Emma's World: September 2009

Finally managed to catch the wild monkey (aka Emma) in action....getting up on her own with NO HELP AT ALL! I hope you enjoy the video! :)

Purpose of this blog

My daughter, Emma Clarissa, is a beautiful, affectionate, sweet, brave, intelligent little girl who just happens to have multiple serious medical diagnoses.

This blog focuses on her triumphs, challenges and day-to-day life as she contends with both TAR Syndrome (Thrombocytopenia Absent Radii Syndrome, a rare condition which causes skeletal abnormalities and low platelet counts) and GLH Syndrome (aka cerebello-trigeminal-dermal dysplasia, an extremely rare disorder associated with a cerebellar malformation known as rhombencephalosynapsis).

In addition to these diagnoses (or in many cases, because of them), Emma also has microcephaly, global developmental delays, Failure to Thrive, GERD, asthma, and tone and mobility issues (e.g., cerebral palsy).

This blog also provides a place to post helpful links to sites with information on these conditions as well as online support groups. Support groups can be invaluable to parents of children with medical problems, who frequently feel isolated and/or need answers STAT!

WARNING: occasionally a post or comment may contain references to God, or offer thanks or praise to God. We acknowledge His hand in our lives and in Emma's, and thank Him for all He has done and is doing.

Emma's World

Tuesday, September 8, 2009

Got her!!

Cluster Map