Emma's World: P.S. to Results from Germany

Tuesday, January 13, 2009

P.S. to Results from Germany

Also, if you're interested in more background on this, please read the emails from me to Dr. Judith Hall and from Dr. Hall to me (see links on right hand side).

2 comments:

Barbara said...: Thanks for visiting and commenting. I see from my quick glances at your blogs that you have some very difficult situations in your life yet know how to praise and thank God in the midst of it all. A great testimony.

I will visit again and read more but at present it is late in the evening after having 14 people from house church to dinner.

Blessings to you. Barbara; January 25, 2009 at 3:11 PM
Barbara said...: Thanks for visiting and commenting. I see from my quick glances at your blogs that you have some very difficult situations in your life yet know how to praise and thank God in the midst of it all. A great testimony.

I will visit again and read more but at present it is late in the evening after having 14 people from house church to dinner.

Blessings to you. Barbara; January 25, 2009 at 3:11 PM

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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.