Wednesday, March 23, 2011

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!!

Friday, March 18, 2011

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!!!

Wednesday, March 16, 2011

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 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!!