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. 

Making progress!!

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!! 

Team Luke

"There is no such thing as a self-made man.  You will reach your goals only with the help of others."

-George Shinn

Last week we had Luke's 1 year First Steps evaluation.  Basically it's like an IEP in a regular school setting.  Our coordinator, PT and OT were there.  They are all amazing.  Just amazing.  I am struck again with how very fortunate we were (are) to get Luke's diagnosis so early. He has pretty much met all of the goals that we made at his 6 month appointment.  We are continuing to work on fine motor skills and walking.  He has taken a step or two towards someone but isn't walking independently yet. 
Our PT has been watching his feet carefully because he was walking flat footed with his left foot. She now notices it in both feet.  We met with a man this morning that casted him for these special inserts to put in his shoes to help with that.  He thinks at this point Luke needs moderate support.  When he examined Luke he said that he does have good arches so that is really good.  He was really sweet with Luke and I'm excited to get the shoe inserts.  I believe they will look something like this http://www.dafo.com/products/dafo-4/.  They are less obtrusive than I thought they would be so that's good.
We are sticking with PT weekly and OT every other week.  He's made good progress with swallowing liquids so we're not pursuing the speech avenue.  We were going to have to go to the hospital and get a swallow study done to rule out swallowing issues.  No one that works with him feels like he has any kind of swallowing issues, though, so we decided not to go ahead with one more test....Our OT is going to continue to help with the liquids.  He's doing really well with thicker textures through the straw - smoothies, applesuace, pudding.  We haven't tried a milkshake yet but I'm sure he'll dig it!!
Luke also had his 5th ear infection about 2 weeks ago.  Grrr.  Our pediatrician referred us to an ENT so we can talk about getting tubes.  My fear with his frequent ear infections is that it could be causing him to hear things differently or less.  Since speech could be a problem I DO NOT want him to continue getting ear infections!  That appointment is coming in a couple of weeks. 
Thanks for being a part of Team Luke!!  Happy Easter!
xoxo Mel

MRI Report

We had Luke's MRI yesterday at Children's.  We were really fortunate that they were able to get us in so quickly so we didn't have to wait and wonder.  We heard from Dr. Smyser this morning and it's all pretty good news. He does have mild ventriculomegaly (enlarged ventricles) which is why we went for the MRI when I was pregnant.  He said it is NOT hydrocephalus (fluid on the brain) which would require the surgery and shunt. He had a neurosurgeon look at it yesterday, too. He agreed with Dr. Smyser.

So at this point it's not a 'game changer' (Dr. Smyser's words). We can still expect the same development from Luke that we've been getting. We're still on the lookout for seizures, developmental delays, other problems - the same as what we're already watching for with the PMG. He said we'd continue to watch the growth curve and keep a little closer look at his head.

Apparently kids grow really quickly between birth and 2 and then kind of level out. If his head doesn't level out like it's supposed then we may have to do another MRI to see what may be going on but he won't really make predictions about that at this point in time.

I'm a little disappointed that his ventricles have enlarged enough to be the ventriculomegaly, but oh well. He didn't really say if it increases his chances of having seizures, delays, etc. So pretty much nothing has really changed from the PMG diagnosis.

He also said the PMG has not changed at all - which was expected and that his brain stem looks normal. That's good.  We're happy that it is over and that the news wasn't bad. 

 



Birthday boy!!



The Good, the Bad and the Unknown....

The Good...
Luke's neuro appointment went great.  Dr. Smyser is pretty conservative when making predictions about Luke's future & abilities - which is smart.  But he said he was excited about how well Luke is doing and for a child with PMG he is a 'star student'.  Yay!  He confirmed that Luke does indeed have low tone overall but it's not even significant enough to have an official diagnosis (there is a name for that particular condition).  He also said that we should be able to make better predictions about Luke's future abilities when he turns two.  He said it's great that every time he sees Luke he is making constant progress! 

We met with his office PT also who talked to us about Luke's liquid swallowing issue.  She wrote us a script for a speech therapist to work specifically on the coordination of swallowing liquids from a cup or straw.  I consider this good because even though we might be acting overly cautious here I can't help but to think that all of the early intervention has worked miracles for Luke.  So I'd rather get on this sooner than later.  Hopefully we can get the therapist through First Steps but if not we'll just do that one on our own.  I have a call in to our First Steps coordinator right now.  One thing that the therapist we talked to mentioned (as well as our OT and our Parents as Teachers educator) is to have him swallow thicker liquids - milkshakes, smoothies...Hmmm....NOT such bad exercises for him:)  He had his first smoothie this morning and LOVED it.  He did ok with swallowing - lost some but not a ton of it.

The Bad...
The geneticist noticed that his head size is not only continuing to get larger but substantially so.  His body is following this growth curve but his head is off the charts.  It's always been off the charts but it's not following a curve.  When she showed us the computer growth charts you could see his body going in this curve and his head chart is pretty much going straight up.  Her office is connected to Dr. Smyser's office so she went over to talk to him.  At the point she went to confer with him he was actually looking at the computer charts, too.  They decided that Luke needs to have another MRI to rule out any other problems.   The very first MRI while I was pregnant was ordered because the ultrasound was showing not only extremely large head size but slightly enlarged ventricles.  When Luke had his own MRI several hours after birth, his ventricles were measuring normally.

If his ventricles are measuring large then he will likely have to have a shunt surgically placed in his brain to drain the ventricles.  That is worst case scenario....with that being said - they both agree that he is not presenting any of the symptoms of a child who has enlarged ventricles (there is a scientific word for that, too, but I can't say it so we'll just stick with enlarged ventricles) so hopefully this is just a precaution.  However his little (big) head continues to be a medical mystery.  The geneticist said she has never seen a child with a head that is growing like Luke's.  Grrr.

I followed up with his neurologist this morning and he restated several times that he is impressed with Luke's progress and is NOT presenting any of the issues that a child would have if he had enlarged ventricles.  So that is promising.  He is working on getting is scheduled ASAP.  Please keep your fingers crossed for as soon as possible so we can get this out of the way.  He does have to be put under for the procedure which I hate, too. 

He also has his 4th ear infection (not as big of a deal as the MRI but frustrating to me all the same!!!). 

The Unknown...
I am really, really hopeful that the MRI is just a precautionary measure.  I hope that it just brings us peace that his ventricles are still fine and the rest of his brain is developing normally (well, normally for him anyway). 

So we're waiting.  Again.  I must say that yesterday was an emotional roller coaster for me.  I was so overly excited before and during his neuro appointment.  I just knew things were going to go great because how could they not???  Luke has been making progress and pretty much been a 'typically' developing baby.  And then, as my sister in law put it, my balloon burst.  I was deflated. 

I'm trying to hold on to the positives - he's making steady progress, he's super busy and interested in the world around him, he's not having seizures.  We are so, sooo lucky with how well he's doing.  I'm hoping and praying that the MRI comes back normal.  I'm trying to remember that just because we had a minor set back, it doesn't mean that it didn't go great.  In my rational mind I feel good about his MRI. It will give us more information and if it's not great news at least we are catching it early before he starts to have problems because of it.  And it's fixable...

But in the other part of my mind - I'm worried.  We never expected the news we got after our first MRI.  Everything has been going so well for Luke.  I don't want anything at all to happen to set him back. 

I'm sure there's something I'm forgetting but that's it for now. Our fingers are crossed that the MRI will be scheduled for next week.  Hopefully we'll find out later today.  Keep positive thoughts coming our way!  Thanks!!!

Happy Birthday, Luke!!!

Tomorrow is Luke's birthday.  We had no idea what this year would bring.  We had so many fears and concerns about Luke's health, abilities and happiness. 
Well, as you already know, his health has been great - typical...ear infections, runny noses, coughs. 
His abilities...so far he's pretty much meeting all his milestones on time.  He's pulling up and cruising.  He's standing for a few seconds (few) unassisted.  He is busy, busy, busy!  It took me 5 minutes just to get his PJ's on tonight because I couldn't get him to stay still long enough to even get his diaper on!!!  The only concerns we have at this point (which we wouldn't have if we didn't know about his PMG) is that he's really, really, really drooly and he is having a little trouble swallowing liquids from a sippy cup.  Both of those things could indicate low tone in his jaws.  He does have slightly low tone overall (low muscle strength).  We're going to talk to his neurologist about those things and see if there's anything we need to start doing.

His happiness...I remember when we first found out about Luke's diagnosis one conversation that kept coming up between Dan and me was that we just wanted to know he was happy.  We wanted to know he KNOWS who we are and who his brother is.  He is so happy.  He laughs and giggles and smiles.  He adores his big brother (I'm sure someday that feeling will be mutual!! :) )  Just kidding - Ben loves Luke when Luke is far, far away from any toys!!! Luke knows who we are and smiles at us all the time. 

Dan and I both know that his diagnosis hasn't changed.  We know that we still face challenges ahead of us.  But we are so happy with the way this year has gone and how great Luke is doing.

We are thankful for all the help we have with Luke and for all the people who have come together to make this such a wonderful year.  His OT and PT have been with him since he was TWO weeks old!!  They've known him just about as long as we have!!!  They are so knowledgeable and loving with him.  We are so lucky to have them.
We have our neurologist and geneticist appointment tomorrow.  Then we have his one year check up with the pediatrician on Friday.  I'll update after all of that.  Hopefully it will be a really short post!! 
Thanks for all of your words of encouragement this past year.  Thanks for checking up on Luke and our family.  It means a lot to us to know we have so many people behind us!!! 
Have a happy, happy Saint Patrick's Day...I know we will. 

Love from Dan, Mel, Ben and ONE YEAR OLD Luke!!

Milestone Meeter!!!

Crawling....CHECK!

Pulling to stand....CHECK!

Babbling....CHECK!

Getting into sitting from laying down...CHECK!

I hope everyone had a happy holiday.  We certainly did!  Luke is doing great.  I continue to be amazed at how well he is progressing.  He is crawling although it's not his favorite mode of transportation!  He prefers a sit and spin kind of way to get around. He is super interested in his toys and his big brother.  He is really focused on us.  He is doing great with eating different textures (when we remember to give them to him!!). 

One of my favorite Christmas movies is White Christmas.  There is a song in the movie called 'Count Your Blessings (instead of Sheep)'.  That song has really hit home this past year.  Dan and I are so blessed to have our two rowdy boys, our super supportive family and our awesome friends through all of life's ups and downs.  We talk often about how lucky we've been with Luke so far.  We know that things can change any second but we are concentrating on how wonderful things are - right now.  

Our next big appointment is his neurologist appointment in March for his 1 year birthday. 

As always - thanks for checking up on Luke and for your prayers and your support.  We are truly blessed.