I don't "do" quiet very well...

For me, the worst part of Maggie's developmental assessment is having to sit there quietly.

Every 6 months, when I bring her to Children's Hospital of Philadelphia, Maggie is given a series of tasks to complete, the OT quietly nods her head and marks her paper, and says things like "Good try, Maggie".

And the whole time, I have to sit there quietly. When I know Maggie WOULD turn her head when the therapist calls her name, except she's too busy playing with the seat belt buckle on the chair they put her in. When I know she COULD say more than "dadadadada", but had to miss her morning nap for the appointment and when she's tired or overwhelmed she doesn't say much else. When I know that she CAN put the blocks back in the bucket, but she's too interested in the ID badge dangling from the therapist's neck. When I have SEEN her pincer-grip cheerios like a pro a hundred times, but she's just pushing them around the table because they just took that cool squeaky duck away and she's annoyed.

The second worst part about the developmental assessment is when the OT says, "I'm just going to step out and score her". That's when I sit there and over-analyze everything Maggie did and did not do. And I wonder which tests she was "supposed" to pass, and which ones were thrown in to "challenge" her. It's incredibly nerve-wracking for me. Good thing Magoo was too busy rolling around on the floor to notice. Especially since she refused to do so during the actual test.

According to the therapist, Maggie's cognitive abilities are absolutely appropriate for her corrected age. (Smart: check). Maggie's fine motor skills are also where they should be. (Detail Oriented: check). Maggie's verbal skills are on the lower end of normal. (Chatty Cathy: check). As an aside, I beg to differ on the "lower end" part of that statement, because I KNOW she said "doggie" on more than one occasion, and I have witnesses! Maggie's delays still lie in the gross motor areas like crawling, creeping, walking, etc. (Athlete: notsomuch). She is testing at a 7 month level, when she should be at an 11-12 month corrected level.

For this reason, the developmental pediatrician has recommended we start formal Physical Therapy, instead of Occupational Therapy. OT is a little more broad, and that focuses on all of Maggie's skills-- eating, fine motor, gross motor. But they feel that Maggie would benefit from the focus a PT can offer in addressing her gross motor delays.

The one good thing about the developmental assessment every 6 months is that we get to talk to my absolute FAVORITE pediatrician, Dr. Judy Bernbaum. Even though we only see her every few months, she knows Maggie almost as well as I do. She has always been the one to take charge of Maggie's feeding issues. She even requests that I call her monthly with an update on Maggie's weight and eating progress. I have a downright Doctor Crush on this woman, I swear. She is realistic, down to earth, intelligent, compassionate, non-patronizing, and experienced.

Dr. B was so pleased with Maggie's progress since the surgery! We all did a little dance of joy about her weight gain. She feels that, while Maggie's gross motor delays are "significant", her continued weight gain will mean the muscle mass and strength Maggie needs to get back on track. (Though she may never run Track, but whatever...)

Dr. B also helped tailor Maggie's feeding regimen with the GTube. In the next couple of weeks, once Maggie is one year "corrected" age, we need to stop feeding her infant formula. Dr. B gave me a prescription for Nutren Jr. formula, which is nutritionally formulated for older babies, and has more calories per ounce. This means we can decrease the volume Maggie is fed in the overnight feeding. Which may mean that she gets hungrier during the day. We will also continue to give her 4 bolus feedings during the day.

When I took Maggie back to Speech Therapy on Wednesday, Dahlia and I discussed that for the daytime feedings, we will offer Maggie baby food for 10 mins, then the bottle for 10 mins, then tube feed the rest. Dr. B was really pleased with this plan, and wants me to keep her updated on Maggie's progress.

So after a long and draining day, I'm sitting here on the couch typing an update. And Maggie is babbling away, using more than just one syllable, pushing herself with her legs and rolling all over the floor....

~Sara