Our journey through life with hemiplegic cerebral palsy and infantile spasms

Tuesday, March 18, 2014

Today I saw a little glimmer of light

It's been a very long road for Karsen's speech. We see his speech therapist once a week and have been doing a ton of work at home here and there with oral motor (feeding, drinking, stimulating his mouth). It's been a lot of work with very little progress. There IS progress though. It's the little things, like his lip closure on spoons, his ability to drink out of a straw with out biting it.  He's getting stronger and is getting there. As far as speech goes we've only really gotten him to make the "ah" sound, which he consistently uses on a daily basis for just about everything his pitch and tone just change with different things.  He's also been able to make the "eye" sound here and there, not a ton, but he has. Every now and then we'll hear an "ee" sound. As you can tell, we've had to take things very slow with Karsen. Ive had my moments of doubt and have voiced them many times to his speech therapist about him never talking. She's squashes those feelings right then and there and has always reassured me he will, it is just going to take a long time. He's having to fight through a lot of brain damage to make this happen. He's amazing, it's not surprise. Well, today my sister called and Karsen wanted to say hi. I told my sister Karsen wanted to say hello. I heald the phone to his ear (he's done this before but all that usually comes out is "aaahhh") and told Karsen to say hello. Next I heard a sweet noise I have never heard before, an "Oh" noise!!!! and it was even dragged out and changed in pitch. He was trying to say HELLO!!!! I pretty much hung up on my sister after I squealed with excitement and immediately called Karsen's speech therapist (whom happens to be a good friend). Tried to get him to say hello to here, he kept shaking his head no. lol I then asked him if he was going to be a turd. "ya" his response. Smarty pants. It's just a glimpse but I can see that we will get there. Still working on quite a few different noises but this is a huge step for him after months of work. So proud of my little man. 

Be thankful for today, be thankful how easy it is for you to form words to make speech. Something I never realized could be so hard for one tiny person (or not so tiny person). He's so strong and has come so far. 



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