Hi Everyone,

It’s been a really long day…our first nursing glitch occurred last night. There was miscommunication with one of the new nurses and no one showed up for the 12am-8am shift! Needless to say, I’m running on 2hrs sleep for the last 40hrs. It’s been awhile since I’ve pulled an all-nighter. Unfortunately, there were no back up nurses available from the nursing agency. The good news is our High School nurse lives near us and she was kind enough to come over this morning at 6:30am to give Corey her shot. I spoke with the agency and we are hoping that because we are still a new case for them and don’t have our regular nurses yet, this was a one time thing. I am smart enough to realize that is not a guarantee. Therefore, those of you who volunteered to be on my back up list…please stand by! I have a list and I’m not afraid to use it!

Corey’s lack of therapy is beginning to concern me. I was ranging her this morning and her left side was locked up. I had a great deal of difficulty trying to release her tone. We did the best we could and I worked on her for 15 minutes per limb. Fortunately, Corey’s cheering coaches came to visit today. I really need to thank her conditioning coach Chris. He and Corey had a great exercise session including myofacial massage therapy.
What a difference in her flexibility! Tonight as I ranged her I am amazed at the difference in her movement. Chris is coming back tomorrow morning. He and JohnPaul are going to try to get Corey standing and perhaps we can help her take a few steps.

Corey and JohnPaul had a great day together. They had more time on the IPad and went bowling together…sort of. I bought felt bowling pins to help Corey with her grasping reflex, differentiating color and extension exercises. JohnPaul taught her how to grasp the felt bowling ball with her fingers in the holes. He set her up at the top of the ramp in the kitchen area. He positioned the pins at the bottom of the ramp in her room (the old family room). Corey would wind up, release her grip and literally toss the bowling ball towards the pins. They had a great time and I have to say, she’s pretty good…she bowled a 180 for her first game! She needs some work on her spares.

We will have some exciting pictures for you tomorrow. One of our local churches, New London Presbyterian Church, has accepted us as their Project RAKE project. They are New London’s version of extreme makeover. Their team is building us a back/side deck with a connecting ramp for Corey to have a second exit from the house. It was a busy day having the team of worker bee’s here and we loved every minute. We can’t thank them enough for volunteering/donating their materials and time! Having this deck and ramp will be invaluable to Corey.

What a fun day we had honey. It was great to see you and JohnPaul enjoying each others company. You are so ready to get going. It’s evident that when you’re not busy you are really bored! That in and of itself tells me “You’re Back”! We will continue to think of new ideas to not only keep you engaged but focus on how to help you communicate. You appear as if you’re ready to burst out but no one can hear you. We’re listening honey. We will help you find your voice. As for tonight, it’s is quiet and peaceful in our home. Sleep well little one, happy dreams xoxo.