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This is TJ's story. TJ was born at 38 weeks. He decided to come on my baby shower day. Haha!
When he made his arrival he did not cry nor did he ask for a feeding like a baby is supposed to do. Hours went by and I started to get worried. So I had my husband call the nurse in. He just laid there. The nurse called the pediatrician in. He noticed TJ had a tongue tie and cut it right in the room. Thinking maybe that's why he wasn't able to eat. He was wrong. TJ was then taken from us and a CT scan was done. Pediatric nurse came back without our baby and gave us the worst news of our lives. TJ was diagnosed with Agenesis of the corpus collosum. The bridge that connects the right and left hemisphere did not develop all the way during 20 weeks gestation. He was put on a feeding tube since he wasn't able to take a bottle. He so badly wanted to take the pacifier but was unable to latch onto it. He did have a seizure after birth so he is on seizure medication called Keppra.
He spent around 30 days in the NICU until we were finally able to take our baby home. It's been some of the hardest days of our lives. After a year we found out he has cerebral palsy. He's got hypotonic quadriplegia to be exact. He has weak muscle tone so at almost 2 years old he still can not hold his head, roll over or sit on his own. He does get his therapy throughout the week. He also has a nurse 5 days a week. TJ requires a lot of work. Again this journey with him so far has been some of the hardest times of our lives. We just want the absolute best life we can give him. He deserves it.
Fast forward- TJ was recently hospitalized in the PICU at UMC in Las Vegas. He has been there since Feb 22nd on a ventilator after getting what we thought was a simple procedure. He also had a grand mal seizure causing more damage to his brain. All we ask for is prayers to get him back home with his family and get the love he deserves.
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