Brody crawling!

Finally!!! The kid that no one knew if he would ever use those little legs of his!!! Kick ass Brod!

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Camerons editorial debut

Check out page 7, bottom right image

http://miraflex.info/images/MiraflexRectangularFrameGallery/rectjsblack002.html


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Brody big change

After the rough day I had with Cam I got a call from Brodys Pulminologist to let me know how he did on his sleep study. He is officially off the vent at night too! Still on a small amount of oxygen as he was having central apnea on just room air but a BIG accomplishment. Way to go Lil Bro!!! One huge step closer to getting that plastic out!!!

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Cameron- finally some answers!

After begging and pleading for months with every doctor, therapist and anyone who would listen for help, ideas, advice we finally followed a lead from the doctor at the NICU follow up clinic and got some answers. ENT confirmed today that Camerons adenoids are so enlarged that they are obstructing 75-80% of his airway. There is evidence of trauma to his larynx caused by his continued reflux. He will have an endoscopy from GI as well to asses any other damage. We have put off our trip to Ohio until April when we hopefully have sorted out his more immediate health issues. We are of course concerned about this serious information but also there is a sense of relief knowing that there are some answers to his feeding, sleeping, breathing and increased severity of his nystagmus and sensory issues.


We're going to get to the bottom of this and get this baby all fixed up again!


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Sleep Study

Brody with his probe ponytail


C'mon people.. I look ridiculous!


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First Birthday... Kinda

The boys were due 1/11/11 so today we can finally celebrate their corrected age birthday! Eventhough we have shared the last 15 months with them on the outside- to me- they are big boy 1 year olds.

January has been a crazy month! We are on a Information seeking mission with Cameron and his sensory issues. He has had an upper GI, blood workup and we are waiting to schedule a scope in the OR- all of this to make sure that his reflux hasn't cause any more serious damage. Then we go to ENT to make sure there is nothing complicating his vestibular system that might make his nystagmus ( his eyes scanning) worse. Then we go to Ohio for testing that we hope he can stay still long enough to get what we need and to meet Dr Hertle- THE foremost authority in nystagmus research. Were hoping he will have some answers as to how this disorder complicates Camerons other systems and find ways to keep it at bay... And hopefully have surgery to improve the condition.

Brody is going to ENT Friday and that same night getting a sleep study- if that goes well he can come off the vent at night and begin to prepare to get his trach removed in the spring ( as long as we can keep him from getting sick before then!) He is kicking it with spoon feedings and finally holding his own bottle.

Happy 1st birthday babies... You are the Roughest toughest there are.

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Brody

Giddyup!


Finger foods here we come


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