Wednesday, June 22, 2011

Answers...sort of, not really.

Just a quick update - first of all, thanks. Thanks for all the kind words that came our way today. 
We had a great day - Luke woke up in a great mood and had a perfectly uneventful day.  It was easier than I thought it would be just to get back into our routine.
I did hear from our neurologist about the EEG from yesterday.  The EEG came back normal which means at the time the EEG was done there was no seizure activity detected in his brain.  At that point, I thought it meant that maybe he didn't have a seizure but he said that from what we described he's fairly certain he did.  All the EEG results did was confirm our decision not to go ahead and start anti-seizure medication for Luke right now.  Dr. Smyser said that seeing the results made him comfortable with NOT starting Luke on anti-seizure meds.  Where it leaves us is exactly where we were when we woke up yesterday morning - due to Luke's brain malformation he is more prone to seizures.  Where, when, how often those will occur - we still have NO answers.  He could have another one in 5 minutes.  He also may not ever have another one again.  So we're in exactly the same spot we were when we brought him home from the hospital - except we've dealt with and made it through one seizure. 
We're going to go ahead and read up on different seizure medications so that we're prepared if it happens again.  Dr. Smyser said that if he has a second seizure then we'd probably want to go ahead and start him on anti-seizure medication.  At least this way we'll have time when we're a little calmer to make some decisions that will best suit Luke.
Dr. Smyser knows a doctor in Seattle who works with this doctor who is 'THE' doctor to go to if your child has PMG.  He has shown this doctor Luke's MRI's and also talked to him last night about his seizure to see if there is anything else we should be doing, any tests we should be having Luke go through.  They are going to include Luke  in a research study.  All we have to do is have Luke's blood drawn and sent to Seattle.  We have to wait for them to contact us to get the ball rolling.  It sounds like with ongoing research and comparing Luke to other children who have similar diagnosis they might be able to tell us more about what caused Luke's PMG and maybe more of what we would expect. 
Again - thanks for the kind words today.  It means a lot to us. 

Tuesday, June 21, 2011

The Waiting Game...continued.

So far Luke has been exceeding all of our expectations.  He has been 'beating' this brain malformation and doing pretty much everything a typically developing child should do.  When we first brought him home, because of the various seizure warnings we were given, I was often worried about odd movements he would make or when he was sleeping too much or if he was acting 'funny'.  You know, I was worrying about all the normal things babies do anyway!!  I was sure, just positive, that he was going to have a seizure and I would miss it. 
Time went on and I eased up.  I  stopped worrying about it constantly.  The thought of him having a seizure never left my mind but I eased up and relaxed. 
But you don't.  You don't really relax and you don't 'miss' it.  And now, sadly, we know. 
(Let me preface what I'm about to write by telling you that Luke is totally back to his normal, happy self at this point in time!!)
This morning, Dan found Luke laying face down in the family room.  He was fairly limp and not really responding to him.  Luke was NOT unconscious.  Dan brought him upstairs to me and you could tell he was awake but he wasn't able to keep his head up and he wasn't looking at us.  We knew something was wrong.  He kind of came to and became responsive to us.  We were both really upset.  I decided to call our neurologist office.  We left a message for the nurse to call us back.  In the meantime, Luke was sitting up in Ben's room and kind of trying to play.  He was falling over a little and having a hard time crawling.  Then he threw up...for the first time.  While I was holding him so Dan could clean up, his eyes were focused to the right and he was pretty limp again.  While I was trying to soothe him and get his attention.  He threw up again. And again. 
All of this probably happened in a matter of 5-10 minutes.  The nurse from our neuro's office called back.  I described what had happened and she consulted with Dr. Smyser.  They decided that it did sound like a seizure and told us to come to Children's ER. Luckily for me Dan was off this week and also my mother in law was available to come get Ben.  As we were getting ready to leave, Luke seemed very tired but way more focused.  He fell asleep for a little while on the way to the hospital.
We were at Children's most of the day.  We were answering the same set of questions for numerous people...What happened?  How long was it?  Which way were his eyes looking?  Which way was his head facing?  How long before he responded to you?  Has he been ill? 
We saw our neurologist and the neurologist on call.  They decided to do some blood work to rule out the possibility that maybe it was all a fluke and he had a stomach bug or something.  All his bloodwork came back normal.
They also decided to do an EEG.  They said that it sounded like the seizures were firing from the left side of his brain because he was rolling his eyes to the right and he seemed to be resting his head towards the right when Dan found him.  They had to glue 26 leads on his poor head.  He did not care for that situation!  But then, luckily, he fell asleep for most of it.  We'll get the results of the EEG in 2 days. 
Our neuro said it sounded like he had a 'cluster' of seizures because they said it sounded like he had 2 seperate seizures in the time the whole 'episode' happened. 
And now we wait.  Again.  Still.  We wait.  Obviously no one can say when or if he'll have another seizure.  Dr. Smyser said that we could opt to go ahead and start medication but we want to give it a little time and see what happens.  He's going to send us some literature about different anti-seizure medications so we can decide what looks *best* (ha) if a next step has to be taken.  It kind of sounds like with his guidance, we can choose the one with the most optimal side effects....If that even makes sense. 
He didn't have any more episodes all day. By the time we got home and fed him something more than animal crackers and apple juice he was pretty much totally back to his own self.  He was happy and sassy and ready to play. 
Now Luke's sleeping and I wonder how we sleep easily tonight (or the next night, or the next....).  We're not the first parents whose child has had a seizure (duh).  But it is our first seizure with Luke.  And I know we'll sleep - we're both wiped out today.  But how do we sleep easily?  When Dan was finished putting him down for the night, my heart was just racing.  Dan's already upstairs checking on him right now.  Not that it will really tell us anything just by looking at him - but we'll feel better. 
We are trying to remember that he's still doing sooo well.  We are amazed and proud of him everyday.  We'll see where this new road takes us....Thanks in advance for your continued prayers and positive thoughts. 

Wednesday, June 8, 2011

Making progress!!

video
Luke is quickly approaching 15 months!  He has his orthotics and is adjusting easily to them.  The inserts are much smaller than I expected and he is very patient while we get them on in the mornings. He has been taking a few steps here and there.  He's not walking on his own...yet! This video is during his PT session. Walking was one thing we were not sure if Luke would ever be able to do.  Now it's looking like it's going to be one more thing that he CAN do!  Yeah!
Luke is continuing to eat well.  He's doing MUCH better with his drinks, too.  He doesn't lose a lot of liquids when he is drinking anymore.  Drooling continues to be an issue that we are working on with him. 
We'll have his 15 month pediatrician appointment this month.  I'm a little worried about head size.  I'm hoping that maybe it's starting to slow down! 
He seems to be understanding more and more when you talk to him.  He understands (and ignores - typical!!) when we tell him no.  Luke loves to get into the dog's room and play in the water.  Luckily we have Police Officer Ben to let us know when he's up to no good!!