic when he finally looks at me and says 'mama'!!!  It's got to be coming soon!!!!!!!!!!!!!!!

MUCH LOVE!!!!!!!!!!!!!!!!!

Big Day!

Today we had 3 biggies...Parents as Teacher's 18 month evaluation, neurologist appointment and 18 month pediatrician.

18 month evaluation


Go Rams!!!  How cute am I????



There are five areas Luke was evaluated in - communication, gross motor, fine motor, problem solving and personal-social.  To start off with - Luke rocks the personal social!!  He wasn't terribly behind in the gross and fine motor areas - which was good.  He's not quite in the normal range but he's not far behind.  He was behind in problem solving - which isn't surprising to me.  He doesn't really get upset about much.  If he can't reach something that he wants, he just moves on.  So he doesn't apply problem solving skills.  He doesn't show interest in putting marks on paper or copying us when we do but that could be because he has a really hard time holding a crayon or pencil.  That was included in the problem solving area.  And.....communication.  Well, it wasn't a shock for us but he scored 0.  Our PAT educator, Lori, went home and assessed him based upon the information I had given her and at this point, developmentally, he is communicating like a 10 month old.  It was a little bit of a punch in the gut even though we knew he was delayed. 

Neuro appt.
I had a HUGE list of questions for Dr. Smyser which he patiently sat with us and answered.  I LOVE  him because he sat in the room for probably 45+ minutes, didn't look at his watch once and was totally focused on us and Luke. So here were the major points of conversation...
Of course it's great news that Luke has continued to be seizure free.  However, we do get a little worried about times we don't see him - the night.  Dr. Smyser assured us if we ever have a time where we are concerned about night time activity we could do an overnight EEG.  We don't have any real reason for concern right now but it's nice to know it's easy enough to get it checked out if concerns do arise.
I've had some concerns about his peripheral vision lately.  It's probably nothing but we're going to get him checked just in case.  He will run into something on the ground and he never looks down to see what it is.  I've also set food in front of him before without saying anything and he'll continue to fuss until I physically show him.  It didn't raise any huge red flags for Dr. Smyser but since it seems to be somewhat unusual, we're going to have it checked.

Luke's head size was my biggest concern today.  But I really don't have much to report.  It has grown.  Of course.  But honestly we got caught up in some other things so we forgot to check back with him after he went to look at Luke's measurements from last time.  While we were talking about our concerns, Dr. Smyser assured us that he didn't see any reason for alarm still at this time.  However, he wants us to meet with a neurosurgeon so that we have someone we are comfortable with if the time comes that it has to be addressed surgically.  He said he would rather us meet with someone while we were calm rather than at the time when we HAD to meet with one.  The concern is still hydrocephalus (fluid build up in the skull) which would result in surgically implanting a shunt.  Hopefully we will never get there but it will be nice to meet a neurosurgeon before it's ever a real issue.  I have an e-mail in to Dr. Smyser's office to find out if his growth is starting to even out or if it's still skyrocketing.

Every time we go to the neurologist, we also meet with his physical therapist.  She was watching Luke walk bare foot in the office in his diaper.  She noticed immediately that he is snapping his right knee when he walks.  Her conclusion is that the shoe inserts that he wears (SMO's) are not appropriate and we probably need taller ones (AFO's) to keep that knee bent forward.  Also his  inserts are getting too small already anyway.  Soooooo they wanted us to stay and meet with the lady from orthotics today but it was getting too late and Luke was losing steam fast.  The PT said that she would recommend starting with a strap across the back of his current style of orthotics but she doesn't have high hopes that it will help.  If it doesn't help then we go on to the taller ones.  We have that appointment next week.
Dr. Smyser agrees that communication is a problem.  He is recommending weekly speech/language therapy.  He is also recommending that we increase OT to weekly sessions as well.  Now....we wait for our First Steps meeting next week. 

Pediatrician
Well, they can't measure Luke's head anymore because their head circumference tape isn't big enough.  And he got 3 shots.  That about sums up the pediatrician appointment. I used to always be eager to get Ben's percentiles for his height and weight and head circumference..I realized, just now, that I didn't even ask for that today.  Things change...


So that was our day.  Overall it was fine. I'm nervous about our First Steps meeting.  I understand they have guidelines to follow to grant services.  I hope that his delay is significant enough to get speech/language services.  However if it's not, we can always go the private route.  It will just be more difficult (time wise).  We might end up doing both anyway since the gap between what he can do and his actual age is so wide at this point. 

Also, the DAY after my last post...Luke ran his first fever!!  Knocking on wood DID NOT HELP!!  But we survived it.  It was certainly stressful but he was OK.  Through the course of the next week, he ran two more fevers which finally erupted into strep!  And then Ben got it less than 24 hours later!!!  Of  course.  And through it all - no seizures.  Whew. 

We also received word from someone at Seattle Children's Hospital about a research study they are doing specific to macrocephaly and polymicrogyria.  I mentioned this awhile ago and it is finally taking off.  This is the hospital that Dr. Dobyn's - THE PMG guy (among other brain malformations/abnormalities) - is at.  They have our paperwork, blood, and all of Luke's MRI scans.  We may never hear anything from them but we may also get some long sought after answers!  It's pretty exciting.  The lady that I've been talking to in Seattle said that macro and PMG is a 'hot topic' right now! 

We're pretty tired.  Luke was out within minutes tonight after such a long day  We knew that his language was delayed but for some reason it's a little more upsetting than I expected it to be.  I want to stay on top of things but I think that deep down, I'm always still hoping that maybe this PMG thing really won't affect us that much or be that big of a deal.  The seizure was a big whammy and now this 10 month developmental age for language. :(  Things are going so well overall and we are staying focused on that.  Hopefully with the right resources we can start tackling the language and speech delay and close that gap quickly.

OK, that's it for now. This is my favorite current picture of the boys.  Ben got a new big boy bed and they both LOVE it.    In my never ending quest to get the perfect picture of these two little monkeys, I asked Ben to put his arm around Luke....Poor buddy.  I won't do that to him again! 

Last thought....we are thankful everyday that Luke is doing as well as he is.  Watching him walk across the backyard and watching he and Ben head butt each other and listening to them laugh in the bathtub...we know these are all HUGE blessings since we didn't think he'd be able to do any of these things.  Thanks for reading. 

Love from us.

Lots of good stuff!!!

So it's been awhile since I posted - consider that great!!  I've had several people ask how Luke is doing so I thought I'd update.After the seizure, he had a couple weeks that were kind of scary.  On many levels...scary because we were just waiting, first of all.  And scary because Luke kind of backtracked developmentally.  He was walking short distances independently before the seizure and for about two weeks after, he lost it.  I thought maybe I was just over analyzing but our PT agreed that his balance was definitely affected.  But now!  Oh, boy!  The kid's a wonderful, glorious NUT!  He is EVERYWHERE!!!  AND it all really started at the end of 16 months - well within the normal developmental range!!  He's doing this thing where he walks with his hands in his mouth.  We're trying to break him of that habit but having no luck so far.  He is also getting ALL of his molars at once so that doesn't help.  But we are still working on it. 

As far as we can tell he has had no more seizures.  I know that his diagnosis hasn't changed and he can have another one any day but everyday that passes without one is sweet.  It's been tough leaving him with anyone else. We purchased a video monitor that helps ease my mind at night.  I'm a fairly light sleeper so I hear him moving pretty often and can just look over and see what he's doing.  I went in and talked with his teacher and the director of his daycare before he went back.  They were really great and I'm comfortable with their knowledge of seizures and their plan if one happens. I also was in contact with someone from the Epilepsy Foundation at my neurologist's suggestion.  They made a few preventative recommendations that we've been trying to do such as keeping his diet low in sugars, not getting overheated and making sure he's getting enough sleep.  It will be even scarier now when he gets sick because fevers can trigger a seizure although I don't think he's ever run a fever yet.  (KNOCK ON WOOD).

He is still happy, happy, happy.  Even more so now that he can really get around.  We had him evaluated for speech/language therapy this summer.  The therapist said she had several concerns but he wasn't really at the bottom of the barrel so he probably wouldn't qualify for services at this point. She was considering giving him a therapist once a month to continue working on decreasing the drooling and loss of thin liquids(since the evaluation his swallowing has really improved, we're not concerned about thin liquids anymore.  The drooling is an entirely different story...)

However, since then I have seen him around other kids approximately his age and have gotten feedback from others and I'm afraid we are starting to see a rather significant language delay.  Now, if I wasn't looking for this would I think anything of his language delay?  Probably not.  He's a boy and he's working really hard on his gross motor stuff.  Both factors tend to slow down language development.  Ben was a little slower in the language department, too.  BUT since we know Luke is predisposed to language problems - I'm ready to do battle to get him services to head off any problems in the future.  I used to think he had some words but realized he doesn't really say them with meaning.  He does use 2 signs and can point to a few body parts.  So that is all good.  He's also making lots of noises and repeating a lot of sounds - which is also good.  I think I was seeing things I wanted to see for awhile because I so desperately want everything to be OK.  It is OK, though, even if he is delayed with it.  As long as we know and get it taken care of!

Our Parents as Teacher's educator is doing an 18 month screening on him in September.  We also have our 18 month pediatrician appointment and neurologist appointment.  These were all carefully planned BEFORE our First Steps reevaluation.  The speech therapist who evaluated him will be present as well as our therapists and coordinator.  I'm busy reading up on language development (thanks, Sue!!) and what's within the normal range.  I truly believe the reason Luke is doing sooooo well is because of all of the early intervention.  If speech/language is going to be a problem - I want to start taking care of it.  Now. 

And...Luke and Ben!  Delightful!  Totally normal, crazy brothers.  One of their favorite activities is to take turns screaming - yes, screaming.  It's pretty funny.  Another one of their favorite activities is head butting each other.  See?  Totally normal:) 

I'll update you in September after all of our meetings!! 
Much love!