Wednesday, March 26, 2014

BWS - Intellectual Effects

When we first reviewed Micaelyn's file and started researching all her individual diagnoses we pretty quickly realized she almost certainly had BWS (and Dr. Beckwith himself, for whom BWS is named, agreed).  In discovering she had BWS we had to be prepared for her to have additional problems related to the syndrome but not recorded in the very limited information we had on her, so we started learning about all the other possible issues we might have to deal with once we got her home.  There were a number of sources that listed "mental retardation" as a symptom (many, including wikipedia, have now removed this wording), and there were others that talked about learning disabilities.  Some sources just listed these things as a feature of BWS, while the better sources described the possibility that any significant intellectual deficiencies were the result of untreated hypoglycemia (hypoglycemia during infancy is another sign of BWS).

We knew that as an orphan in the poorest province in China there was very little chance Micaelyn had been treated for hypoglycemia, so we also knew there was a significant possibility she would have noticeable intellectual deficiencies.  Thus we weren't surprised as we started trying to teach her different things (e.g. colors, letters) that she was having difficulty.  I first started trying to formally teach her a preschool curriculum at 4 years old, but it quickly became obvious she just wasn't ready for the material.  We eventually enrolled her in a really good preschool, and it didn't take long before the teachers suggested to us she had some learning disabilities.  We ended up holding off on sending her to kindergarten, so she didn't start until this school year (she is 7 years old right now).  Thankfully my prayers for her to have a good teacher were answered, and she not only has a wonderful teacher but also has some great tutors as well.  They even enrolled her in an after school enrichment program where she gets further help in her academic material.  Overall she is doing well, and we are very pleased with her progress.  It may involve more work and take her a little longer but we feel confident that with time, extra help, and the right motivation Micaelyn will do fine in school.

At this point Elianna does not appear to have any learning disabilities, though since she just turned 2 it would be nearly impossible to rule them out.  However, because she was born in the US, was diagnosed with BWS as a newborn, and received all the appropriate medical treatment we have no concerns about intellectual deficiencies resulting from untreated hypoglycemia.

Here are a few pictures from last fall (and late summer).  My computer got fried as a result of lightening striking our house so I am just now getting back to blogging and figured I'd include some older pictures.
Last September, a rare glimpse of Elianna with her mouth closed.



Pirate day at Krispy Kreme (free dozen donuts for everyone dressed as a pirate).

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