Despite a way too early start, the day has gone great so far! I was up at 4:30 - getting ready and packing up. I work Ben up at 5:15 to have some juice and get him in the shower. We bathed him last night in chlorhexidine and washed his hair with it, but I [...]
Well...I definitely feel like an update is in order...it's definitely me - not you! When September hit this year - I knew I was going to be busier than ever, and I was right...so let's start catching up. So, just to refresh...in August I posted about Ben's lump on the back of his neck. We [...]
Ben's recovery from surgery a year later.
Well...it's been a crazy busy 24 hours, but we are home. I'll fill you in on some of the details. First off, we did our X-rays on Tuesday morning to see how Ben looks standing up. The good news is that his thoracic (chest) area looks really good. It's looking pretty straight. His neck is [...]
When Ben was born, it took us about 4 days (I think) to get diagnosed with Goldenhar spectrum or syndrome (depending who you are talking to). At the time, I didn't really know what that meant, I only knew that it affected his eye, his ears, and his spine. We were transferred to our local [...]
Last Monday Ben could not grasp your hand with his left hand and squeeze it in a way that you could discernably feel it was being squeezed. His head was also sitting in a twisted way on his neck that made me shudder and think..."oh my God - we've made it worse". He could not [...]
I'm really scared of getting bandages taken off. I don't like bandage takings off more than surgeries. My mom says it's because I am a hairy little monkey. Last time I got them off I cried for a long time. My nurse said that she would do her very best to take them off nicely [...]
Ben is getting stronger day by day. We have now renamed his left hand 'Lazy" and Ben has to reach up and touch some hanging gorilla/bear to pay for special treats he wants...ie: ipad = 5 Lazy touches. It seems to be helping. We have shortened our traction times to make it more manageable. Today [...]
First of all - just a little housekeeping about the blog - people have been asking me and you DO NOT need a wordpress account to follow the blog - just ignore the line that asks for that. You can do it just using your email account. If you can't get that to work, you [...]
This morning when I got up the doctors were in my room. They looked at me and made me do some of my muscle tests. One doctor said I was a bit weak on one side and saw that my neck doesn't really move. It was really hard for me to squeeze his hand. He [...]
Crooked Journey 