MonthOctober 2014

Mid-October 2014

Well into my favorite month of the year! Last year Heidi’s diagnosis made the beautifully fiery colors of the turning trees look like torches of destruction; we’ve come a long way since then!Try to tell me this sweetie pie is suffering miserably, as we were so resoundingly promised!:


Heidi did have a bad cold over the weekend of the 3rd, but pulled through. I managed to slip away for couple of hours that Saturday the 4th to meet up with my big kids at the bluegrass festival in Raleigh (awesome music!)


Heidi recovered from her cold and was content throughout the week, but it was a few days before we got her oxygen sats up to the high 90s consistently.

Heidi got her new stander the day before she got sick; she may have to be a storm trooper for Halloween!


Here’s Heidi playing with the neighborhood girls:


Saturday, October 11th, was both the annual SMA Walk’n’Roll in Raleigh and Cassie’s birthday; it was quite a hectic day! I decorated the deck for Cassie’s party before the walk, we went to the walk, then immediately had to go into wild-preteen-girl party mode upon our return home! Here are some pics from those events:


Heidi just being our Cutie Piedi:


Finally mobile as a family!

It’s the last day of September and Heidi continues to make small gains in strength and motor skills. She briefly sat with minimal support last week while working out with her physical therapist. She has also been holding her head up better and moving her trunk more! Here she is working out with her therapist:DSCN0842

Now that we have our van, we are finally mobile as a family. In the last weekend of this month we visited family in Conover and Morganton. My brother Chris has suffered from meningiomas (benign brain tumors) for about four years now. He has them as a result of radiation he received as a child for leukemia. He has had several crainial surgeries in the past years and has lost one eye. He joined us for dinner at my mother’s, but he grew tired and had to leave shortly after dinner. He feels a connection with Heidi in sharing a terminal childhood diagnosis.DSCN0853DSCN0858DSCN0861DSCN0867
We also visited Papa and Gigi, my father and stepmother near Morganton. Heidi, however, was so tired she fell asleep before picture taking. Gigi gave Heidi a soft doll with “Heidi” embroidered on her skirt. The doll is lightweight and has several interesting textures for Heidi to feel: she loves it!DSCN0883DSCN0890
This last picture is of Heidi enjoying her bananas like any other baby, by smearing them all over her face, hair, and clothes!

That’s about all we have for this update. Family and friends, take care!