Caleb Downs

Ronnie “Caleb” was born on September 6th , 2004 in Shelby North Carolina. He wasn’t an early delivery, he was due on September 9th . It was obvious to the doctors that something was wrong with him (smaller jaw, no eye movement) but they didn’t have time to worry what it was at that time; he wasn’t breathing good on his on and the doctors made the call to the NICU at Levine Children’s Hospital in Charlotte some 60 mile east. Mind you the situation was an overload to his mother and I, we’d just had a baby, and we didn’t get to spend a few minutes with him till they were taking him away to Charlotte alone. Once my parents and I arrived at the other hospital the charge nurse allowed me to stay with him even though it was shift change and no visitors were suppose to be there.

It was a few days before my wife was discharged from Shelby and joined me and Caleb in Charlotte. Caleb was breathing better now but wasn’t feeding good now, wasn’t able to hold much, and was bringing part of it back up. The doctors at Levine did blood work on all of us to see if they could figure out why Caleb’s face looked different and his eyes wouldn’t close.; once they concluded it was Moebius , they couldn’t find a link to it in myself or my wife.

They told us a lot of discouraging averages about people with the disorder, ranging from paralysis, to even death. The doctors placed a feeding tube into his nose to allow him to be fed (Caleb would pull it out almost every time like it didn’t even hurt.) People would bring us different bottles and nipples, and he did progress in feeding so the Doctors saw no further need to keep him, and he was discharged.

Caleb returned to Levine a few months later after his pediatrician did x-rays of his throat and stomach and found that he had a hernia which was the cause of him not keeping his formula down. The doctors operated on the hernia, and implanted a feeding tube, which he still uses today .

He also used the helmet to prevent him forming Plagiocephaly, or flat head syndrome.
Caleb now 4 and a half was sensitive to lights and some noises, now seems unaffected by them now. Had trouble learning to walk, and talking other than “Mumu” and “Adada”; today he can walk alone with a stagger, but he is still unable to speak other words, and though he watches us and others eat, he still doesn’t eat on his own.

He spends most of his days spinning objects in my desk chair; and will lay on his sit and spin and spin himself without acting like it makes him dizzy. He absolutely loves car races, NASCAR in general, and we record most of them on the DVR so he can rewatch them during the week till the next week end.

We were told by Caleb’s doctor that there was only one other case of Moebius in our area, so I’m happy that there are actually so many Moebius families out abroad. It makes me feel so much better about those averages we were originally given when Caleb was diagnosed.

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