Heart Check - two thumbs up

I have something called muscle fibre disproportionate myopathy which basically means - my muscles have typical initial strength just limited endurance.  I was born a floppy baby, it was concerning to my doctors and parents but my development was fine so there was really no intervention. I was followed yearly but my parents didn't have me do a nasty muscle biopsy. Other then being a small woman with not a lot of endurance my life has not really been affected. I have just slightly adapted really hard things and have clearly never taken up marathon running. Life has been good!

 

  Before we started trying to have children I decided it was important for me to find out more about my muscle condition if I could. I had a full work up and I did that nasty muscle biopsy, met with geneticists to have genetic counselling. I was told the chances of us having children affected was super slim. Low and behold after 6 years of trying I was able to conceive and wouldn't you know that supposed slim chance produced our delicate woman Amelia Ann and then two years later Stella Charlene.  During my pregnancies my heart and uterus were followed more closely then the norm but my body worked awesome (aside from the severe nausea I experienced).  After our sweet delicate baby Amelia was born we were referred to the Glenrose Hospital where they followed her bi-weekly for almost two years. What an amazing resource they were, with common sense suggestions for encouraging and adapting things in aiding her physical development. Simple things like where to place your hands to give the best support for sitting, learning to walk tips and the best was that we would get handouts with pictures from the day or drawn out stick person diagrams. Sooooooo good!  We still adore our physical therapist Lucia.  We now see her and the team only once a year.  When Stella was born she was clearly less affected so hasn't been followed by the Glenrose, however we used the folder full of awesome handouts so were able to encourage our Stella Bella the best way possible.  We also always bring her along to Amelia's yearly visits...just so they can see her :)

 

(Just a bit of history before I shared about our heart checks!)

The heart muscle is a MUSCLE so has always been a concern for me and now for my girls.  I am followed every 4 years and them every 2 - as a precautionary measure.  The day these pictures were taken we had hit the Stollery Children's Hospital for double ECG and Heart Doctor visits.  The girls were troupers and although I wasn't really concerned I had a moment as we headed back to our vehicle.  A moment with tears in the elevator actually.  The appointment went great, just as I expected the girls have great little tickers and the specialist said to come back in two years. The walk from the elevator took us past the school rooms, the oncology aka cancer wing for children and just walking around you walk by many little people facing various battles.  I thought of my powerhouse niece Jacey who has been there numerous times, for different things.  We are beyond lucky to have this amazing place so close. As I walked down the hall by the school rooms they had framed poetry written by patients.  I think the tears were a combination of reading those poems, a great apt for my ladies and memories of my sweet Bird Girl!!  My elevator tears caused me to say a little silent elevator prayer of thanks for a few different things.

 

 

Naturally a doctors visit requires some kind of treat after so we opted for some mini blizzards from DQ.  Classic goodness!  Likely the last day till spring were we could eat ice cream outside, it was 15 c on this day.