One step forward, two steps back.

When the girls were in the NICU, one of the nurses told me the very first day we were there, "Don't be discouraged if the kids have a bad day. Their stay in the NICU is a roller coaster and you have to be prepared for that from this day forward."

Not a day has gone by since my kids were born that I haven't thought how right she was. Never is that advice more apt than when you're dealing with a developmentally delayed, special needs child. I regularly tell myself, "This is a marathon, not a sprint." If I didn't remind myself, I would be spinning around in a bipolar haze, elated one day that my daughter reached a much anticipated milestone and then crushed the next when she encountered a set back. Special needs parenting is no place for sweeping dramatic generalizations. My kid is who she is and she will get where she needs to go when she's ready and not a second before. None of what she does is influenced by how much I stress out about it. Too bad, because if it was, she would be a baby Einstein by now!

Originally, the neurosurgeon told us we would be in PICU for one day, maybe two.  We're going on four days now. Thanks to that NICU nurse, I was prepared for this ride.

Harper's fever has abated but she still has the weird rash that keeps appearing and disappearing on different parts of her torso. The current thinking is that it is a heat rash, but no one is really sure. Her blood pressure was a little high and her heart rate a little low. So we had another head CT to make sure nothing weird was going on. It was normal. So nothing in particular is keeping us in PICU besides a general feeling that she needs some extra eyes on her and that's just fine with me.

 Then, there's the feeding issue. Sigh. Our good friend NG tube has returned. The doctors explained that by now they would want Harper eating close to the same amount that she would be at home. Well, she wasn't even close to that. So in went the tube. The good news is she seems much calmer and satisfied now that she has some food in her belly. And, she got so pissed off when they were putting in the tube that she lifted up her left arm twice to try to pull it out! Now I know what it's going to take to motivate her in therapy...

We'll try again with the bottle and baby food in the morning. The tube is only temporary...the tube is only temporary...the tube is only temporary...click click click...the roller coaster car climbs up the track.

In better news, the swelling in her scar has gone down and she's able to partially open her right eye. And no more seizures...wheeeee! Down the roller coaster we go.