Beautiful Life

Hey child up and go; A big world is out there waiting for us to live in every day. Outside you will find, there is love all around you; Takes you, makes you wanna' say; That it's a beautiful life and it's a beautiful world and it's a beautiful time to be here, to be here, to be here. -Fisher

Friday, February 15, 2008

What's the Diagnosis?

Unlike some families that are able to keep their child's special needs private, we will not likely be able to do that. Our daughter, Wei Kang Tong, or Claire as we will name her is 27 months old. She was born with a form of spina bifida called meningomyelocele. This is one of the more severe forms of spina bifida and it comes with many complications but she doesn't appear to be as severely affected as she could have been. 90% of the children born with this will also have hydrocephalus at some point and need a shunt. There is nothing in her medical file to indicate that they suspect her of having hydrocephalus but that does not mean she isn't affected. Tethered cord is also common with her diagnosis and she has a form of club foot (talipes varus) which will need treatment. All that being said, we believe she was "fearfully and wonderfully made" just as it says in Psalm 139:14.

Claire's last known evaluation was when she was 18 months old. At that time she could sit up and stand alone which are good signs because one of the complications could be loss of function of the lower extremities. But, she was said to have "slightly increased" muscular tension and "slightly poor" nervous reflex so that indicates that she will most certainly need physical therapy for her legs. Of course we will still have to wait and see if and how well her legs work. Also, at her evaluation she was said to be able to use her fingers and thumb deftly and she was imitating words. She is described in her growth report with these words: "Wei Kang Tong is a very active and lovely girl who likes to communicate with familiar people. When she exposes her emotions, she will dance for joy at pleasant things..." These are all good signs that give us hope!

We have requested updated information about her progress and we hope to get some feedback soon. Until then we will pray for her healing and continued progress. Just the fact that she looks so good in her photo and was able to do some things shows just how strong she is. She is a miracle!

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