You never get 'used' to it...

So we wait, which has become part of this crazy new normal that we have been living for the past few years. Honestly, I am tired of the waiting game, but we can we do? Now it is 11:30 pm and I am trying to decide if I should try to nap or stay awake. Meanwhile Matt is busting it to get work done because he suspects what the night is most likely to be like too. Just another part of our normal.

Ivey had two seizures tonight within about fifteen minutes of one another. Her Diastat has been administered. So now we wait. Normally three to four hours pass and then the next bought of seizures begin. They last until we get her to the ER and begin an IV regimen of anti-seizure medications. That on average takes right at an hour - seizure included. Imagine a seizure lasting an hour.

Just days before Christmas Ivey had a round of seizures. That night we made two trips to the ER, the second being transported via ambulance.

So now we are waiting. Thank goodness Camille is here, Ivey's nurse. Awesome nurse. She arrived at 10pm and will stay until 8am, which is our normal night nurse hours. I can't imagine not having the nurses here and trying to play the stay awake game every night, each week, month in and month out - for years. We are tired now, so thank God for our night nurses. They are our watchful eyes who love Ivey too.

Ivey's seizures do scare me, but for the most part they are not life threatening. However, in pure Ivey fashion, an hour long seizure is abnormal and comes with precautions. Also having seizures on the daily dose of medication accompanied by the high dosage of Diastat that is administered is not typical, but name one typical thing about sweet pea that is 'typical'. God broke the mold when he made Ivey.

As atypical as the length of Ivey's seizures are, they are still just seizures. And dare I say that we are 'used' to them, it is more like we have learned how to prepare and brace for them. Instead of running around like chickens with our heads chopped off, we run around gathering and organizing. Right now there is a bag extra clothes packed, Ivey's pink bag is packed, oxygen tank is ready, suction machine is out, and we are waiting for the cue from Camille that she is seizing. We will call our neighbors to come over to sit with the boys. We will put Ivey in the car and go.

We have a set plan of action. Included in that plan are some amazing neighbors who take the 2am phone calls and come over to sit here with the boys while we go. Like we have said a thousand time before, we are blessed.

It's like a well oiled machine around here. Us, Ivey, nurses and neighbors. The docs and nurses in the ER have come to know Ivey and set up shop in preparation for her. Ivey's what we call a "frequent flier" in the ER. So get ready ER, we may be dropping in sometime tonight for a short visit.

So whenever some one says "God won't give you more than you can handle", they are wrong. Alone we could never 'handle' this. So he gave us great nurses, doctors, and neighbors. Together we 'handle' Ivey.

Say a prayer for Ivey and watch her video with Elmo and jingle bells. They remind us how awesome this journey is+