With rough nights still in the mix, the days have been hard but rewarding. Karsen still isn't sleeping great, wakes up ready to roll at 3:00am. I'm not sure if it's because of the taper of the prednisone or if it's just from the side effects from the prednisone, either way I'm ready for him to be off them. It's going to take us a total of 4 weeks to get him off it completely. Oye! Lets hope the sleep thing wont be the whole 4 weeks.
Karsen had his usual OT today. Today, he had three people come. A reevaluation of sorts I guess. I'm not quite sure what was going on with Karsen but when everyone got there he had JUST woken up from his nap. He was happy. But when I sat down and he saw everyone he freaked out! Started crying and screaming. No clue why. After some coaxing he calmed down and was able to do some work. Not as much as I would have liked but still some work. Mary Beth, his OT, was shocked at how different he was just in the last week (clearly part of tapering him off the prednisone) he was so much more alert, talkative, and so much better at balance control. I can't wait until 4 weeks from now! The team of people there were talking about Karsen and how much better he was doing today, then said that is shows how hard I work with him when they aren't around because of his progress. I wanted to cry and give them all a big hug. I think as parents we always worry we aren't doing enough, as a parent of a special needs child it goes beyond that. I always thing everyday "should I have side sat him more? or should we have worked on rolling more today?" and at the same time worrying I wasn't playing with Karter enough. Mary Beth had also told me Karter was handling the sessions great! and told me "you're doing an amazing job in making sure each child gets enough, it shows" tears of joy over here! You guys all made my day! Not to mention Sara, his teacher, brought me some yummy smelling soap.
Ok, so the lack of sleep is not the worst thing ever. I will survive. (hopefully ;-) Hearing that made my day, heck it made my week! I feel so blessed with the team of people supporting my family. It truly does take a village to raise a child. Love you all!
Since Karsen's first birthday is this month, I thought I would post a newborn photo. Check out my sweet little man. Can't believe that was almost a year ago!
