Austin Ryan Nieman was born May 15th, 2002, at 6lbs. 6oz., 19 1/4 inches with a full head of dark brown hair and interesting looking flat thumbs. He refused to nurse but a couple of times so I resorted to bottle feeding my newborn. Austin seemed normal to my husband and I, the doctors, and other family members despite a few oddities. Austin often spit up his formula, had difficulty swallowing, and occasionally had milk come out his nose. None of these were ever so frequent to bring any concern. Austin was a happy baby, loved music, bath time, being read to, and laughing.
When Austin’s 12 month well baby visit came around his pediatrician noticed he had leveled off on gaining weight. Austin had never been on the growth curve but followed the pattern until his first birthday. After 10 tubes of blood being taken, 3 urine samples, and a CT scan for lack of head growth, we were sent to a geneticist to see if she could make any sense of it. October 2003, Austin was diagnosed with RTS. Things began making sense…after all Austin was 17 months old and just started crawling.
Despite all that, my husband and I are honored that God chose us to raise Austin. He laughs hysterically at pretty much anything, loves Veggie Tales, the Wiggles, Elmo, books, bath time, bubbles, rocking in his chair and rocking horse, and even talking (well mostly listening) on the phone.
Since the diagnosis, Austin has undergone a myriad of testing. He doesn’t seem to have most of the health issues associated with RTS. He had frequent ear infections (which have since cleared up), mild hydronephrosis with his left kidney, and constipation which we treat with MiraLax. In June 2006, he had surgery to remove enlarged tonsils and adenoids which helped him to breathe out his nose and sleep more soundly at night.
UPDATE: My little man just turned 5 years old and will be attending kindergarten this fall. He seems to be understanding more and more each day even though a broken ankle did set him back for a brief time. His signing hasn't improved much but that usually means he's concentrating on his gross motor. He can sign about 25-30 signs but most people have no clue what they are. He's been known to make up signs to make them easier for himself! Currently he enjoys (Ok I SHOULD say adores) watching TV, spinning things on hard surfaces (he's pretty good at it!), and swimming. It's hard to believe he's not a little toddler anymore but as he grows up it's just amazing to watch how he figures things out.
Submitted by Ben and Michelle Nieman of Watertown, NY firstname.lastname@example.org