Saturday, March 12, 2011

Day to Day

A few people have asked me to explain exactly what Asher's challenges are and what his condition is like currently.  Asher has muscle tightness (spasticity) in his entire body but his right side seems to be the most effected.  For a long time Asher would only belly crawl but now he is able to crawl on hands and knees and is doing a lot of knee walking (I think it makes him feel like a big boy).  Asher is able to cruise along furniture but is not able to stand on his own or walk yet.  Because of the tightness he stands/walks up on his toes and needs to wear ankle/foot braces to correct this and to correct his left foot from rolling in or pronating.  Now that Asher is working on walking in his gait trainer we are also noticing that his is turning his left leg inward at the hip.  We are in the process of trying to correct this and are still trying to decide on the best solution.  Asher primarily uses his left hand to play, eat, and hold his sippy cup but he can use his right hand to some extent.  He can't fully extend his right arm but doesn't ignore that hand/arm altogether which can be the case for some children with cerebral palsy.  He has a hand and elbow splint that we are using to help with these issues.

The overall muscle tightness in Asher's body also affects the muscles used for eating and speech.  Children with cerebral palsy tend to also have difficulties with breath control which can make speaking more difficult and seem more choppy.  Asher is showing progress in both these areas but we still have a ways to go.  Because of the lack of verbal communication we started working on signing with Asher pretty early on.  He does great with his signs and picks them up very quickly.  He has even started to combine his signs. 

Now that I've gotten everyone up to date on Asher's challenges let me tell you a little bit about what a joy he is.  He is a happy almost two year old with a great little personality.  He laughs, cries, throws fits and gets into whatever trouble he can.  He can be mischievous and is very strong willed but is also super sweet.  He's sharp as a tac and is a little ball of constant energy that I struggle to keep up with.  Our days aren't filled with sadness or dread.  This is our normal and even though it can be challenging at times I feel so lucky and blessed to have such a wonderful child.  He fills our home and our hearts with so much love and laughter that  I can't even express it in words.  I can't imagine our lives without him and I feel so grateful that he made it through those touch and go first days in the NICU.

1 comment:

  1. We all love our Asher. When I'm not visiting, I think about him every day. Just thinking about my last visit makes me smile until the next one. He makes is grandma laugh.