Written by TJ's Mom Casandra
My husband always knew there was something quite not right with TJ. He always had these eye rolls that were awkward and never knew what they were. At three months old TJ was rushed to the hospital because he wasn't breathing right and his color was off....almost gray/blue. We almost lost him...code blue. TJ was diagnosed with tracheomalacia, fluid around his heart and he ended up getting a nissan and gtube placement. At one year of age we did a genetics test which then diagnosed him to have 1P36 Chromosome Deletion. What was going on with my lovebug?? What is 1P36?? This is where our journey started. Seizures, reflux, low muscle tone, non verbal, wheelchair bound, tons of different medications, certain diet, lots of hospital stays, late night ER visits, not to mention, numerous specialists and therapies. Years down the road we learned he has PFO (patent foramen ovale). Its guessing and knowing what he's crying for, what he needs, what he wants. It's trying to medical equipment through insurance, ordering medical supplies (feeding tubes, extensions, syringes, diapers, feeding pumps when the one you have malfunctions), its waiting to hear the words you are yearning to hear from your non verbal child say "Mommy" or "Mom", "Daddy" or "Dad" (he does find it hilarious when u say it over and over to him and ask him to say it ) The doctors say its a waiting game, but i have faith that one day things will come to pass and he will overcome many of the obstacles that stand in his way.