You may think you know, but you have no idea.

When we started this journey we didn't know what would come of the boys... would they both make it? Would they have neurologic issues? Would Cameron be able to see, to go to mainstream school, to drive? Would Brody be trach'ed, have a voice, be able to eat by mouth? Not to mention what judgements society, other kids and ignorant onlookers would make. We have had so many complications along the way. We knew that the time in the NICU would be tortuous, but the day we brought them home would be a relief and the rest would hopefully be maintenance and minor tweaks through therapies and procedures. What I never expected is the "tight rope" we are still walking with Brody. His condition is still very guarded. He is a complex kid with a lot of systems in play-one thing goes wrong and a domino effect occurs. Careful communication and diagnosis are imperative for his well-being and development, however this is where his practioners are lacking. We have had pediatricians take him on as a patient who are soooooooo out of their league and completely throw his fragile balance out of whack. I have begged, pleaded and screamed at pediatricians, specialists, receptionists, and the medical supply company. No matter how sick your kid is, the healthcare industry is still a business. Interesting to be on the other side of things now. We have felt incredibly lost, unprepared and alone in all of this. Outside of the NICU it has been near impossible to get the ear of the right people who can help us help Brody.

There are those who believe in reflux and those who call it a myth... like the Lochness or Big Foot...but I don't see the big mystery. I have had 2 kids with serious cases of it and fortunately Cameron was able to escape it's wrath without other complications. Brody has had surgery to correct it, now has a hole in his stomach as a parting gift, had his throat lasered twice and now... has reflux again. Doctors talk about it ambiguously. When I say the word reflux it is quickly followed with the term "alleged" as OJ "allegedly" killed Nicole. What is so inconspicuous about milk in his mouth an hour after a feeding, screaming (for a kid with no voice) like you've never seen, arching, hiccups and coughing??? After the repair that Brody had these things should NOT be happening. The problem with my kid having it is that he has an airway opening the size of a coffee stirrer that is exacerbated when stomach acid comes in contact. Hence, the domino effect. Any changes (environmental, food adjustments for weight, med adjustments for weight, extra gas, venting or not venting his belly) cause changes to all systems involved-pulmonary, gastrointestinal, larynx-vocal chord-airway. Meds to help one ailment in turn cause more severe problems with another. We never get ahead and have no one to coordinate. As on top of things as I am, I am feeling helpless.

Finally our nurse recommended some input. Thanks to her I have ditched the incompetent pediatrician I entrusted with my son's life with and we are seeing a group for special needs and chronic kids down at St. Chris. Brody needs a feeding team with nutiritionist, GI highly involved in his care, and much more attention paid to his paralyzed vocal chord. As much as we have liked our specialists up to this point as people, it's time to pull out the big guns and get him to an airway/voice center and have food in/out monitored much more closely by the right people. We are very excited for 2:30 today to come. I have been counting down the minutes since early last week when I was at a loss for what to do and almost had him re-admitted to St Chris's just to get someone to look in our direction.

Our family is all in this together but I am the one who knows Brody inside and out. I know his cues, his cries, his meds, proper positioning, oxygen levels... as Brett says I am CEO of the babies. Brody's condition leaves a lot on my shoulders. If I were to get sick my mom would step in but it would be very challenging. I get no breaks and haven't left the house since he got home for more than a doctors appointment and seeing the light of day is not in the cards in the near future. I am honored to be his mommy, his caregiver, his nurse and his life line.

Of course the pictures we post are of the good times. There are no cameras rolling when Brody is hysterical in pain to the point of working himself up to a level that you think may put him over the edge. There's no one to document the fear that we live with thinking his oxygen equipment could malfunction... again! No one sees the desperation I feel when there's just nothing I can do to console him when everything is going array. We have plenty of good times with Brody and they are glimmers of what life will be like when his doctors finally figure him out, but a day in the life at the Collins house...you may think you know, but you truly have no idea.