Wednesday, July 25, 2012

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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Monday, July 23, 2012

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

YouTube Video

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Friday, July 20, 2012

I'm molting!

Cameron had his first professional haircut today from my fav Jessieann. I was pretty nervous going into it that might make this really difficult and I woul wind upset by the end but I was pleasantly surprised... Blown away actually!
What a surreal experience to see him in a salon with all of the noises and lights and things that could cause major sensory overload but he was unaffected. Jess said he did better than 90% of other kids she has cut. Today was one of those reminder days of how good it can be.
Before




During




After!!!






Love : )







A new man!



What a transformation


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Thursday, July 19, 2012

My world turned upside down

So there's been a whole lot of schedule and lifestyle changes around here that have my world turned upside down. Our nursing schedule is probably at the route of it as we were on a pretty consistent routine. Now having new people in our home seems to be having a negative impact on the kids...medically it covers us better in case of emergency but having so many different people in the home has created inconsistency for the boys and tends to impede on progress until we all fall into a new routine. Just so frustrating that this came at such a critical time in the boys development.

We are working with an occupational therapist for Cameron with expertise in Sensory Processing Disorder. He still doesn't eat, sleep, speak. We are changing everything around here to accommodate his new found sensory problems. His new "Sensory diet" is cumbersome and requires a lot of trial and error and patience. We need to desensitize him to tolerating the activities that currently send him into overload. This is a huge part of our lives and is very difficult for many to understand and very very hard for us when loved ones don't get it. Please take the time to google SPD to understand more about our sensitive man.

On a good note, Brody went to St Chris feeding today to a friend and speech therapist Jamie who is helping us work through the food texture plateau we thought we had reached due to his Trach. It seems it is safe for him to move on past Stage 2 purees... We just have to condition him to tolerate new textures. He wasn't the biggest fan but he swallowed them and ate a ton! Can't wait to keep moving forward and I feel like she's finally the right ST to guide us there.

Oh and Brody graduated out of Physical Therapy!!! This time last year he didn't move his legs at all and we didn't know if he would ever walk... Now he is practically running and graduating his first early intervention service!!!

It may take my guys longer than regular kids, and even your typical preemie but let's face that they were handed some very challenging cards... Whenever it is I will never lower he expectations I have for them to achieve just the timing.

I have had a lot of days lately where I have felt like I couldn't continue to keep it together with all of these changes and an altered support system but just like always I pulled myself back together and we all lived to fight another day... And fight we will.




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Thursday, July 12, 2012

Medical blog turns Baby Journal

I have acknowledged several times to family members how sad it was to me that I didn't have the opportunity to keep a baby journal of all of the cute, fun stuff that kids do. Instead I keep more of a medical blog of ailments and surgeries. Though unique, I realized that I don't take enough time to document all of the typical baby stuff. Regardless of developmental appropriateness, with my guys it happens when it happens so I'm going to make a point of scribbling some noteworthy accomplishments or funny anecdotes here.
This week:
Cameron crawls up and down on furniture by himself , showing a ton of interest in dog and cat-open hand touching fur, kisses red ball on command, plays in the water mister outside without freaking out
Brody finally drinks from a sippy cup, sucks on pretzel rods, likes to feed everyone, gives hugs! walks holding hands to the playground
Both kids mouthing more objects. Making more eye contact with each other and interaction, Brody pinches Cameron to get his attention and plays with his hair and glasses, kids sit in chairs for more than 2 seconds!!




Cameron being engaging




Brody discovered a new hole!




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Sunday, July 8, 2012

If only the mall had these things!

The best shopping cart ever! I have NEVER been able to run an errand and have both of the boys in the same cart. All stores should have the cart Home Depot has! Looks like we'll be spending a lot of time at the depot!


Kids got a new barbecue and Brody thought this would be a good spot for his hot dog. Kid cracks me up


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Saturday, July 7, 2012

Date night and caped men

It was pretty damn hot but awesome seats with an awesome date.





My true modern superheroes


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Sunday, July 1, 2012

Cameron's World

Where's your pants man???

YouTube Video


Working past oral aversions and practicing our teeth brushing. Not a big fan

YouTube Video





Looking cute in my weighted back pack




Too too too cute




Backpack-check. Desk-check. Mom I'm ready for school!




The child who never sits... SITTING!!!!




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