A girl and her beads

I am adding two pictures to this post. These are the new Christmas stockings. The red dots above their names are their names in BRAILLE.

This is our Elf on the Shelf 'Tinko'. If you don't have one, I seriously suggest you look in to them.

Now let's move on to my sweet girl and her beads.....

Just wanted you all to see how well Ivey's motor skills are developing. She is gaining such coordination. We have attached several objects to Ivey's carrier for her to play with. We have been doing this for sometime, but she has really started showing preferences over certain toys. She is into ribbon right now, maybe it's the silky feel. We attach objects, mainly household objects, with various textures to the ribbon. Without a doubt, her favorite object is her blue beads. It amazes me at her dexterity to shuffle through the web of handing objects and ribbons to find her blue beads. (I guess it is not much different than any of us shuffling through the dark abyss of our purses looking for change, keys or cellphones. We do every day without thinking about it and find exactly what we are looking for.)

This short little clips shows so many wonderful things happening in Ivey's life right now. She has turned another corner. It is great. To the rest of the world, this is just a video clip of a baby playing in a carrier. To me and you it show one happy baby capable of entertaining herself. It shows the connections in her brain firing away. Most importantly, there is one smart little cookie who knows exactly what she wants. She must be a girly girl at heart.

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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