Hallie 1 week old

Hallie 6 months old

Hallie 14 months old

Hallie 16 months old

Hallie 26 months old

My name is Heather and I'm starting this blog for others with this disorder. My 2 year old daughter Hallie was diagnosed at 16 months with Tetrasomy 9p. I would love to be able to compare and share stories with others who have experience with Tetrasomy 9p. I will layout a baseline of Hallies history and anomalies.

Age: 2 years old

First Diagnosed: 16 months

Birth weight: 7lbs 8oz

Current weight: 24.7 lbs

Anomalies (In order of discovery):

* Hypoxia until 3 months of age, required 02.

*Atrial Septal Defect (found at 1 month)

* Large fontanel

* Very slow growth (3rd percentile for weight)

*Underdeveloped right collar bone (found at 7 months)

* Low muscle tone (diagnosed at 10 months)

*Delayed gross motor skills~Sat up at 7 months~ Crawled at 12 months~Walked at 21 months

*Tetrasomy 9p ( diagnosed at 16 months)

* Hydronephrosis of right kidney

*Sacral dimple*Unusually formed toe nails

*Lactose intolerance

* Most recent-a cyst on her right cheek (was removed) we believe this is related to the disorder.

She sees a genectist at UNC Hospital in North Carolina for this, however there is very little information that has been compared. She also sees a Physical, Speech and Occupational Therapists, to ensure she stays on track. However she is behind in all areas. I hope that this information can be helpful to you and you will share your stories. I only ask that we keep this blog strictly for Tetrasomy 9p, I would love to have others but it would interfere with research purposes.