Friday, March 29, 2013

FOUR MONTHS HOME!!!!

Today March 29 is is a solemn day because it is Good Friday, the day Jesus Christ gave his life for us.
It is also a joyful day as we celebrate our boys being home four months!
The boys are doing amazing!

Silas now weighs 32 pounds, only 2 more pounds and he has gained DOUBLE what his weight was when he arrived here in America! He is getting stronger every day. Up until last week, he had no control of his right hand & any movement was involuntary. He has started to have a little control. I have found a Neurological Nurse Practitioner who has been the best! She has found a medication that targets the spasms he was having. It is actually an anti-seizure medication. He does not have seizures, but the fact that this has worked indicates that he has some sort of Dystonia. In researching the different kinds, he actually has symptoms of a few different types. The only way to know for sure is by doing a muscle biopsy, which his neuro NP does not want to put him through at the moment. Silas was scheduled to have surgery to correct his strabismus this past Tuesday but it was canceled at 7:30 the night before because his EKG report was lost by the hospital that did it. He is now scheduled to have it next Thursday. If you are wondering why he is in only a diaper so often, its because he is the most hot blooded kid EVER! The other day we were in the dentist office, I was freezing and he was dripping with sweat. It is never a fever, he just gets hot so easily! So when we are at home, I let him just stay in a diaper so that he is comfortable :) The picture on the left is from December 4, 2012, during his hospital stay. The other two are this past week!


Andre has also gained some weight! He is up 5 pounds since we brought him home. He is saying "Ma Ma" and signing and saying "More." He sometimes try to sign "more" with his feet. It is so funny. He blows kisses and gives them. He has learned to play with toys instead of hitting himself with them. He does still get over stimulated at times but it is only when we attend a gathering with a lot of people. We went out to eat for the first time since the boys have been home at Ruby Tuesday for World Down Syndrome Day. He did so well on his special day! He is starting to walk. He has taken a couple steps independently.The picture on the far left was of Andre while in the orphanage (It was his profile pic on RR) The other 2 are him now. Can you see the change? The one of him in the swing was this past weekend at church for an Easter Egg hunt. As you can tell, he was not interested in the eggs!


Andre at school
Andre celebrating WDSD at school


In the past 4 months, the boys have started attending school. We eased them in, first attending 8:30-11:00 3 days a week, now 3 full days a week. They attended their first Mardi Gras Parade :)
Andre celebrated turning 4 years old, which was the first time he has ever celebrated his birthday!
Most important of all, they are HAPPY!

Andre watching TV with his big brother.



All of my boys after a Mardi Gras Parade







2 comments:

  1. Sounds like Silas may have a temperature dysregulation problem. Both my twins have it. Temperature is typically regulated by the Hypothalamus. Your blog looks fine by the way!

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  2. wonderful update! i've been checking often to see how these darling boys are doing! thanks for sharing! (how old is silas?)

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