My Favorite Deputy

Why is Woody on the bathroom floor? More importantly, why do we care??

 

When toddlers move about from room to room carrying their favorite toys or blankie in hand, many parents wouldn't think much of it. They probably wouldn't recognize this as an accomplishment or even realize it's a milestone. But we're not like many parents. We notice every little thing our amazing little guy does because his skills and milestones come much slower than that of typically developing children. 

Today, for the first time EVER in his 4 years of life, Philippe came walking in our room with a toy in his hand!!! His Woody doll to be specific. I was so shocked and excited I froze in place, speechless, and almost cried! This was so great for 2 reasons: 1, Philippe almost never even looks at toys that don't have lights, buttons, and sounds, and 2, usually he sits with a toy and hits the same button over and over again until he simply gets up and walks away, but he has never grabbed a toy and walked around with it in his hand before! 

Progress is being made! He's learning and growing and I'm so happy and blessed to have a front row seat to it every day. He's the BEST!

A horrible nightmare!

This january we got to go to Orlando with the family. If you would like to read about it, click here.

However this is not about the fun part of the trip but about something I wish to no parent EVER. We got there a day before around 2pm, took care of the rental car and drove to the resort to rest because we had been up since 3am! We were so tired, and if you have kids, and you've been on a plane with them on a 3 1/2 hr flight, you know what that's like. 

Anyways, we got our room, and we set the the hide-a-bed for Philippe and put Belle on the crib to sleep for the night. However Philippe would not go to sleep, he was awake and playing, watching TV, and wanting to eat more and more. Finally, he took a few naps, and around 2am he woke up again, I (Marcel) took him on a drive and went to Walmart to buy breakfast for the next morning. THen we came back and entertained him a little longer. Finally I put him to bed again around 5 am. I went to bed and at 8 am I finally woke up. Everything was quiet, Candice was sleeping and so was Belle. I got out of bed and went to check on Philippe, but when I did, HE WASN'T THERE! I ran around the room looking under tables, inside closets, behind counters, everywhere and MY SON WAS NOT IN THE ROOM! I ran into the bedroom and yelled PHILIPPE IS NOT HERE! PHILIPPE IS GONE!!! Candice jumped out of bed and did the same thing I did while calling his name. Philippe is so curious and observative and likes to play with switches and buttons, well, he figured out how to unlock the door and remove the safety lock too, turned the door handle and walked out to explore.  I ran outside looked both ways and... nothing! I ran upstairs and downstairs and around the parking lot screaming his name but he was nowhere to be seen. I was so close to break down but the thought of my son being lost didn't let me and I simply kept running, I heard water and remembered that behind our building there was a lake with a fountain, Philippe LOVES water and for a second I saw in my head his little body floating on the lake, I ran to the lake but he wasn't there either. I ran back to the room and we had LOCKED OURSELVES OUT with Belle still being inside the room by herself, at least she was in her crib, but our phones were inside too! I ran and stopped a man that was walking to his car and said "Please help us, my son is missing, he can't talk, he has autism and epilepsy, and we just locked ourselves out of our room with our baby girl inside" The gentleman stayed with Candice while they called someone to open the room and see what else they could do, but I couldn't stay still, it was as if I had drank 10 Redbulls, my hands were shaking as was my voice. So I ran to the visitors center as fast as I could, I ran inside to the front desk where there was a line of people waiting and just went straight to the counter and told whoever was there "My son is missing, he is lost, he walked out of the room this  early morning, I explained everything trying to catch my breath and sound coherent, but I couldn't, they tried to calm me down and a security guard called on his radio. Within seconds, he got a call back and he told me that they had Philippe and that he was fine. They asked me to go to my room and that they would take him there. I thanked them, and I tried to walk back but I was running without even noticing. After 10 minutes, the security vehicle pulled up with Philippe in the back seat covered in a blanket. I tried to hug him, but they didn't let me, they said they had to verify my ID first so I ran back in got my wallet and my phone and showed them pictures and they gave him back to us. He had gotten a messy diaper and his pijamas were dirty that's why they changed his diaper and had him wrapped in a blanket. We thanked them, and as soon as the door closed i dropped to my knees and held him tighter than ever, bawling. I couldn't stop sying to him, I'm sorry Philippe, I'm sorry! I'm sorry buddy, I should've been watching you and checking on you, I'm sorry!, Candice was crying too. Philippe was just happy to be with us and eager to eat some breakfast. While we were waiting, the security guard told Candice that a guest had found him in the fourth floor of our building and had called them. Then only words that they could get out of him was "mama" and "dada".  I felt and still do like such a bad parent for choosing to fall asleep instead of being aware. But more than anything else I am grateful, I'm grateful that today I got to tuck my little boy in bed and kiss him goodnight. So many thoughts crossed our mind while he was missing, and I simply don't know... I just don't even want to think about it if we didn't have him with us and were still looking. 

I love you buddy! and I'm sorry.

Orlando

Since Philippe was a baby he had a love for Mickey Mouse and enjoyed watching Mickey Mouse Clubhouse. We would play it for him and he would smile so big, laugh and giggle. I don't know what it is about it, the colors, the sounds of their voices, or their faces, but there is no other cartoon show that will get his attention as much as Mickey Mouse does. Even now, if he is downstairs playing with his toys or sitting on the couch, or looking out the window and he hears the theme song play, he will come up as fast as he can and run into our room with the biggest smile! Then he will sit on his Mickey Mouse chair that his abuelos (grandma and grandpa) got him and enjoy the show. The funniest thing is that Belle, our baby girl, shares the same love for Mickey. They're both so cute watching it with their jaws dropping as Mickey goes on his adventures.

Anyways, because of this we had been wanting to take him to Orlando so that he would see Mickey and all the magic that you can experience in all of the theme parks, but well... we didn't have enough money and we all know how much that kind of vacation can be. So we heard about Make-A-Wish and all the things they do for kids, I learned that the boy/girl doesn't necesarily need to have a terminal illness but that if he has a disability that he will carry on for life, they will grant their wishes too. So I didn't think about it twice and signed him up. A few weeks later, we got a phone call and we filled some papers, and sent them out. We waited and waited and one day we got some bad news. Unfortunately Philippe didn't qualify because he wasn't able to communicate "his wish". You see, the child has to be able to say it in some way that that's what he would like to do, and well, Philippe doesn't talk and one of his disadvantages or areas where he needs a lot of progress is communication. This was a little sad, but it didn't last long.


Marcel's family decided that it was time to go again and visit Orlando for a fun vacation with all the family and obviously with all the kids. We can't thank them enough for the opportunity they gave us to take Philippe and Belle to see all the parks and spend time with our kids. We loved our vacation so much! Philippe got a kiss from Snow White on the very first day, rode Aladdin's magic carpets, the Pirates of The Caribbean, carrousels, and got to see Mickey Mouse Clubhouse LIVE! He even rode a small roller-coaster, which he wasn't very fond of, but didn't cry at all. Belle couldn't get her eyes off all the characters whenever they showed up for pictures she was amazed and her mouth dropped at the fireworks and the music. I wish she will be able to remember all of these fun times. Her cousin Emilie is in love with her and was so sweet to buy her a t-shirt and some headbands out of her own pocket! Etienne and Eugene, shared their toys with Philippe every day and played with him too.

Once again, we are so thankful for this trip and for the moments we spent with our family, for the illusion and innocence reflected in our little one's face. Thank you abuelos for this unforgettable vacation. We love you!

Belle and Marcel in the Dr. Seuss Carrousel

Harry Potter World

We got turned into minions! SO FLUFFY!!!

Phineas and Ferb

Philippe being a ladies man... and a little shy too

My dad being silly, he loves hats!

Chip and Dale

Emilie and Marcel being silly.

Orlando LDS Temple, where we got married.

Animal Kingdom

Handy Manny

Belle sporting her spring wear in the nice Orlando weather.

Look at that happy boy!

Philippe, Eugene, and Belle, watching Mickey Mouse Clubhouse at the Resort

Belle decided she is going to be a princess for life.

All I Want For Christmas

We are on vacation in Holland

Several people have been asking for an update for a while now. The reason why there hasn't been one is because basically nothing has changed. We had a phone conference with Dr. Lacchwani on October 10th; Philippe's best option is surgery to remove the malformation, which is over 1/3 of his brain. 

Beyond the obvious hurdle- that brain surgery is a VERY scary thing for any parent to think about, another down-side is that they would have to cut into the motor strip in Philippe's brain, which would make the left side of his body noticeably weaker for the rest of his life: he will most likely not have fine motor function in his hand, and walk with a limp. Despite all that, it's his best shot at life: to learn and understand things, to communicate, to do all the things life has to offer. Most likely, we will do the brain surgery, but right now we just can't make that choice... yet, anyway. 

For now, we are going to enjoy the holidays and pretend like everything is fine. At the end of the year, we'll make our decision. 

Recently a friend gave me a famous piece of literature that I'd like to share:

"Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
 

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Emily Perl Kingsley  1987"

Maybe, someday, we'll make it to Italy. We've even been offered a ticket that might get us there: brain surgery. But right now, we are on vacation. So here we sit, enjoying Holland.

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!