Our journey through life with hemiplegic cerebral palsy and infantile spasms

Monday, October 20, 2014

He's a 3 year old

Karsen has now been in school for two months and LOVES it. I can actually leave after saying good bye to him, something I didn't think he'd ever be able to do. It helps having his nanny work there and the other teachers loving him just as much. They are all amazing. I get pictures weekly from one of his teachers on all the amazing things he is doing. Two handed things, fine motor, gross motor, he's doing amazing. I was telling Kuper the other day, minus the speech delay I feel like he is just like any other three year old out there, tantrums and all. ha.
It makes my heart so happy when I pick him up from school and he's so happy to see me but clearly has had a good time. He's even made a few friends, which let me tell ya, has been a worry of mine. He can't talk, how can he communicate with other kids? How can he ask a friend to play in the sand with him? Well, apparently speech is not needed. When I walk in to drop him off, I hear other kids say "Hi Karsen!", "Look Karsen, look what I'm playing with." These kids just tug at my heart strings. I don't think they realize the impact they are making on our lives. 
Karsen does seem to be having seizures again. They aren't the infantile spasms like before, thank God, and they aren't as frequent as before either. He's only had three of them in the past few months. I believe he's been having absent seizures, we can't be sure until his EEG. They aren't affecting him a ton, he does seem to sleep much longer during his naps when these happen but other wise he's not doing bad. Hopefully after his 8 hour EEG we'll get more answers. I ended up talking to our Neuro about the spells after his Epileptic specialist told me "Well, if he's having seizures and they aren't affecting his daily life there's no need to do anything" (WHAT?!) This was after I told her that he took a four hour nap and his sleep is all over the place. I'm glad I went with my gut and listened to Kuper when he said to just contact his neruo instead. We love her. She's amazing and has always listened to me, in fact even said "you know your kid better than I do, what do you think  is going on?" Isn't that how all doctors should be? 
We've been seeing Karsen's new speech therapist now for over a month. Karsen's finally warming up to him. He's really working on saying the B, M, and P sounds. He's almost got all down. He's talking people! I mean, really talking! He says ya, more, ma, da, bye bye (it actually sounds like bye bye too!!!!!!) and ipad.... not joking. lol He's really starting to come along. I told my friend, his old speech therapist, I feel like I'm finally seeing the light at the end of the tunnel, its small but it's there. We'll get there. It's going to be a LONG road with lots of speech therapy but I have no doubt  that he will be talking. 
I've also noticed a complete change in Karter and Karsen's relationship. They play together! Like real play! Rough, tough, boy, tackling, rough housing play. I still feel like a referee but I think that comes with being a mom in general. It makes me so happy, so overwhelmed with joy to see the two of them play together, something I wasn't sure if I'd ever see. I've worried about Karter hurting Karsen when they rough house but instead Karter is usually the one that catches the up kick on the chin in the midst of rolling around on my bed. Again, never thought Karsen would be able to hang with Karter as rough as they get. Happy mom of boys over here. 
I'm so proud of Karsen, he's so tough, he's endured so much in such a small span of time. He surprises Kuper and I constantly. I'm excited to see what God's plans for our little man is, where he will take us next. We are beyond blessed with such a full life.



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