Fork In The Road

I was taking a much-needed nap. We've had a cold for a few days so we're all cooped up feeling icky and tired. I woke up to my phone buzzing and answered it immediately when I noticed it was from Cleveland. It was Dr. Lachhwani. He hadn't talked to us since we've been home from the hospital and wanted to follow-up and see how Philippe and we are doing. As I told him the medicine has helped slightly (Philippe has had 1 seizure each week, instead of 2 or 3), he looked over the results from all the tests together to get an idea of the "big picture". 

He told me Philippe has a malformation in his right frontal lobe, which no other doctors had noticed in his previous MRI's. He said it's easy for some doctors to miss if they don't look at MRI's everyday or don't know what exactly to look for, but to him it was obvious. So here's where it gets tricky... Philippe will not out-grow seizures; he will continue to have them the rest of his life. We've tried all the "biggest guns" to fight his seizures: the Ketogetnic diet (which works for some patients to *cure* epilepsy, but after 2 years didn't work for Philippe), we've also used Phenobarbital, Keppra, and Topamax, which are some of the most successful anti-seizure medications. Basically, since each of these things haven't completely controlled Philippe's seizures, probably nothing will be able to his whole life. 

Dr. Lacchwani told me the malformation is not just one tiny spot, or even a small area in his brain, but that it's "significant". His best bet for his future is to remove the affected area through surgery. But the affected area also runs along the motor strip, and at this point Philippe's motor skills are "hard-wired"; he is equally strong of both sides of his body. If we do surgery and remove part of the right side of his brain, the left side of his body will be affected, but we're not sure how much. Since his motor skills are developed, his brain will not re-route those functions, so whatever portion of his motor function gets affected would be lost. It's possible he could lose peripheral vision on his left side, lose feeling in parts of his body on the left side, he might not be able to control his hands or use his finger tips for delicate tasks, and if he loses strength in his left leg he might be clumsy or walk with a limp. The up-side to surgery is that by removing the malformation from Philippe's brain it might reduce or eliminate his seizures. It also might help him over-come some of his developmental delays and reach milestones more quickly with less effort. The key is MIGHT. There's no way to know the out-come of surgery without actually doing it. We can keep our sweet, brave, happy little boy exactly the same: giving him medications (that dont really work) and lots of therapy and extra attention. He will most-likely continue learning at his own pace and who knows how far he will go- if he'll ever be able to "catch up" to other kids, if he'll be able to function in school, if he'll be able to talk or even grasp simple concepts. OR we can choose surgery: he might be seizure-free, or he might be worse off than he is now not only mentally but also physically.

This is our fork in the road.

What do you do when you have to choose for someone else? What do you do when every option is just as scary as the other one? How can we possibly make this decision for our baby boy?! But we don't have any other options. Now that we FINALLY have this answer, we HAVE to make a choice. If we do nothing, we're choosing to not do surgery, which is still making a choice that we might look back with regret and think "why didn't we do that", and we will always wonder what if... If we do choose surgery, part of his brain will be taken and we won't have a way to put it back. If something goes wrong, we won't be able to un-do it. Then of course, there's always the fear of him going into surgery and sometime throughout it have the Dr. come out and tell us that our little boy didn't make it. I know you shouldn't think that, but you just can't help but think the worst.

Right now we're waiting for our doctor to meet with the rest of the board of doctors where they will talk about Philippe and discuss what they think we should do. Then he will talk to us again and we'll go from there. Until then, we're crying, praying, and searching for answers. Answers about what to do, and how to find the courage and strength to actually do it. We go to work, we do our chores, and run our errands but there is not one moment that we stop thinking about this. If you see us and we look lost in space, that might be why. It is like we've hit that wall, fell back, got up and wonder how we can get through. 

Jason Mraz

"I Won't Give Up"

Hmmmm ... Hmmmm ... Hmmmm ... Hmmm ...

When I look into your eyes
It's like watching the night sky
Or a beautiful sunrise
There's so much they hold
And just like them old stars
I see that you've come so far
To be right where you are
How old is your soul?

I won't give up on us
Even if the skies get rough
I'm giving you all my love
I'm still looking up

And when you're needing your space
To do some navigating
I'll be here patiently waiting
To see what you find

'Cause even the stars they burn
Some even fall to the earth
We've got a lot to learn
God knows we're worth it
No, I won't give up

I don't wanna be someone who walks away so easily
I'm here to stay and make the difference that I can make
Our differences they do a lot to teach us how to use
The tools and gifts we got yeah, we got a lot at stake
And in the end, you're still my friend at least we did intend
For us to work we didn't break, we didn't burn
We had to learn how to bend without the world caving in
I had to learn what I've got, and what I'm not
And who I am

I won't give up on us
Even if the skies get rough
I'm giving you all my love
I'm still looking up
Still looking up.

I won't give up on us! (no I'm not giving up)
God knows I'm tough enough (I am tough, I am loved)
We've got a lot to learn (we're alive, we are loved)
God knows we're worth it (and we're worth it)

I won't give up on us
Even if the skies get rough
I'm giving you all my love
I'm still looking up

More updates

Lately a lot of people have been asking me if we've heard back from Cleveland or not and how Philippe is doing. So here's an update:

Philippe is on a different medication now called Topamax. It comes in capsules and he takes it in the morning and at night. We had to slowly build him up to the dose that the doctors want, we couldn't start it off at the full strength and right now he is at a level that if the doctors feel like they need to increase his dose they can. This medicine has reduced the number of seizures he has, before he was having 2-3 seizures a week and now he's only had 1 a week so far. My guess is that the doctors will probably increase the dose to try and reduce the seizures.

Also, for the last 3 months he's had some Gastro Intestinal problems, his poopy diapers are similar to what a baby's diaper would be, meaning that it's not a solid piece but it's always very runny and acidic, which frequently causes his bum to be red and irritated, or easily get yeast infections. So we have to change his diaper as soon as we can or else it gets bad and he cries since it burns and hurts. So to be able to address this Philippe got to go see an Allergist, we knew he was allergic to nuts and eggs, but we didn't know which nuts was he specifically allergic too and we wanted to find out if he was eating anything that he was allergic to and we didn't know about. We are still waiting to see a GI doctor, but the appointment is not until October?!?! Can you believe that, they did not have any openings whatsoever for new patients until october?! I'm sorry, but maybe you can help me here because I simply do not understand how it's possible to not have any openings with any of the GI doctors? Are there that many people that need GI attention right now that there's not one slot until almost 2 months away for him to see my son?! What do they do with emergencies, and shouldn't this be taken care of right away, what if within those 2 months that we are waiting for the doctor his condition worsens and causes some permanent damage on his digestive system, even though it could've all been avoided if treated promptly?! This right now is one of my biggest frustrations.

Also, we went and met with his Neurologist here in SLC Primary Children's, and had a talk, mostly to introduce him to Philippe and what his situation is. The sad thing was when we asked him if Philippe's epilepsy is something that he'll grow out of or something that will stick with him throughout the rest of his life... the answer:

Most likely... for the rest of his life.

I was quiet in that office. Many times had I asked myself that question, and many times I had given myself that same answer. But this was the first time that one of the doctors had  been so honest with us. My face was still, but in my mind, I was weeping as I am right now. 

I guess this is one of those things where you just feel so impotent and wish there was something you could do to make it go away, to make it so that he wouldn't ever have to worry about it and not have to be taking medicines his whole life. To make it where he could be able to do whatever he wants in his life. But sometimes that's exactly what you can't do.

Today while at church, I went over to the nursery to check on him and I saw my wife standing outside talking to one of the ladies that help there. As i got closer, I noticed that both of their eyes were teary. Later I asked Candice what happened and she told me this:

"A couple weeks ago Philippe looked into my eyes, and it was like looking into the eyes of an angel. He's a very special boy with such a sweet spirit. I'm so glad that I get to spend time with him because he has blessed my life just being near him."

I'm grateful for my son, he is indeed the sweetest and he's always willing to give you a smile. You bless my life too buddy, everyday! 

Your smiles make my day!

The Latest Milestone

Roll from your tummy. Sit down and hold your self. Crawling. Walking. Running. Talking... All milestones.

You know? It's always been hard to see how other babies would start reaching these milestones and I would turn around and look at my buddy and wonder if maybe tomorrow he would. But he didn't, within a few weeks he started getting behind all the other babies that were born around the same time he was. Soon, those weeks turned into months, months that he was behind in his development, milestones he wasn't reaching but he should've.

Today, Philippe is still reaching milestones and every time he does something new as little as it might be it fills us with happiness and we cheer for him and celebrate! He turns around and looks at us with a big smile on his face and know how proud of him we are, but most of all his smile reflects how proud of himself he is and how happy he is he's learned something new.

Sometimes his milestones can be a new sound, or learning how to point, learning how to wiggle and "dance", or shrug his shoulders; but it's his latest milestone that has touched my heart so much. It took me a while to realize it, but this last week while we were meeting my brother and my sister in law in Vegas for a quick family trip, I saw it and I knew my little Philippe had learned something new. As we walked through malls or streets, he would get sick of being in the stroller, we would pull him out and grab his hand so he could walk by our side. One of those times, we took him out of the stroller, he stood there. My brother extended his hand towards him. Philippe looked up straight at him, and then put his little hand on my brother's. Then he walked with him happily.

It might be silly for some, but it's a big deal for me. It means more than putting his hand on his. It means trusting in someone you love, and if my son is starting to learn how to trust in others and show it to them, it means a lot to me. A WHOLE LOT. I love you buddy!

Marcel.