A day of THANKS

On a day like today, it's hard to not be surrounded by everyone we love. It's not that we didn't get invited anywhere, surprisingly we did. I say "surprisingly" because after so many times of turning down invitations, we would understand if they stopped altogether.  The truth is, we realized a few years ago we have to be realistic, which means that we spend nearly every holiday at home alone with our little family.
I'm thankful that when both of our kids were throwing tantrums all morning (beginning somewhere around 2 or 3am when Philippe first woke up), we just rolled with the punches, like we do nearly every day. When the food was ready, half of which we bought from the store and half we made at home, we just sat down to eat without looking at the clock to adhere to a schedule or sitting around salivating while we waited for late-comers to arrive. We didn't completely stuff our faces because we bought all the food ourself and it will simply sit in our fridge until it's gone, providing no pressure to eat until we feel ill. Throughout the meal while Belle was refusing to eat nearly everything except turkey and jello salad, it didn't matter. And when she was fussy and wanted a nap, I put her down in her own bed where she promptly giggled then curled up to her favorite blanket.
The part I felt most grateful for today was at the end of the meal when Philippe dumped his glass and got it all over his head, the floor, and the table, and Marcel and I just laughed. We didn't have to feel ashamed or embarrassed, or offer a lengthy explanation of why our son "is the way he is" or "doesn't understand". When we finished eating, we put the food away and cleaned up together almost silently, husband and wife working side by side toward a goal to put our house back in order- or as close as it can be with our 2 sweet, unpredictable, wonderfully chaotic children.

To all our relatives, friends, neighbors, and loved ones near and far, we are truly grateful for you! We are thankful for your love, your support, and especially your concern and understanding. We love you all! HAPPY THANKSGIVING!!!

CELEBRATE!

Philippe has been seizure-free for 1 months! (He used to have 1-3 a week.) How fitting to celebrate this special occasion today. July 24th is the holiday in Utah we celebrate Pioneer Day. In 1847 after 17 months of travel Brigham Young lead 148 pioneers into the Salt Lake City Valley. After their long journey, even though the traveling had finished, their work of establishing an entire functioning community in the middle of a desert had just begun! And so it is with us. 

Now that we know and understand WHY Philippe has had seizures, along with his many other health issues, and HOW to heal him, we have reached the end of our journey searching for answers. Yet, at this point, when we look to our immediate future, some days the work ahead of us seems impossible. The length of time required on the GAPS diet to completely heal the body and reverse all the damage caused by gut dysbiosis is usually 2 years. I have a feeling it may take even a little longer for our son, but it will be worth it! Just as Salt Lake is now a major city in the US and even the world, I know Philippe's future will be filled with greatness, wonder, joy, life, and health!

The BEST part about it all is the feeling of FREEDOM, and in a sense POWER, we now have. We are no longer slaves to Philippe's seizures, medications, tantrums, or inability. I used to feel so helpless and terrified every time Philippe fell asleep because I knew every time he woke up there was always the agonizing possibility I would have to endure watching my son's little body seize uncontrolled for 18-20 minutes. I would have to give him a "rescue medication" then sit by his side or hold his stiff shaking body in my arms, and pray, and cry, and sing or talk softly to try to give him a little peace and comfort, even though I knew during a seizure he mostly likely wouldn't be able to hear me at all. 

The anguish, doubt, fear, hopelessness, and all the unknowns we felt for Philippe's life and his future have been replaced with hope, dedication, and excitement! He WILL be healthy! He WILL learn, grow, talk, and keep progressing every day!

Today in therapy he was really focusing and paying attention. He's getting good and figuring out how to learn. I know the wheels in his brain are turning and he's understanding more and more and getting better and healthier every day!

Philippe the GREAT!

WOW!! Today has been an amazing day!

This post has been a long time coming (months!), but I've held off for a few reasons. Now, finally, I feel 100% ok to share everything with the world, which is a BIG deal. Of course I wish I really did have time to share everything, but I don't, and not everyone wants to hear the whole hard truth. So if you have questions let me know. I have become so PASSIONATE about health, food, and healing! Yes, I did say "healing"!! Because now with 100% confidence, after searching, medication, doctors, and diets I KNOW you can HEAL or in other words CURE epilepsy, autism, food allergies, skin conditions, digestive problems (diarrhea/constipation) and so many other diseases and "conditions" we have in our fast-paced world today.  Don't worry, I'm not trying to sell anything, and no one is paying me to write this. I'm just so ecstatic that I have to share our story! Hopefully it can help at least 1 person or 1 family on their journey to health. We are not completely there yet, but we are sure on our way!!!

"Nobody changes until the pain of staying the same is greater than the pain of change."

Last year at this time we were nearly hopeless and didn't know what to do. Philippe had been having seizures for 2 1/2 years, he was in the less-than-1 (because apparently there is no "zero") percentile in nearly all areas of development. He seemed very absent and dazed, like he was never really "with us". He didn't sleep well, he threw tantrums several times daily, and even though he was allergic to eggs, nuts, and soy, he was completely OBSESSED with food: it dictated his entire life! It was almost like he was a drunk or an addict! He had diarrhea as well as terrible eczema and a-topic dermatitis his entire life (basically he had extremely sensitive skin and always had rashes, red and white splotchy itchy patches all over his body). 

We went to the Cleveland Clinic to get their suggestion on what to do. They officially diagnosed Philippe with Autism, which threw another thing on our already-overflowing plate. It wasn't until a few months later in October 2012 that they called to tell us their suggestion and said, I quote "Philippe's best chance at life would be to do surgery to remove 1/3 of his brain". Then after that they would keep him on daily medication and keep monitoring his EEG's for a minimum of 6 years. In the mean time if the surgery didn't change his seizures at all, or at least significantly, they would then do a follow-up surgery to remove the rest of that half of his brain. Then at that point if his seizures hadn't changed at all, there would be nothing else they could do, except try different medications until hopefully something helped. The upside is there was a chance Philippe's seizures might decrease or even stop altogether. The downside is there was a 100% guarantee he would literally have less of his brain! Which means half of his body would be weak, along with a whole slew of other issues for the rest of his life. 

We did NOT take this decision lightly!!! After a lot of talking, struggling, and praying at first we decided just to wait and do nothing until after the holidays. 

Well in December after MANY hospital visits (at least weekly, and a few times we were there nearly every day!) I complained on Facebook that my kids were getting sick ALL the time! A dear friend of mine asked if we had considered giving him Cod Liver Oil. Of course my reaction was "Ummm...  give him what??" But as I continued to ask her questions and look into it, I found out she was talking about The Gaps Protocol, which consists of Diet, regular detoxifying (or "cleansing" if you prefer), and chemical/toxin-free living. As a bonus, the founder Dr. Natasha Campbell-McBride is a Neurologist who was a Neurosurgeon for years (she has physically seen and operated on the human brain people!) but now she actually suggests NOT using surgery or medication as a means to control (they dont cure!) Epilepsy and Autism because when she become a mother her son had severe autism. So she went back to school and got another post-graduate degree in Human Nutrition and used the diet to cure her son (who is completely typically developing today! No sign he ever had health problems!!)

I became obsessed, and immersed myself every day into figuring this out... I read This Post, http://www.keeperofthehome.org/2010/02/the-gaps-diet-what-it-is-and-why-you-might-consider-doing-it.html and not to sound dramatic, but it changed my life! 

It lead me to many more blogs, articles, and books about "Real Food". We started the diet, and for 13 days Philippe didn't have a single seizure! (His average was 1-3 per week, so zero in 13 days was excellent!)... Until we "cheated" on Christmas, and Philippe had a seizure when he woke up the next morning. But I wasn't defeated yet. We resumed the diet, and again no seizures... Until we "cheated" again on New Years Eve, and again the next morning Philippe had a seizure when he woke up. From Jan 1-12 we were in Orlando on a special vacation so Philippe could meet Mickey Mouse, his favorite thing in the whole world! We didn't do the diet on vacation, and Philippe had 3 seizures in 12 days. We resumed the diet the day we got home, and Philippe had no seizures for 3 weeks, until we again "cheated" one day, and again he had a seizure the next morning... Are you sensing a pattern here?? Maybe every single time it was a 'coincidence'... Or maybe there's actually something to it?

"INSANITY is doing the same thing over and over again, but expecting a different outcome"

So over the past 7 months I've been trying to figure out the diet, and change our lifestyle to a more healthy toxin-free way of living. It has NOT been easy. I haven't done everything right because I either didn't fully know or understand the diet and lifestyle, or because I was having a frustrated/stressful moment of defeat where it was easier to opt for a less-healthy yet more convenient option at the time. 

I finally feel like I know what and how to do the GAPS protocol! I know how to make bone broth and meat stock, homemade yogurt, fermented veggies, and so on. So starting July 1 I decided to start over from stage 1 (only whole organic chicken and homemade broth all day every day), and boy the changes in Philippe have been dramatic and FANTASTIC!!! And we are not the only ones noticing!

We were just at a checkup for Philippe today and it could not have gone any better! Our pediatrician has been seeing Philippe for just under 2 years now. He's fully aware of his situation and his progress, or what used to be a lack there of. I am not joking or exaggerating when I say it was the norm for us to go see him at least weekly! But the past few months oh how that has changed! 

We hadn't been for a few months (I think since April maybe?) until today. During the exam our doctor said "Hey his skin is completely clear! He doesn't have eczema. That's amazing!" I told him he doesn't have diarrhea anymore, and he said "That's awesome!" I also told him "And he can eat eggs just fine now too, he's not allergic at all anymore" to which he replied "Are you serious?!! That's amazing!! Remind me the name of what you're doing again?!" I told him it's the GAPS diet. I also told him Philippe can say 1 word now: "yeah"! He said "I just realized he hasn't thrown a single tantrum the whole time you've been here. He even let me examine him and didn't scream, cry, freak out, or try to bite at all. He didn't love it, but he tolerated it. He totally let me look in his ears and eyes. This is SO amazing. He's not even on any medication now. I can't believe it." But my favorite comment was at the very end he said "Candice, I really can't even believe this. I've seen a LOT of kids, and any other kid it literally takes 10 years to see this kind of progress. I am Floored! And beyond impressed! Just keep doing what you're doing. And let me know if there is anything I can do to help."

As a bonus here is a small video from therapy today. Today was the very FIRST day Joe set the egg or the bus on the table and asked him to give them to him. Philippe totally figured it out right away!! AND he also figured out the difference between the egg and the bus, and which one to hand to him! If you don't know Philippe very well I cannot begin to explain to you in words how AMAZING and COMPLETELY FANTASTIC this is!!!!! It is a miracle! 

I LOVE my son SO much! I'm so grateful to be him mom! I also can't even begin to express my gratitude to Rachel for introducing me to our new life-changing diet and real pathway to health and healing! It is the BEST feeling in the world to watch Philippe change and learn right before my eyes! Our future is now looking so bright, filled with promise and hope.

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.