Why haven't you blogged??!!

I know I've been MIA on my posts but I just haven't been in the mood lately. I have so so many amazing people who have been as understanding of how different our lives are as they can be (understanding that they can not possibly understand at all) but believe it or not I've also faced a lot of criticism. There are some out there who think I'm over protective, that my kids look "relatively healthy" so I must be keeping them away for personal reasons, or that based on the beautiful pictures I post on Facebook that our lives must be all rainbows and puppy dogs. Thank G-d my boys are growing and developing into the amazing little men that they are. However, we still have so many obstacles and difficulties every day that I can not continue to reiterate to those who clearly will never get it. My priority is the boys, their health, when the opportunity is right socializing them with other children their age, surrounding myself with people that make me laugh and have been my support system since day one and family...true unconditional love kind of family who have always offered help and never asked anything in return.

I am so over being judged for being an over-protective parent. I may put an image out there that makes it seem in pictures like my kids are just like any other child, but the facts are that they are not. They are different and require more delicacy and sensitivity in every way. Brody breathes through a hole in his neck and if that apparatus fell out he would have no means of continuing to breathe. He can not speak and communicate with his mommy and daddy like other children his age. He has to stop his play when he needs to be suctioned and have a catheter shoved down his trachea and have his saliva vacuum sucked out for him. Cameron's sensory issues require him to receive input every 2 hours, he can barely look or touch food let alone eat it. He can not stray from his schedule or he becomes more difficult to manage than usual. It takes 2 hours of kicking and tossing for him to get to sleep then he wakes several times during the night. Brett and I each sleep with a child in separate beds every night. We NEVER get to sleep in the same bed. No pity party here but I just think that all of these things tend to fade into the background when the kids accomplishments and cuteness are in the forefront.

I have become paranoid about posting outings and proud moments of the kids because soon after I get someone calling, writing, whatever about being offended that they haven't met them or been in our lives. From the start I have asked for patience. I knew that there would be people who get it and those who don't. Unfortunately the ones who don't wont take this journey with us to that point where we can finally parade the kids in celebration.

To the many many many of you who have been supportive, patient and selfless-you are wonderful friends/family and we truly can not have gotten through all of this without you. And to those few who have made me so self conscious about using this blog as an outlet or caused controversy that has infused any negativity...try to imagine walking a mile in our shoes or anyone who may be undergoing any unusual challenges in life.

Ok I'm stepping down from my podium now that I've aired it out and will catch up on pics and commentary I held back on posting.

Lots and lots of love and thanks.
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December 2012

Hanukkah was a blast but not so different from the every day life of Brody and Cameron getting showered with presents. When you're a preemie this tends to be a norm... Tough beginnings=LOTS of presents. So then to accomdate all of the toys the entire house needs to be repurposed and wardrobes built specifically to house "kid stuff". Invasion of the twins!

Reading together and listening to moms horrible singing voice that only a son could love


New tvs in the car


Only way to keep them happy in the mom-mobile



I've been sleeping with Cameron most of his life due to his sensory issues keeping him up or waking most of the night but now Brody is on to us. It appears as if he is now Brett's permanent roommate.

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No O2!!!

Since Brody tried to climb out of his crib


I decided it was time once again to trial him off the oxygen for sleep. I didn't expect anything spectacular as this has been a fail in past attempts. Well, 2 nights in a row he held great blood oxygen saturations on room air alone!!! Freakin fabulously amazing Brody! I couldn't be happier that we can kiss goodbye yet another medical need.

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Ouchies

The hospital stay was no fun at all but Cam was able to go home on Thanksgiving and once he got home he had a great night... We quickly learned this was just a honeymoon. He has not slept since! He has been up screaming in pain in his ears (to be expected with this surgery) since and has been taking enough to stay hydrated but has lost so much weight that he didnt have to lose in the first place. I am beyond sleep deprived and have had no time to spend with Brody and feel awful about it. They are finally getting us oxycodone suppositories for Cam so I'm hoping that will help break the cycle. It could take up to 14 days for all of these agonizing symptoms to go away... It's going to be a brutal 2 weeks.


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Don't hold your breath

I'm in ICU cause when I'm mad or in pain I like to hold my breath til I turn blue. I feel pretty crappy but did good during my surgery.


Am I the saddest thing u ever did see? They won't let me go home until I drink and I refuse to so looks like we're spending turkey day at CHOP. I need lots of presents to cheer me up people!


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Location:S 34th St,Philadelphia,United States

Worry worry worry

So Cameron's surgery is tomorrow and as if I couldn't be upset enough about leaving Brody with the nurses for a few days, now Brody's sick again!

Wishing I could be in two places at once... Twins! Worry worry worry!


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My best friend is engaged!

After a lot of reworking 24 hour nursing coverage for Brody I was so fortunate to be able to surprise Christine at Seneca Lake, NY where her boyfriend proposed to her! It felt so good to be there for my friend who has been so supportive on my endeavors as well as challenges. We all had so much fun and I have never seen her happier.

Lots of love Tine and Brett!



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Potty time ?!

Looks like the big boy potty is a bigger hit than the little guy ones I have all over the house... Fine by me! Tomorrow we try it sans pants!


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Reminders of just how fortunate we are

Cameron saw his retinologist today- the man who called the whistle and sent us to Michigan in hopes of salvaging whatever was left of his vision. The sight of Cameron brought tears to his eyes. He never imagined when he met this baby 2 years ago in the condition he was in that one day this beautiful, strong, SIGHTED child would walk in his office. Cam is doing so much more visually than anyone ever expected! His eyes are one of the true miracle stories of our Two Tough Twins and we are amazed by his capabilities in this area every day. Dr Kaiser is responsible for saving this child's vision. We are forever grateful to him

Everyone is ok!

Hello loyal Cambrodia fans... I'm so sorry that I have fallen behind on my blogging responsibilities! I will explain in a later entry what has been going through this head of mine which lead me to take a break from sharing.

I didn't want you all to worry. The kids are doing well. A few weeks ago Cameron's general surgery team was concerned about his weight and had us logging his intake and there was a threat of a gtube. Good news is he gained more than what they wanted since then and he is now off the radar on that front. He is however having his tonsils and adenoids removed on Tuesday. Thanksgiving will be at CHOP for half of us and home with Brody for the others. Cam is expected to be there 3-4 days as this is a more serious surgery considering his young age and other issues. It may sound like a simple t&a but this is his airway.

Brody's bronch has been rescheduled for January 2. Hoping for some good news for the new year...

I promise more details to come but I'm just so wiped out exhausted.

I'll do my best to write after his surgery.


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Shitty ass day

Don't feel like writing much but wanted to let you all know that if It seems like I'm avoiding you, I probably am. Cameron's doctor was very unhappy with his weight and refusal to eat today so he was put on an appetite stimulant. If he doesn't start gaining weight we will have to talk about more drastic measures. I'm completely devastated and not ready to turn that frown upside down yet. At least we got through their birthday party before this shitty news arrived. When I'm feeling myself again I will post pics and stories from the party.


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Punkin patch and meltdowns

We were so lucky to get such gorgeous family pictures amidst rain and a complete meltdown from Cameron. Sensory overload can strike at anytime! Thanks aunt Kim for the awesome shots


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At least the pneumonia waited until after their birthday!

Brody has pneumonia! Fortunately I am a whiz with a ventillator and his pulmonologist trusts us to care for him at home for now. So we will watch him very closely this weekend and put him back on the vent at night and antibiotics to try to keep him out of the hospital. Cold and flu season has shown its face early on for us this year!


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Big boys 2nd birthday!

Zoo!




2!!! We made it and we're whooping prematurity's ass!




A bit more timid with the fire...






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More vids

Giggle gaggle!

Useless but super cute tricks

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Videos

Night of the first sounds we have heard out of Cameron in a loopn time. Beautiful sounds!

We use these special therapy brushes to desensitize the mouth but need to use something he likes to get him to do it. His favorite things are Greek yogurt and hummus. What a weird kid.

Omg I'm hysterical-Christine is now calling Brody Zohan because he brushes his teeth with hummus! Lol

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What a difference kids make

Today I had a breast ultrasound to check out some lumps. I didn't think I was overly concerned going into it but my first eerie feeling happened when I got there and realized the last time I was at that location was when we found out we were having twins. What a polar opposite end of the spectrum to now be there to check out my lumpy boobs. Once they did the ultrasound and left the room to talk to the radiologist my mind went racing. Why was it taking so long?! I started crying and called my mom in a panic. What would happen to the boys?! I was reminded of how lucky I am when they FINALLY came in to tell me it was just dense glandular tissue but wow did my imagination get the best of me. When I had this done before kids I wasn't quite so scared or upset but those little goobers mean the world to me and the chance of me not being healthy enough to care for them or watch the amazing things they are going to do with their lives was paralyzing in that moment. I am so grateful for my health and to be fortunate enough to be well enough to give them everything I have every day.

A little shout out to my mom's friend Rachel who is my age with a 2.5 year old and just diagnosed with breast cancer. I think about you EVERY day.


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The best sound ever

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He speaks!

I have waited and worked so very very hard to help Cameron to meet this very important milestone. He's finally talking! This was one of the best days of life ! I could not be more proud, shocked, fortunate... I was so scared this day might not come. Again, when you have a preemie developmental delays instill a fear of 'what does this mean for his future???' What a sweet beautiful voice and smile that comes along with it!!!

While I was crying tears of joy for Cameron I actually found myself sobbing simultaneously in pain for Brody. I have never mourned for Brody's development delays because he is so right on point except for the things that are medically caused by the presence of his Trach. This time I could see the confusion on his face at the sound of Cameron's voice like 'why can't I do that?!' he was mouthing and trying so hard to mimic Cameron to produce voice. It was heart breaking. My poor Brody just had his first realization that he was different. He will have his day too...Today we are allowed to celebrate Cameron accomplishments.


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Adult outtings

As hard as it is to leave my guys emotionally, medically, and logistically once we are finally out it is freeing. We had my close friend Jess's wedding this weekend down the shore. Brett told me that night I was the person he fell in love with 6 years ago... I'd have to agree that I have not been that person in a very long time. We were able to kick back, have some drinks, and dance and laugh with good friends. It felt great and it was a great reminder that we still need to do for us.

Awesome wedding Jess and Matt. Xoxo





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Cameron's dream come true

Cameron's love of trains realized with a real life old fashioned choochy ride!

Perfect timing for a nap


Brody is happy as long as he has food


He really likes food

Erica's wedding

I had the honor of bein a bridesmaid in my beautiful cousins wedding a few weekends ago... It was a blast! Love you Erica and Andy







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Why no updates recently

I've heard from a lot of you that you have been looking for updates and have been surprised I haven't written in so long. Not to worry, everything is fine over here I think we're just finally becoming accustomed to this as normal life and no longer trying to rush through it unaffected or wish for it to be something it's not. The fact is that the boys are healthy... The rest is clearly very important but we are living in the moment now and not in the ideal tomorrow anymore. We learned that we were setting ourselves up for disappointments and heartbreak having those kinds of expectations. We recently learned that Brody's airway is still inflamed and that his next look in the OR has been put off until November...meaning he will be unable to communicate verbally for ??? Signing will become his foundations of language and our primary method for our son to communicate with us... Then the added challenge of teaching Cameron so that he too can understand when Brody signs. The Trach is there for an unpredictable amount of time and so too is the medical equipment, suctioning and nurses.
Cameron is doing very well with his sensory therapy and has really come a long way since we started. Feedings and sleep are still a very long way from being what they should but we'll take the progress we've made as an example of what is still to come on other areas.
1 month away from 2 years chronologic and I have two beautiful, funny, loving little boys to celebrate. We are so fortunate to have amazing kids that inspire us to be better parents and people everyday.
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The signing begins... Finally!




Brodys mew sidekick (borrowed)

My little barista


Big step to sensory therapy... Touching and playing in food... One day we might actually eat it too!

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Ta-da!

Mad vision skillzzz



Brodys new leather coat for the fall



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Poor Kito

Old dogs do not want to be tortured by babies







And his response on my deck!



Just like dad


Oh no... Just like dad too!


One gorgeous spaghetti face


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Gettin diirty!

Our first trip to Tyler Park... Brody taking a dip in the Neshaminy Creek





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Cam kissing the dogs butt

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