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Today Ivey had a terrible seizure. After approximately a hour and fifteen minutes of non-stop seizing -even after Diastat- the great team at Floyd finally got her under control. They are a pretty amazing group of people.

Now Ivey has been admitted over night into Scottish Rite to try and nail things down. Just moved from the ER onto the floor. Feels like a second home.

Just when it feels like we have these crazy seizures tamed - wham - they rare up again in full force. Despite that - Ivey has some amazing little angels in her life.....her brothers. Today this one hit mid-afternoon. Ivey's brothers are aged well beyond their years - almost too responsible, grabbing the Diastat, lugging the suction machine, helping pack up the car. Not to mention Ivey's other angels that took the boys, rearranging plans, literally in a moments notice. The one who sat with her in the ER. And the angel that she asks for even when he's not there - her Daddy.

We (Ivey and I) love you all very much and miss you. Ivey is sleeping sound. The nurses and respiratory therapist just wrapped up meds, so hopefully I am heading for a nap. Looks like there is an infection so they started an antibiotic via IV. Hopefully she will be home tomorrow.

In the meantime....

I really hope the Tooth Fairy doesn't forget to visit Knox tonight.....he pulled another tooth today.

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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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