Friday, October 1, 2010

Never Naysay Normal

Today I took a trip to the Neonatal Follow Up Clinic for our annual fear-fest. I was dreading our appointment with the neurosurgeon after our last visit. I was dreading the entire experience, actually. I never look forward to spending long hours in a waiting room bursting at the seams with intact twins and triplets.

Today was full of pleasant surprises!

#1. There was only one set of twins and they were 4-year-old fraternal twin girls (not sucker-punch identical boys). We happily, quite painlessly visited for a while.

#2. I met Diego in person!! I couldn't believe it! We've stalked each other's blogs for so long that it seemed very natural to meet Veronica and Diego face-to-face in the waiting room of the follow-up clinic!

#3. I met Grayson! UVRMC people know Grayson because he was the one everyone always referred to during Crew's treatment because they had similar bowel issues. He was Crew's ostomy predecessor. I had seen the name Grayson written on the intake sheet. I looked around the room for the age I suspected he might be now. I picked out a little blondie and went out on a scrawny little limb to ask if this was Grayson, the Grayson. It was! What a small world!

#4. Dr. B. (the neurosurgeon) was far less gloomy this year! She was actually very nearly optimistic for once! She didn't once utter the words "Cerebral Palsy". In fact, she was extraordinarily pleased with his progress.

It has been about 9 months since our last visit and he has progressed about 6 months developmentally. I was discouraged by that, but she was thrilled. She mellowed out and started telling me about the babies she really worries about and all the ways in which he differs. She went so far as to say, "Normal is not off the table."

According to her brief analysis, his gross motor skills are around 8 months. Everything else is between 11 and 14 months. She said that the fact that his "everything else" is ahead of his gross motor skills and that his global development continues to progress steadily (albeit very very slowly), are all very encouraging signs. She emphasized that he is still very young, of course, but that he is showing very positive cognitive signs, even if they are delayed. She is most concerned about his gross motor skills, but she's not even panicked in that department. I told her that my private goal is to have him walking by the time he is 4 and she agreed that is probably a reasonable goal and a sensible expectation. She doesn't anticipate that he'll be any kind of great athlete, but conceded that she could be dead wrong about that.

#5. Our private opthamologist took over the follow-up clinic, so we saw him this morning. Crew is officially discharged from preemie eye concerns. No more follow-ups for his peepers!

#6. We met with the nutritionist. That was was good and bad. It was "Good job, mom. Keep it up." So the good news is that I am seemingly doing all the right things. The bad news is that it's not working and he's still not willingly eating enough to grow. They submitted a request to hopefully have a feeding therapy clinic with the legendary OT Annie in November or December sometime. She also mentioned that it's really normal for these micros to have very poor hunger cues and to be very active physically. That's my Crew!

All in all, it was a really positive day! Then I visited with an old friend who kept Kinley and Tanner entertained all morning. Happy Friday!

I was telling some friends the other day how managing Crew's affairs is an exercise in mental balance. I have so many "specialists" offering their opinions regarding his treatment and prognosis. "Why aren't you worried about this?!! Why are you so worried about this?!! Calm down! Get busy! Relax and give him time! Why aren't you enrolled in this rehab facility? You're doing great! You're not doing enough! You're doing too much!" I spend so much time defending Crew's right to take his time and just be his awesome Crew-self, that sometimes it backfires. For example, we missed the fact that he hasn't grown in 9 months because I was so busy being proud of him for progressing to swallowing without puking and eating solids twice a day. Oops. It's not a perfect plan, but neither is anything else. All I can do is follow my heart, shove the specialists aside when they can't agree, take their advice with a grain of salt, sort through our options carefully, and do the best that I can.

Oh, and change stinky diapers. Right now.

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