Saturday, August 11, 2012
Update on Joshua
We took our son Joshua to see a geneticist who our neurologist referred us to after he had bloodwork done to test what genes were affected in his condition. We had been told by the orphanage that he had an abnormality of the 18 chromosome.
The bloodwork came back that he actually has a part missing of his 14th chromosome.
We learned that he's missing the large
r part of one of his 14th chromosomes and that it is a rare condition that theres not alot of information about. There are some characteristics among the cases of this disability--including small head size, severe cognitive disability, inappropriate laughter, and hearing impairment-- all sound like Joshua except that we don't yet know is hearing ability. The only long term expectations they gave were that often there will be degeneration of hearing later in life, that the life expectancy is not as long as normal, and that there can be a sudden death without any signs of something being wrong. He also said that he didn't expect that Joshua would make any significant gains in motor/cognitive abiity with his condition.
While its good to know his condition more accurately and to learn that some of these behaviors Joshua has are "normal" for his condition, in general it was not a very encouraging visit. Apart from faith in God, it would be quite disturbing and frightening. With faith in God, we can rest that Joshua's life--however short or long--is in God's hands. He has a purpose for it and it is good.
"...all the days ordained for me were written in your book before one of them came to be." Psalm 139:16
Apart from faith in God, I might despair at Joshua's diagnosis for no improvement-- as he is totally dependent for feeding, dressing, diapering and functions at the level of a 2 month old my husband estimates. With faith in God, I can trust God with his future which is in His hands. Unlike most cases of a missing part of chromosome 14, Joshua did not have the love and nurture of a home for his first 4 years of life. We have already seen improvements in JOshua--and every little thing is big to us! The first time he looked right at me and smiled--like he really saw and recognized me--was amazing. The first time he actually pooped all on his own we cheered! He has learned to roll over,eat pureed food (instead of just a bottle with a hole in the nipple), he's more alert then when he first came and will follow me around with his eyes sometimes, he squeals when people talk to him and when he goes outside...these changes have come since coming into a family, and we hope that Joshua will continue to blossom with love and attention that he did not know before. We pray that God will do miracles through him and bless him with growing ability. Regardless, we know that God will accomplish His purposes for and through this special little boy that He has given us, and in that we can have peace.
We know it won't be easy, but please pray that we will trust our Lord with our son Joshua.
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