Pics

Rollin with my homies...or with my mom...NBD



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Vacation

This time last year we didn't know if Brody would make it. We didnt know if we'd be leaving the hospital let alone our house. Last week a dream of ours came true-we went on vacation! So we took a tad bit more equipment and a few more helpers than we had always pictured for our first trip but it was wonderful. The kids loved a new environment, new people and new sights. In one week away from the norm I feel like they really flourished.







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Better than the rest

Most children Cameron and Brody's age look up to their dads but my guys know how extra special theirs is. When he walks in the room no one else matters and the smiles from ear to ear come over them. They idolize their Daddy because he is funny and makes them laugh til they pee their diapers. They don't know it yet but there is more to their Daddy than snuggles and tickles. Their Daddy has stood by their bedsides when most would be too scared. Brody and Cameron's Daddy stayed up sleepless nights researching new techniques, clinics, to heal their ailment du jour. Da-da Collins works very very hard so that Mommy can continue to work so hard at home with her boddlers and give them the special attention they require. Brett is an unconditional, devoted, crazy kind of loving father who may not be the greatest at the laundry or dishes but he is the best dad I have ever come across. Brett deserves so much more credit than he gets. He loves his sons more than anything in this world and will do anything in his power to keep them safe and healthy.

Happy Father's Day to our Daddy Boo-wet!

Love and choo choos,

Cameron and Brody

This time last year we didn't know if he would make it out of his last sickness... And look at us now!!!! Wow Brody- YOU ARE AMAZING CHILD!!!












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Our other brother???

Just getting to post these from our quickie with Sam Freedman... Him and Brody were pretending to be the twins...sorry Cam-you're too possessive of your toys-maybe if you shared better the cool kids would let you play with them...


Did you just touch my toy man??



Mommy he's touching my toy!!



We will hopefully have more play dates with our new buddy soon!


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Super healing super hero

Little man feeling a little bettee




Not too shabby for being cut open just yesterday.




This Kid loves his trains




He's on full feeds again and hopefully going home tomorrow. Super quick and easy recovery sp far. I'm probably just imagining it but he seems so much more comf already... We can only hope...
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Out of surgery

Everything went well and morphine is still dripping so all is quiet on the CHOP front... For now. Cam had the fundoplication to wrap his stomach to prevent him from continuing to reflux. Doc said his esophagus was so short it was almost non-existent... Drawing us to the conclusion that food/acid was coming up and not clearing. He had lesions all over on the outside of his esophagus showing us just how wicked his reflux truly was.

Ethicon friends... Enjoy pics of Cams beautifully Dermabonded incisions



Angel baby... Wish we could get some morphine for home! Sleeping like all those babies I hear about that actually sleep!


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Off to Bubby's we go

Rockin out at bubby's

Looks like they're deep in convo




Looks like we need a piano now...




Hello...hello...hello

Stinkin cute

Cooler sunglass collection than me


Brody loving his new water table- thanks Kim for a sopping wet child

Tough guy with his farmers tan and a beater




Tonight I saw Cameron making a snarly face that I never saw before and went over and sniffed in that area and he was in fact turning his nose to a dog fart. Hysterical!

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So nervous

We had a great weekend with tons of distractions but as I just put Cameron to bed it just hit me what a big surgery this is tomorrow. With all of the hardships he has endured he doesn't have many scars on the outside to show for them... He's my physically unscarred child but tomorrow that changes. The thought of cutting in to him sends chills up my spine. I hope this finally gives him some peace and comfort.


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Junk food junkies

Brody licking chips

Mazel licking chips

Brody chasing Mazel for licking his chips

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Not nice!

After the awesome news this week we woke up to this view of Brett's car this morning... When we saw it last it was parked in a spot but someone thought it was a good idea to plow into it and leave the scene. Sh*t!!!!


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Brody... Another long road

So again we went into a bronch pretty sure we would be getting good news and yet again we were let down big. All of the stars seemed like they were aligning- we had clearance from all specialties they asked us to visit in the last few months-GI, cardiology, and almost 100% in from Pulmonology. I'm so sick and tired of the surgeons starting the conversations with "we were very surprised to find..." new active swelling from an unknown source... No shit you were surprised... Brody has been in the best health, developing by leaps and bounds and has jumped through all the hoops you've asked from us... These weird twists and turns at every corner surprise all of us! Again- just devastated.
So what does this mean??? We wait another 3-4 months to take a look again and hope that this is just a little infection that will pass and not something more chronic that could cause permanent scarring. The earliest reconstruction could happen is late fall but this could also go on for years. I feel so desperate, hopeless, helpless...
So when I woke up the next day after crying myself to sleep again I get into action mode. Having the Trach sucks but the most irritating part of any medical condition is if it affects quality of life or development of a young child. Many of my issues are exactly that- my issues-my anxiety about social situations, my sensitivities about people's looks, and all of our responsibility I learn and teach sign language so that Brody has a valid mode of communication.
So, today is a new day and tomorrow will be another.
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Sleep study success!

We have to wait for the detailed reading but seems like things went great last night! Brody's CO2 levels were NORMAL for the first time in his life!!! He still needs to wear oxygen when he sleeps but this shouldnt permit him from having his reconstruction.

I have never left St Chris happy and optimistic... When we walked out the door and the sun was shining even that neighborhood looked beautiful! OR on Tuesday will give us the final word on a surgery date.. We're hoping soon!

The man blowing raspberries

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