Thursday, September 29, 2011


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!

Tuesday, September 20, 2011


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 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!!!!!!!!!!!!!!!!!

Thursday, September 15, 2011

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. 

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.