Our journey through life with hemiplegic cerebral palsy and infantile spasms

Wednesday, May 22, 2013

Cut it short

Today was hands down the hardest PT session we have ever had. In between the screaming, crying, and melt downs Karsen was hitting himself and hitting his PT. After 25 minutes of attempting to get something out of the session, I decided it was time to take him home. Enduring another 35 minutes of that wasn't going to happen. It wasn't good for Karsen or Karter and it definitely wasn't good for me. 

As I loaded up Karsen who was still back arching and hitting and proceeded to load up Karter, who of course is more trying than ever, I got in my seat and cried. It felt good to cry. it felt good to just let it out. I hate having to put Karsen through this every day, I hate having to out Karter through this every day. One of Karter's statements during pt was "Karsen always hits" yes, yes he does. I feel horrible my oldest child has to deal with that. I feel horrible my youngest child hits because he can't communicate any other way. The frustration from all parties is becoming more and more obvious as time passes. We've come a long way but we also have a very long way to go. I fear, after today, behavior might be an issue for Karsen we are going to battle for a while.  Praying hard today and continuing to cling to God.

Monday, May 20, 2013

Ready for summer

Wowza! It's been a while since my last post. I have not been the best blogger. To my defense, life has just been flat out busy. After Karsen and Karter swapping for a week straight of who was going to throw up for the night and getting back into the swing of things I've been a little behind. In fact, cloth diapers have been put on hold for over a week.... :-/ Sometimes you just a need a break. On that note, I am very much so looking forward to summer. We have decided to take a few week breaks here and there from therapy. I think it's important for Karsen to still enjoy being a toddler and also feel those breaks have helped him sky rocket when he starts back up again. 
Yesterday, I was talking to my husband about how I really just need to step back and look at how far he has come. I mean common, he's eating normal food!!!! That's a huge accomplishment. I'm not as worried and stressed about him chocking anymore and he handles drinking out of straws like a champ. I'm still avoiding the super hard stuff (carrots, apples, that sort of thing), I'm just not really ready to step back into hover and swipe the food out mom. Karsen has started to acknowledge he has a left arm now. If you ask him to blow a kiss with lefty he'll do it. I was shocked. He also will raise both hands up in the air if you prompt him too. We have seen more and more signing and more understanding in this kid in the last month than I thought we'd see. Here are his current signs: all done, more, yes, hi, eat and please. A month ago it was pretty much just yes. His understand is so clear. I was putting his rash cream on his chest and chin the other night and said "Look up." and he immediately did. He still throws the biggest fits but I'm starting to see that some of it is just being a toddler and me telling him no is not acceptable to him. ha
We are still not independently walking, but he's doing so good. He'll walk if I hold his hand, and he surprisingly loves his walker. It's absolutely a confidence thing now. The minute I let go of his hand, he sits down to butt scoot. Little stinker. He's one smart cookie.
Two more days of preschool for Karter and it will be official summer for us over here. I'm really excited to take the boys to the water parks once they open. Let the summer fun begin!




Monday, May 6, 2013

Please...

In the last two weeks a light bulb has been turned on for Karsen. He started signing please, and doggy, and staying strong with yes and all done. Yesterday, on a drive home I asked Karsen to say mama and he said ma!!!! It's a tiny but huge step in the right direction.

He's really starting to figure out his walker and is doing quite well in it. I'll post pictures when I have time to actually take pictures. We are getting close to walking but it's 100% confidence that he is lacking. He'll walk around holding my hand for a while but the minute I let go he sits down. He's also very close to pulling himself up to standing.

The biggest improvement we've seen in the last three days is his awareness of his left arm. He's starting to move it when given the command and is starting to play with his hand, I even noticed him use it as a helper!!!

Karsen has given just a glimpse of how amazing and awesome he is and how many things he is breaking through. I'm so proud of him!

Oh and I forgot to mention, back on goes the eye patch for an hour and a half a day. Glasses will probably be on until he's at least ten if not forever. Good thing he looks so stinkin cute with glasses on.