Culllen

Heather, Thank you for starting this! My name is Dawn and my son, Cullen, was diagnosed with Tetrasomy 9p at 6 months of age.

Age: 1 year

First Diagnosed: 6 months

Birth weight: 5lbs 4oz

Current weight: 28 lbs

Anomalies:

* Sacral dimple with low-normal conus medullaris

* Single palmar crease

* Low tone hearing loss (may be related to excess ear fluid)

* Large fontanel* Very slow growth - in 3rd percentile

* Psedoarthrosis of the right clavical (collar bone formed in 2 pieces)

* Delayed gross motor skills

* Sat up at 8 months

* Mild left pelvicaliectasis

* Under ossification of pubic bonesMuch of this sounds far worse that it really is. Most of his conditions are what doctors call "variations of normal". In other words, everyone has some deviation of normal. Like Heather, I look forward to meeting all of you!
January 13, 2009 6:43 PM