Our journey through life with hemiplegic cerebral palsy and infantile spasms

Friday, March 1, 2013

upside down

I feel as if my world has been turned upside down. It's been a crazy couple of weeks. We got upped on therapy with his pt, which is great but makes for a even jam packed schedule. Karter, Karsen's older brother, started karate on Tuesdays. In between preschool, therapy appointments, doctors appointments, driving, and diaper laundry I'm feeling a little out of the loop and not so much fun. I miss my friends, I miss random phone calls, and I miss lazy girls nights. All work and no play for this mama.

Karsen has stopped being so resistant to using his left hand. It's like something clicked one day. Mary Beth got him doing some pretty cool two handed things. So, he's not ignoring it anymore which is huge. 
I've found myself getting very frustrated and sad about Karsen's speech.  I. Just. Want. Him. To. Talk. Yes or no would be fabulous, mama would be even better. But we have yet to hear any words. I can imagine it's going to be pretty hard for Karsen since he has such oral motor delays. While talking to his home visitor today, we were talking about where he is hitting in the age bracket of certain areas. Like receptive language (basically how much he understands) he's hitting at a 12 month age, expressive language (being able to talk or communicate in some way weather it be speech or sign language) he's at a 6 month age. That kind of broke my heart. I hate seeing him frustrated, I can tell he wants to tell me something. I just wish it were easier for him. 

It's starting to get harder (emotionally) being around strangers with Karsen. People are asking more questions, which is fine, and many people try to talk to him like they would many other 19 month old kids. At the grocery store, the clerks often offer him a sticker. Such a small gesture and I'm grateful they include him, but I'm sad Karsen doesn't get to enjoy that simple joy of a sticker, instead of putting it straight in his mouth. It's also been especially hard being around kids his age or even younger that are talking up a storm and running all over the place. I hate that everything is a struggle for Karsen. But with all this said, I'm starting to feel like he's at a stand still again. Time and time again I have felt this way, and every time I do he does something amazing. So, I know great things are in store for us. Maybe it will be a word, maybe it will be more use of his left hand, maybe it will be some sign language, maybe he'll attempt to weight bare on both hands. Whatever it may be, I know he'll blow me away like he always does. 

Check out that two handed action. Did it on his own, no prompting from me. 

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