TJ's Story

Posted by Michelle Finn on

                         

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. 

Although all of this has happened, TJ has taught us many things. He has taught us the meaning of TRUE LOVE. He is the happiest kid I know and everyone adores him   He's strong and can light up a room with his smile. TJ loves very soft blankets and loves to cuddle.  He adores his older sister and loves watching his older brother play his PlayStation. He has the best giggle and laugh  TJ is 13 now, and we have a long road ahead of us.  He is using a gait trainer and is attempting to walk....although many times assisted. Watching him reach a milestone is such a joy!!!  I thank God everyday for blessing me with this little boy.
Don't forget our fundraiser for 1p36dsa. 25% of the profits from ALL the sales this month will be donated to 1p36dsa.org. Shop For an Amazing Cause.
Just click on the home or catalog button above to shop.

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