Monday, March 31, 2008

Peter - Carepage - March 31st, 2008

Sorry it has been a while - March hit hard and furious and I am so glad April starts tomorrow! Fortunately Peter (knock on wood) stayed healthy - but the rest of us have been beat up! John and I officially got the flu, Alexandra-Michael-Tommy officially got Strep, we had colds, tummy stuff and everything else hit us all at the same time. Add on the stress and I have not been a pretty sight! My father gave us quite a scare a couple of weeks ago with emergency surgery, a stay in the ICU but fortunately seems headed down the road of recovery. Only now are we finding out exactly how close we came to loosing him and we are so thankful he is strong and able to pull through it. Through all the challenges of March - Peter came through it healthy and with one tooth! He finally got his first tooth!! We think his gums must be sore because almost over night he decided to stop drinking....and if there is one thing that I don't handle very well when it comes to Peter - it is him not eating well. So, yes, I'm stressed out about that too. He's done this before and then bounced back so for now we are just watching him closely....being the anal parents that we are Peter's every feed is logged in a notebook so we know exactly how much he ate. So please - a few extra prayers for Peter to stay healthy, get through the teething and eat well. Peter's next echo is at the end of we are anxious to see how that goes. He gave John and his therapist Kerry a fright a few weeks ago. They tried checking his O2 levels and couldn't get a reading out of the 70's. However, we took several readings after that - all in the 90's - so we are hoping it was just the probe on the machine that wasn't getting a good read. Peter is still on oxygen and continues to treat his tubes as his best friend - playing with them constantly. Of course that also means tearing it off his face so his cheeks can get quite sore at times. Peter continues to get stronger and stronger. He is a total wiggle worm now and won't stay still for a second! Even when you are holding him he twists around to make sure he isn't missing anything. He loves playing with the kids - especially Michael who can make him really laugh. Michael will give him a kiss and Peter throws himself back in a fit of laughter and then leans in for another kiss, then throws himself back....and they can do this for ever. If Michael tries to walk away Peter will twist until he sees Michael and will wave and squeal until Michael comes running back to give him another kiss and we start all over again. Maybe Peter also got my OCD nature? The exciting news for us is that Patricia Winders - a pioneer in physical therapy for kids with Downs is now up at Children's in Denver. She is on every video I've watched, and written every PT book I've read, and quoted in about every other DS book I have. Well, she is now local and will be doing an assessment on Peter this upcoming Friday. Being the dork that I am of course I am taking my book so that she can sign it! Exciting is that Peter's physical therapist in Colorado Springs - Kerry - is coming up with me so we can both hear what Patricia has to say as she assesses Peter. I am so looking forward to meeting her!! Peter is finally having his sedated hearing test this week and we need to schedule his eye exam. His eye muscles are weak - so I assume we will need to do patches or something with time. They take turns - so that is funny - one day one eye will tend to roll into the middle and the next day the other eye will. I thought I was struggling with my left and right until I finally realized he really does alternate eyes! He is big and cute and active and unfortunately unphotographed at this moment. He didn't strike a decent pose for recent pictures - so I need to try again and will post them to the carepage as soon as I can. Better run - take care - and please extra prayers for healing and health for the Krause house & my parents. Hugs! cath