Better Late Than Never

The expectation is that a preemie is going to be a bit small, and a bit behind. Until they are two years old, the medical world refers to them by their "adjusted age"--the age they would be had they been born full term. So, when Robbie was 6 months old, his adjusted age was 3 months--he looked like a 3-month-old, and we expected him to hit 3 month milestones.

Well, it just so happened that when he was 6 months old--3 months adjusted--and had been home from the hospital for three months, we started noticing that Robbie didn't use his right hand and arm very much. We brought up our concern with specialists at a neonatal follow-up appointment, and they agreed. The right-sided weakness corresponded with the bleeding on the left side of his brain. We were referred to our local Early Intervention office, and Robbie started receiving Occupational Therapy. We thought someone would just come out and show us how to help him use his arm; little did we know we would first have to work on rolling, then getting into a crawl position--things that required him to learn to use that affected arm, and required us to learn how to teach and work with him.

So Robbie started hitting milestones, but he was very behind--even for his adjusted age. 

Robbie, 2

Dates and Milestones

(referring to actual, chronological age--not the adjusted one)

• 29 weeks: born prematurely (full term is 40 weeks)
• 6 days old: we find out about the brain bleed
• 3 months: home from the hospital
• 6 months: we notice lack of use of right hand
• 9 months: cognitive (mental) abilities determined to be age appropriate
• 9 months: starts receiving Occupational Therapy through Early Intervention program
• 11 months: Rolling
• 16 months: Commando crawling (his own special style, with limited use of one arm)
• 17 months: We start using the words "righty" and "lefty" to prompt Robbie to use both hands
• 18 months: Limited use of right hand when we hold left hand immobile
• 20 months: Crawling on hands and knees!! 
• 21 months: Crawling up stairs
• 21 months: Can only say "mama," and not even as a name; just a way to say "I want" Speech is very delayed (at this point we are hoping it is just because of how much he has been focusing on motor skills, rather than an actual speech problem)
• 22 months: Cruising furniture (sliding feet while standing at a couch)
• 23 months: Limited use of right hand, when prompted/reminded
• 2 yrs, 1 month: Standing independently in the middle of a room
• 2 yrs, 2 months: Uses 5-10 words; working with developmental specialist to encourage more speech.
• 2 years, 2 months: Can walk a little bit with assistance (holding someone's hands); starts taking a couple steps on his own
• 2 years, 3 months: Walking independently!! (wearing AFOs--Ankle Foot Orthotics. The brand name is DAFO, so we call them DAFOs)
• 2 years, 4 months: Occasionally uses right hand spontaneously--without being prompted. Limited use--meaning, we are extremely excited (and it takes a lot of work) for him to pick up a toy and put it in a cup.
• 2 years, 5 months: Speech suddenly improving rapidly 
• 2.5 years: Can walk without DAFOs (but he still uses them constantly)
• 2.5 years: No longer requires any specialists for speech. His speech is age appropriate (and very cute!)

I've been looking through a lot of medical records and notes to put this list together. I honestly cannot believe how far Robbie has come. There was a very long period of time when the thought of him maintaining a crawl position for 30 seconds seemed impossible. And we literally did not know if he would walk.

Until he did. 

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Streaking for Pediatric Stroke, Day 16