Calendar of upcoming events

Just when we started to go out and have some fun... Back to the hospital thing we do so well

Tonight-sleep study overnight at St Chris

Tues-Brody OR for another bronch

June 11-?? Cams stomach surgery

TBD Brody's reconstruction


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I'm sexy and I know it!

He finally realized that sunglasses help him! And looks so cute in them


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Memorial Day 2012 tour

No one stayed still long enough all day to get a better picture than this but hanging out with our cousin Julia was awesome!




A few criers but Brody is all smiles for his first time ever in a pool! That was a teary eyed moment!




Wow babies really have a hard time taking decent group shots...






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I think it's the holiday weekend that's getting to me. Watching everyone else pack up and whisk their kids to the shore doesn't get easier... Probably harder as the boys get older and we still can't do that. Just feeling a little down.



Pic of Brody wandering the halls of CHOP naked yesterday as we bounced through bloodwork, echo, EKG and cardiology. Great news is he never has to see cardiology again! His ticker is in good shape and one more thing checked off the list to qualify him for reconstruction.


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Funny kid

The perks of having a Trach... Can't suffocate yourself in your blanky




Obsessed with playing with my hair and throwing it around. My little stylist




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I used to be cool... Really!

I now have become that lady running through target with over 100 packages of baby food in her cart eating as I speed through the store and checking out at the cashier with empty wrappers. Hot.


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Brody's cuteness

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Cameron's surgery

Cameron will be having a surgery called a Toupet Fundoplication on June 11 to wrap his stomach around his esophagus enough to relieve him of his reflux and the other problems it is causing him.
This is a drastic measure that we are of course scared to do but it's time this baby gets some relief. He has been in pain his whole life around the clock and it has caused major feeding/sleeping/breathing problems and has started to really affect his personality. We don't want to be the parents who live in fear just waiting around and hoping it gets better while our son is writhing and screaming in pain every day. His surgeon explained some problems with his anatomy that no one else has seen (due to prematurity) that he can fix with a newer technique procedure than what Brody had when he had his GI surgery so recovery should not be the nightmare that Brody's was last January. We are happy to be taking action as we have done everything else in the world to try to tackle this from a non surgical route but now it's time. He could be in the ICU from 2 days to a week and have very little in the way of nursing coverage for Brody while I am with Cam so logistics will be very tricky but we will figure it out like we always do...
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Another trip to the OR

Today was our second opinion appt from another doctor in the airway clinic so now he will want to see Brody's airway first hand and will need another bronchoscopy. We are scheduling this with Pulmonology in order to get one more diagnostic on his pulmonary function and his lung'sability to withstand this surgery. He will see cardiology next week for a several hour work up to clear his heart as well... Still going to be quite a process until we even get to his reconstruction but we're exploring every avenue to ensure this thing eventually comes out.

Cams general surgery appointment is Wednesday to determine if he will be having surgery to tighten the esophageal sphincter by wrapping his stomach. Busy few weeks coming up.


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Presents and love

Brett had my necklace designed... With the boys initials. My favorite piece of jewelry ever.. Well maybe up there with my engagement ring but pretty close. I think we have branded ourselves to Brody and Cameron.
Love love love them sooo very much.
Big week of some scary doctor's appointments ahead. Things I don't want to face but what we need to take the next big steps of progress. Trachea reconstruction meeting for Brody and reflux surgery meeting for Cameron. It's sucks so so bad to have to have these conversations but we will do everything on this earth to get them out of pain, speaking, breathing and eating right. Whatever it takes.
Oh and lots of love to all of my new and old mommy friends- I didn't get to reach out to everyone today as I have two little monsters ripping me from limb to limb every waking minute in competition for my attention but I love and respect you all so much. Regardless of each individual situation being a mom is really hard! Wow!




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Mothers Day

So I get really weird on holidays and in particular my birthday and now Mothers Day. My first Mothers Day as a mom I was barely pregnant with the boys and at the Susan G Komen walk which is a tradition for my family since my mom had been sick years ago. I just thought the following year I would be there with a double stroller with the kids wearing cute onesies that said something like "love the ta-tas". Instead Brody was getting trached and I was feeling sorry for my kids and myself- not the way I should have been spending my first mothers day. I wanted today to be easy so I made no plans and just figured a special day for us is one when we have time to just the four of us... That NEVER happens. For once I don't want onlookers or anyone to entertain. It wound up being a great day. I told my nurse not to come until 3p and we decided last minute to take the kids to both grandmoms houses. Those of you with grandchildren might take for granted how easily the little ones can come visit your houses and feel comfortable, have everything that they need and even sleep over often without any issues. Well- this was the first time as a family that Brett and I, Brody and Cameron all made the trip to their homes. Brody always had too much equipment and Cameron was never too comfortable out of his typical environment at home. So I woke up on Brody's floor as usual but today Brett worked extra hard to be a more attentive helper and brought me cards from the kids and we whisked them off to Grammys for breakfast and a romp in their room there that they have never been in in 18 months and then off to Mom-moms for naps and more playtime. We all had a great day ( that is until Brett backed up into a parked car but I'm over that now).

Very long story short it was a good day and while this certainly isn't anyone else's norm I found how to be comfortable in it being mine for the time being.


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My hub is tattoo'd!! Holy crap!

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Still in progress

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Brett's tattoo!!!

Happening right this second!! Ahh!!!







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Catch up

This face kills me! Sans nerdy pjs


I'm too sexy for my shirt!

They really DO love each other!

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New Bonds with old friends

A friend of ours who also has a child with medical issues visited with us for the first time yesterday. We both probably put this meeting off for a while as we felt anxiety about how all of our kids would receive one another and all of the hassle of giving meds, handling treatments, feedings, fussiness during this time. Well we finally did it and I am so happy about it. We never really knew each other intimately before this but we now share a bond like no one else we know. She understands! We share all of the "whys??", fears and concerns of a mother of a child with more unknown than most. We share that need to do everything in our power to fix it all. We share that social anxiety of introducing our children to a world of people who 'dont get it', sometimes including our own family and friends. We share nights of physical sleep but never really getting the mental restfullness required to do this job. We talked a lot but it was more the unspoken that bonds us. We GET each other. She's one strong mama too!
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Congrats!!!

I can't believe I an just now blogging this when it happened last week and it's super exciting.., congrats Aunt Kim and soon to be Uncle Jared!


Brody and Cam can't wait to wear their finest for their first walk down the isle. Cutest ring bear team alive!


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