Emma's World: Well, we're off to the convention!!

Friday, June 19, 2009

Well, we're off to the convention!!

I'm excited....we're going to the Microcephaly Convention in Costa Mesa, CA and hopefully will get to meet Holly and her family in person!! Fortunately we live in Southern CA but not close to Costa Mesa....it's about an hour's drive away if the traffic is OK.

They are supposed to have things for the kids to do while the parents are in workshops....boy that would be great!

I'm taking my camera, so I plan to post more soon!

No comments:

Post a Comment

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.