11B. Surgery Day Recap

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 [...]

10. Tomorrow’s surgery

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 [...]

9. Cute from the Inside Out!

So...I was sitting with my amazing nurse practitioner today, and we were scrolling through Ben’s CT scans. As the images were moving past, me (being the smart ass I am) said ‘I think I can see what the problem is. There is a puppy inside him’. We both looked again and burst out laughing! Hmmm...no [...]

5. Respect the wine glass people!

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 [...]

4. We can get out of bed!

We were transferred to Shriner's Monday. It was a crazy, busy day. Once we arrived, I had some paperwork to do and Ben was examined regularly to ensure that he was doing well because he had just gotten off anesthesia. So far, so good. Ben has 5 screws (posts/pins) installed into his head holding his [...]

3. Well…that went well!

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 [...]

1. Here we go again!

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’re Home!

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 [...]

Uncertain Beginnings Part A 

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 [...]