We were up super early this morning. I woke up at 4:30, finished packing and got us ready. We will not be returning to our hospital room because when we arrive back at Shriners they will put us right across from the nursing unit. So...that means packing up, and it’s amazing how much crap you [...]
So tomorrow is the day we've been dreading since our last big surgery three years ago. We will start preparations tonight and we will be the first and only patient for our doctor tomorrow. I will head over the the other hospital at 6:30 to register us as inpatients and take care of all the [...]
Well Known Fact(ish): most medical mom's (maybe most moms now that I think of it) appreciate a good glass of wine. My favourite vice is a nice Cabernet; although lately I've really opened up to a good Shirazzing. By lately, I mean pre-hospitalization because for some reason that makes no sense to me (and many [...]
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 [...]
We've had a pretty amazing year, but I have had some worries. The most significant worry this year was and is "the lump". I started noticing "the lump" in about November/December. I think it was there before that, but to be honest it didn't really start to freak me out until about February. It started [...]
Ben's recovery from surgery a year later.
So we got home Thursday, and I was able to enjoy some Thai food and wine with the family. Then I had the BEST SLEEP OF MY LIFE! It's so strange to wake up and not have large groups of people looking at you. I may need to buy some Grey's Anatomy posters to hang [...]
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 [...]