from the rummage sack

Today the boys got hold of my camera. I would show some of the great pictures, but only three of twenty-something were not video. I still can't figure out how to get a video on this crazy thing. If I could, ya'll could see some great video of Ivey. But in these pictures obviously Knox was the camera man and Walker was up to no good....

A different day.

Ivey's roll now has a new component. She is pulling her knees underneath her and pushing up a little with her arms. Around the floor she goes and normally she has no preference to a soft floor over the hardwoods.

Notice her great tan and her two bottom teeth? She does have a mouth full of teeth. The majority are on the top and a couple are coming in out of the normal order. Having a cleft palate shifted her teeth a bit off of center on the top.
Ivey did visit the cardiologist this week. Remember this one was rescheduled from last Wednesday's catastrophe. Great news though. She weighed a whole whopping 13.5 lbs. Her heart sounds good. No problems from her little heart defect. Ivey will not see him again until this time next year.

And Sometimes Feeding Your Kiddo Looks Like This...

A simple sentence. No one said it to me in the beginning, but boy did that tube cause a lot of chaos. The NG tube graduated to the G-tube which morphed to a GJ- tube…. A brief history of Ivey's feeding tubes: *The NG tube was in place the first time I ever saw my daughter in the NICU. My only memory of her without a feeding tube is them placing her in my arms immediately following her birth. *The G-tube, well, that is a story within itself. That decision did not come lightly. Another hole in her. Another decision on our plate, but not really on our plate, it was apparent it was a medical necessity for her survival. Literally to give her a chance to live. A permanent decision. A 5am panic attack in the Scottish Rite elevator that happened to coincide with Dr. Meyers arriving at the hospital at the same time as me.... Our intersection in the elevator set the stage for the years to follow. From that point on, he knew I was a little nuts and a lot...

Sibling Secret Sauce

Siblings of kiddos with disabilities are amazing humans walking amongst us. They live a life, most often, in the shadows of their sibling who simply needs "more". More time. More direct attention. More of more. We have now come to a fork in our road. Our boys are young men, and, our daughter is a young lady. I'll be honest, I was uncertain what life would look like once the boys left this home, once they had their own time, in their own personal sunshine. We found out quickly once Knox left for college his freshman year what that would look like. And then, when Walker left, we knew what life would feel like in their absence. There was too much space. Ivey felt it. We get many compliments about the relationship the boys and Ivey have with one another. Hints here and there that, maybe, Matt and I had some secret recipe to parenting a household with a child that is very medically complex and a very complex communicator. This is what I can tell you - there is no re...

For the Love of Ivey

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