Matt has never done anything the easy way. From the day he was born, through his entire NICU stay, through the many therapy sessions that he endures on a daily basis, he has taken the road less traveled. I should have known on that first day– when he arrived three months earlier than expected–that Matt was a force to be reckoned with. Thank goodness while we travel down this difficult road with Matt, we have found that he is an absolute joy to know and love and all of our struggles are worth it because he is here with us, thriving.
Matt was born on July 12, 2006, three months prematurely, weighing just 1 pound 11 ounces. He was so tiny and yet he showed such strength of spirit. We were told that Matt would, hopefully, only be in the NICU for three months and that he would hopefully be a “good” patient who breezed through his NICU experience. Matt had other ideas. My husband, Nick, and I spent the next eight months watching Matt fight for his life. He definitely was not a “good patient!” He contracted infection after infection. He was diagnosed with Necrotizing Enterocolitis and had bowel surgery to repair the holes that were found in his intestine. He was diagnosed with MRSA and was placed in isolation. Then came Spinal Meningitis. He was placed on every medication known to man. He was also placed on the DNR list because his breathing and heart were constantly compromised and he coded too many times to count. He was placed on peritoneal dialysis because he became so bloated with fluids that he didn’t fit on his bed. To top all of this off, there came the diagnosis of Hydrocephalus caused by a blockage between his third and fourth ventricle from the spinal meningitis. Daily spinal taps were performed and then a reservoir was placed in Matt’s skull so that doctors could tap it daily to relieve the pressure building up in his brain, but nothing helped.
After six months in the NICU, a shunt was finally placed in Matt’s brain to relieve the pressure from the blockage between his ventricles. Sadly, Matt’s neurosurgeon told us that the damage to Matt’s brain would be significant–he didn’t think Matt would walk, talk, or even breathe on his own. While Matt is developmentally delayed–didn’t walk until he was three, and didn’t talk until he was older than that–he is our miracle. The fact that he CAN walk, talk, learn and be a crazy second grader, is a true testament to his strength and determination.
Matt has had seven shunt revisions in his eight years of life and yet, nothing stops him. He receives a litany of therapies–Speech, OT, PT, and Vision–both inside of school and outside of school. Finances are stretched to the max because of these added therapies, doctors’ appointments and medical bills. Worry about the next shunt malfunction is always at the fore. Making sure that Matt is growing up to be a kind, socially accepted/appropriate boy is a huge undertaking. But, in the end, it is all worth it. He loves his life and he wakes up every day hoping for a new adventure. He is one of our four joys and makes us find happiness in even the smallest of gains. His sense of humor is great and every time I laugh with him I am hit by the fact that he is one of our greatest gifts. We are truly in awe that we get to parent this great guy.