In 2010, our twins, Eleanor and Andrew, were born at 28 weeks gestational age (due to pre-term labor caused by an incompetent cervix)–three months too early. Eleanor sailed through her two months in the NICU with very few bumps in the road. Andrew had a rougher go and spent five months in the NICU before coming home. You can read their NICU stories here.
Andrew was born with a perfectly healthy brain. However, when Andrew was about a month old and still in the NICU, he became extremely ill and septic from a horrible infection called Necrotizing Enterocolitis. He survived, but not without serious neurological consequences. Today, he has spastic quadriplegia cerebral palsy, bilateral and cystic Periventricular Leukomalacia (PVL), infantile spasms (no spasms, but regression + hyps), acquired microcephaly, cortical visual impairment, and auditory neuropathy. And due to lack of coordination and aspiration risk, Andrew had a g-tube (mic-key PEG) placed at 20 months of age to receive all his nutrition from (in the form of a blenderized diet).
In layman’s terms, this means that Andrew has minimal use of his arms and legs, has poor head control, is unable to sit, crawl, or walk. He is unable to eat by mouth and receives all his nutrition in the form of blenderized food through his gtube. He also has a seizure disorder which has resulted in the loss of vision and has stunted much further physical development. And while Andrew can hear sounds, his brain does not process it the way it is supposed to. For example, we hear “Hi, how are you?” but what Andrew might hear is “hieiaiteiatheat?”
I know, it all sounds pretty devastating. It was pretty devastating to slowly learn all of this during the early years. But if you, too, are a parent of a severely disabled child, believe me when I say this: it gets better.
Andrew smiles and laughs. A lot. He loves to swim, listen to music, attend birthday parties, lick lollipops and popsicles, snuggle, play with adapted toys, “sing” to his favorite songs, and more.
Andrew has had a very difficult start to life. But these days, he is a very happy little guy and brings much joy, love, and laughter to our family.
This blog was created to update friends and family on the health and developmental progress of Andrew, in particular. We also hope that it can be used as a helpful resource for families who find themselves under similar circumstances.
And, finally, we use this blog to offer a vision of what family life with a disabled child can be: a richly and radically positive, hopeful, loving, and dignified experience for all.