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stephaniemvazquez stephaniemvazquez

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Stephanie Vazquez  Our life in tiny squares. Mostly pictures of my warrior son, Noah. 🖤 Please follow his journey and help spread awareness. #sturgewebersyndrome

https://m.facebook.com/noahthewarrior/

Passing the time by colouring with grandma while at the hospital for almost four hours today. The opthalmology department is always behind schedule and a trip there is usually a half day affair. It’s gotten easier as he’s gotten older because he busies himself and plays but it was bad in the early days. And thankfully he doesn’t scream bloody murder whenever we first walk through the doors like when we go to daycare surgery. 😢But letting them actually look at his eyes is another story. Normally when he’s sedated while getting a laser treatment is the only time they can do an eye exam. Today he was seen by three different doctors - to check his vision, to check the pressure in his eyes and to see the back of his eye to determine if surgery is an option or not. The good news is that his vision is really good. And he let not one, not two, but three different doctors check his eyes. The bad news is that the pressure in his left eye, where his vision is so good, is high, not dangerously high, but high. However he has something sponge like at the back of his eye making the surgery risky for vision loss later. So ... each come with pros and cons. For now the decision is to wait and try and continue to monitor the pressure with drops. Hope and pray a little too. This guy continues to amaze us with everything he has been through and continues to endure. He takes it all like a champ. He’s so funny and makes everyone laugh and looks so damn cute in those specs. 🖤
#noahsjourney #teamnoah #sturgewebersyndrome #opthalmology #bcchildrenshospital #specs #brave #fighter

Happy Valentine’s Day from this cheeky monkey. 💕 #valentinesday #happyvalentinesday #cheeks #cheekymonkey #pink #heart #love

Noah had such a fun time at Mia’s Moana themed 5th birthday. Quick nap then we head to party number two! #happybirthdaymia #5thbirthday #birthdayparties #happybirthday #moana

He makes my heart happy. ♥️ #beach #chillywalk #sundayfunday #camerashy

I can’t even believe how good he was for the final fitting for his glasses. And how friggin adorable does he look. That Jerry Maguire kids got nothing on you. (More in stories). 😍😍😍 #noahsjourney #teamnoah #glasses @mccaincanada wanna do an updated commercial? 😏 @whitespot_restaurants

Thinking about when we got these pictures taken - almost exactly one year ago - knowing that surgery day was almost upon us, I wanted some memories of those moments because if I could have stopped time I would have. I remember stumbling across this amazing photographer via Facebook who dropped everything and came to our home. Later we stood on my front porch and I thanked her for the gift she had given us. And we were both in tears as I shared some of Noah’s story, our story with her.
I remember receiving these Be Brave shirts from another mama in California who had been following Noah’s journey. From afar she saw strength in me, in us. Somehow I did feel a sense of strength in that moment, wearing those shirts with the two words that had so much meaning, in our new home, with my family.
Afterwards I went through the motions as we had more appointments, another MRI and a final meeting with the neurologist and neurosurgeon. Over the weekend I tried not to think of what was coming and to enjoy what we had then, and be present. But whenever I let my thoughts wander I would be overcome with so much grief and pain that I thought there was no way we could go ahead. Then something happened. For reasons that I’ll never know, Noah got sick that weekend. And the decision to postpone surgery was made for us as he couldn’t have surgery if he wasn’t 100% healthy.

The following weeks went by in a blur. I was scared that we were just postponing the inevitable. We had another big scare roughly six months later where we spent another week in hospital. It made me wonder again where we would have been if we had gone ahead with surgery in January.
I’ve had many regrets in my life. But this is not one of them. I know what happened happened for a reason. I know that we are not out of the woods - we never will be - and I know that I can’t live in fear of what may come tomorrow. Sturge-Weber Syndrome is progressive. No two cases are alike. It can come on when you least expect it. And it may get worse over time.
More in comments 👇🏻

It’s hard to believe that at the end of this month it will be one year since Noah DIDN’T have brain surgery. So much has happened this year and we haven’t looked back. We don’t know what the future holds and what other difficult decisions we will have to make but we continue to take each day as it comes. Each day is a new day. Each day he does new things. And each day he makes us laugh (and cry!) harder than the last. 💕

This picture is from a photo shoot we did last summer with @jaxandlennonco shot by the amazing @idlewildphotoco and it just so happens that today their warehouse sale went live online. I scooped up some more goodies (since he doesn’t have enough already 🙄) because winter will end eventually right? As always Erin, the way you capture this guy is perfection.
#noahsjourney #teamnoah #sturgewebersyndrome #sturgeweberawareness #hemispherectomy #warrior
#jaxandlennonco

Well, this is disgusting. I’m appalled that people think that speaking like this is okay. Parent of a medically challenged child or not, it is NOT okay to ever speak like this. Funny? Maybe this comedian @seguratom should spend a little more time on his jokes than spewing hateful words. And if anyone says this is freedom of speech, well then please kindly eff off. @netflix #Regram @tamarataggart #takeitdown #netflix #tomsegura

My bright eyed little love with cake all over his face when he turned TWO last year at his construction themed birthday party 🚧🔨. I thought turning two was a big deal then but now he’s THREE. This last year just flew by. One thing has remained the same - he loves cake now just as much as then. #notthrowbackthursday #memorymondays #twoyearsold #noah #cakeface #birthdayboy

I must have done something right to get him. 💙 #luckyme #thatsmile #thisisthree #cheese

Happy birthday champ. Still can’t believe you’re three. Thanks @sepid143 for the video. ♥️ #happybirthday #noahturns3 #birthdayboy #birthdaycake #pawpatrol #threeyearsold #friends #family

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