Tuesday, August 26, 2008

It is what it is

Back when Natalie was 3 months old and in the hospital for pneumonia, I was struggling each morning and evening with the weigh in. Each time a nurse came on duty, she would weigh Natalie. I desperately wanted Natalie to gain weight. I was working so hard to get every last drop into Natalie (this was before the g-tube). But it was rare that Natalie gained weight...she would drop a few ounces, then regain where she was. She stayed near her birth weight for three months...basically, she didn't gain more than a pound until she got the ng-tube (a temporary tube down her nose to her stomach) and then the g-tube at 4 months. After the ng- and g-tube, she started growing, because she wasn't aspirating what she was taking in (aspirating the milk into lungs meant her body was always fighting to keep healthy lungs, and couldn't focus on gaining weight).

My mantra to deal with the disappointment of the weigh ins was "It is what it is." I was learning to accept Natalie for who she was, and who she was going to be. No amount of me telling myself in my mind what she should be able to do, or pushing her to do more than she could, would help her grow. It actually probably made things worse.

Yesterday we got the six-month report card on Natalie's progress from the therapy clinic. This report is especially interesting because it's the one that the school district will review when deciding what placement and services Natalie will receive after she turns 3. I'm proud to report that I have finally accepted this report as "It is what it is." Caryn, Natalie's PT, warned me that they would accentuate Natalie's shortcomings to justify additional services, and they did!

I believe they graded Natalie fairly on the standardized scores (several of her therapists said they thought she would do better...I think Natalie's smile always makes people think she's doing more than she is), but in the write-up, they accentuated areas she needed to improve. The clinic asked for an additional hour a week of therapy, and Tom and I are pleased with that because we know Natalie benefits from the therapy, and she definitely loves the therapy.

So here are the scores, and no tears over them (some show only very minor improvement from six months ago, but we know she has made a lot of improvement that doesn't register on a test). Natalie is 32 months old chronologically and scores:
Gross motor: 10-15 months
Social/emotional: 21 months
Cognition/play: 20 months
Receptive language: 21 months
Expressive language: 9-18 months
Fine motor: 14-21 months
Adaptive living (feeding, toileting, dressing): 17-21 months
Sensory processing: typical...there's that weird word again!

Walking was the big goal that was met this time, and we're excited for the new goals, like following a 2-step related command; using "mama" and "dada" meaningfully; progressing with PECS; imitate using a pretend object; reciprocal play with one or more children; standing on one foot; walking up steps; using scissors; removing her clothing and putting on her clothing with assistance.

Go Natalie! You've come so far and you are determined to not stop yet!


Kelly said...

WOW---you go Natalie! I look at those scores and hope that we can achieve the same things. It is great how much she can do and will do. You are so right to put it all into perspective. It is what is and we have to make the best of it. Natalie sure is making the best of it!! :)

Precious picture...I could just eat her up!!
Kelly Weekes

Terri H-E said...

Sounds like a great year to me! You go, Natalie. It's kind of funny - I barely glance at the scores anymore. They are "code" to the therapists and staff for what they can justify for Addie going forward, but really mean very, very little to us. I ask for the bottom line first and then look at their reasoning later - the measurements. Tear-free assessment reading is a great feat (especially for such a young little cutie as yours), Cindy - cheers to you!

Missy @ It's Almost Naptime said...

Just popping over from Rocks. Have to ask, what did she rate on the cuteness scale? You didn't mention so I think it must be off the charts!