The Annual Trip to Hopkins

For two days, our world revolved around waiting rooms.  Waiting rooms to get to different waiting rooms and then waiting again for test results and doctors.

It was totally worth it.  Best doctor appointment results in a long time.

We were a little nervous meeting with the cardiac surgeon -- after the Summer of 2011 medical disaster, we had no idea what he would say or whether all those surgeries impacted the rest of the cardiac situation to a point that we needed more surgery.  There were a lot of unknowns.  In the end, Hubby is doing okay -- yes, there is an aneurysym but we knew that already.  We know it will have to be fixed,,,eventually.  For now, its stable and he can plan for a year without surgery on that!  We are cautiously optimistic that we will get through an odd numbered year without a visit to the OR.  See that's where the cautiousness and nervousness comes in --- since I have known Hubby, we have had some sort of major medical issue or surgey in each of the odd numbered years:  2003, 2005, even added one in 2006, 2007, 2009, 2011, and now 2013 is just around the corner.

(l-r 5 years old, 2 years old, 8 years old)
Grace got through the appointments with a A+.  NORMAL aorta measurements.  Perfect heart rate at rest and in exercise.  No scoliosis.  Seriously, the doctor called her perfect with completely normal measurements.  For a Marf-Mom, those words are amazing.

Really, the only new issue is the official diagnosis for Hubby --- dural estacia.  Basically, his back has been hurting and bothering him the last few months for a real reason -- not just being stressed or tired or sleeping funny.  So now we are on the path of finding ways to manage the discomfort and pain.  There is no real cure for this issue; just management.

For all the doctor-talk we did, we did have fun.  Even the hospital waiting rooms were fun......because SURPRISE, our Marf-Friends were there too.  We didnt plan it but we all managed to have appointments on the same day.  Even more miraculous when you realize that we live in 3 different states and have only been all together in person one time before.  But even so, it was like a Marf-Family reunion.  Kids playing together, parents chatting.  Even our doctor was enjoying the reunion since she has known all our families for years.

This year, I felt good about the appointments.  I was confident in the doctors' assessments and for once in a long time, I feel good about Hubby's health.  It's never a smooth and easy road but one that we have managed to navigate pretty well.  And in all seriousness, having our Marf-Friends out there, ready and willing to share tips and advice and resources, really helps -- just knowing that there is someone I can email or text any day to talk about these unique challenges and sometimes who can just say ""yeah it sucks" when things aren't perfect.  Love you for that Maya!

The trip wasn't all doctors.  We did find time for dinner at Hard Rock Cafe, an impromtu visit with Santa at the Inner Harbor, and had the most amazing breakfast that Hubby's cardiologist would NOT be porud of but tasted soooo good!

Another year and we will back to visit Hopkins and the docs again. For now, I am smiling at our good reports.

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