Our journey through life with hemiplegic cerebral palsy and infantile spasms

Monday, November 18, 2013

One little signature

That's what we are waiting for now. One stupid small signature at the bottom of a form stating Karsen's drool didn't respond to the robinul. Ahhhhh! I want pt pull out my hair! Pull it together people! We've been waiting how long? In the mean time, Karsen's seems to be more irritated by his rash than usual. I'm trying my best to stay calm about it, but man, seriously?! Not understand why this processes is taking so long. It's not like we are the first ever to need a referral for Botox. Bahhhh! Ok, I'm done throwing my fit now.
In other news, Karsen has been doing great. I'm starting to feel like we have hit our typical plateau. We had a lot of big accomplishments, so I knew this would happen. Life is getting easier and harder all at the same time. Karsen throws fits more than Karter ever has, and I know it's his lack of communication, his inability to speak words and tell us he doesn't want to. The newest? The car seat protest. Anyone else deal with this? I had it with Karter as well, but just like everything else with Karsen, it gets stretch out over a longer period of time. Karsen has now decided he wants to sit at the table like a big boy, so out went the high chair. One less chunky baby device in my house. Woo hoo! We also switched over to a toddler bed. He's done great! Goes to bed super easy, just like he would in his crib. But we are dealing with earlier wake ups, which I'm sure will eventually stop. I can't remember if Karter went through this or not. We are still on seizure watch, as always, but no signs of any (insert happy dance). He's starting to get really good at eating yogurt all by himself, and is letting less water fall back out of his mouth when he's drinking out of his now newly cut short straws. It really has helped. If anyone is reading this is having issues with lip closer for their child and wants tips I'd be happy to share. Just leave me a comment. Oh and I finally got around to ordering a back up pair of glasses for Karsen, since his new favorite thing to do is hide them from me weeks on end, little stinker.
Still have yet to hear any words. Even talked to his speech therapist today about it. Had a deep conversation about communicative devices. We aren't there yet, and won't give up on his speech ( EVER!) but it's something we need to keep in mind. I want my sweet boy to talk. I want so badly to her par him yell mama, any word would do. I'm beyond proud of him, he's come so far, but it's really hard for me to think if he may never speak, never talk. It's a tough road travelled but worth every bump and scrap along the way.
We get a therapy break for thanksgiving. I'm even thinking of taking my boys out of town for a bit, get away from the house, the cleaning, the laundry and just enjoy my boys. Any fun ideas for that week of break?