Saturday, October 23, 2010

Boys Will Be Boys

Crew babbles constantly, but makes only two intentional, specific, spontaneous, meaningful sounds that we can pick out. He has been making car rumbling noises, as so many little boys do. The other sound? Well, he's been playing with his siblings a lot and I almost wet my pants when I realized what his new sound was: light saber sound effects. I kid you not.

Wednesday, October 13, 2010

Just CRAWL, Why Dont'cha???

Crew shuffle-wiggle-crawled this morning. He even moved his legs. Right, left, right, left.

Then he was done.

And I wiped away a proud little tear.

It was a beautiful sight to behold.

Widdle Water Wiggler

This little critter loves his bath! He soaks the entire bathroom with his splashing antics every time.Blowing bubbles.
Silly little fishy.

Tuesday, October 12, 2010

Critter Eats

Critter now eats RICE. Critter eats rice with tiny bites of Apricot Chicken and lots of sauce. Critter eats it very well, very quickly, and screams for more.

Monday, October 11, 2010

Gardner Village

We braved the rain last week with friends to visit the witches at Gardner Village.Toddler friends, all born within a few months of each other.
And a good time was had by all the crazies.
I wonder if these witches have any vampire friends...

Saturday, October 9, 2010


Crew is experiencing success in the nonsensical nightmare that we call mealtime.

This week he branched out successfully to four new textures! Well, they aren't exactly "new", but this week he handled them like a pro!

1. Quaker oatmeal. He ate half a package without puking!

2. Bread. Piece, by little piece, he ate an entire slice of wheat bread this weekend. My friend Melissa and I have long envied the mothers of sandwich eaters. Perhaps there is a PBJ somewhere in my future after all.

3. Pumpkin pancake. He ate almost one whole pancake. No puking, no gagging.

4. Minced spaghetti. He slurped down a good-sized bowl of spaghetti without attitude and most importantly, without "incident".

Tomorrow we attempt apricot chicken. In other news, this kid is going to be crawling any day now. He's sooooooooooo close.

Thursday, October 7, 2010

Widdle Fishie

Why does The Little Prince take so many baths?

a. He generally has food down his neck, in his hair, and coming out of his left ear.
b. He frequently has a funky fragrance that needs freshening
c. To keep him contained and less destructive (out of toilets, garbage cans, cupboards, away from stairs and the underneath of beds)
d. He loves it.
e. So I can see him blow bubbles
f. It's good for his physical therapy because he can't tuck and roll if the water is deep enough. He's more inclined to attempt crawling (or swimming).
g. His nekkid bum is too adorable to keep covered all the time.
h. All of the above.

Tuesday, October 5, 2010

Comprehensive Eval

Today Crew had his comprehensive yearly evaluation with Early Intervention. It was done by our PT, which was convenient because she knows Crew extremely well. That came in particularly handy when he refused to do things that she knows darn well he can do: She asked him to put blocks in a jar. He picked up the block, dropped it half way, stared her right in the eye and quickly withdrew the block to toss it across the room. Repeatedly. He is willfully naughty and as sassy as a non-speaker can be!

His adjusted age is 20 months. After the 90-second age-equivalency quick observation by our neurologist last week, there were no surprises this morning. Well, no bad surprises, anyway!

Gross Motor
8-month development. We knew that. Once he is crawling he'll be at 12 months. After that is walking!

10-month development. He's not making any "words" that we can distinguish and he should be making at least a few. It may very well be that we're just not realizing that he's being intentional and specific with some of his babbling.

Self-Help Skills
14 months

Fine Motor
16 months

17 months

Social and Emotional
24 months!! If you've ever had the opportunity to bond with my shameless flirt, you won't be surprised. He's always been advanced in that area. The NICU nurses were always amused and bewildered at how much he loved attention and eye contact even at 2 pounds. He has mastered the one-eyebrow lift combined with a half-smirk; he's a dreadful tease. He has absolutely no stranger anxiety anymore; I was actually quite concerned about this, but all camps say that this is completely fine, when taken in context with the rest of his personality and development.

Overall, I'm very very pleased. He continues to qualify for services, big surprise. We'll keep our physical therapist and add a play-skills/speech teacher. His progress is slow, but it is consistent. He is becoming more curious and adventuresome, which will only increase the speed of his development. His months of languid contentment are over and it's really exciting.

Onward and upward!

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.