News from Livelyland

The good:

Lively is walking! Two weeks ago, Annie was popping bubbles in a long strip of plastic bubble wrap that came in a package. Lively picked up one end of the strip and walked across the room! He was completely unsupported, but I don't think he knew it.

A few days later, he picked up a drumstick and did this:

Within a couple of hours, he figured out how to walk without a drumstick! We were, as you can imagine, beyond thrilled.

The bad:

Sometime this last week, after being able to walk for only a couple days, we think Lively fell and hurt his left foot. His left side is his weak side due to his stroke. No one saw him do it, and we can't be sure that's what happened, but around a week ago, he just stopped walking. He will stand and hold our hands and walk around, but he favors his left foot. He just got a taste of walky-freedom, only to lose it within days.

More bad:

A week ago, Lively was seen by a developmental and behavioral pediatric specialist. This doctor had come very highly recommended by Lively's neurologist, and I can understand why. She seemed very knowledgeable, explained things well to us, and seemed very thorough. The following comes directly from her note:

Activity Level: Activity level appeared appropriate for age. He did not appear to be hyperactive.

Attention Span: He was able to remain in attention for less than 30 seconds with developmental task. He sat in the chair independently for the first five minutes and then would not even sit while on either mom or dad's lap.

Gross Motor: He repetitively makes a fist with his right hand and holds it and brings up to his mouth. There was some mild finger flapping noticed. He also rocks frequently from his left to his right foot and shakes his head repetitively. He seemed to enjoy standing, going from a sitting to a standing position while sitting on his father. He also demonstrates "W" sitting, which is suggestive of ligament laxity.

Fine Motor: Lively was not able to put coins into the piggy bank. He was able to pick up a spoon, though at times he would move the spoon about three times before picking it up. It was unclear if this was a repetitive motion or if this was because he had a difficult time picking it up. He also tried to use the buckles in his stroller to buckle himself in; however, he was unable to do this.

Speech and Language: Lively does a lot of jabbering and humming. I also heard him say "mama" during the examination. He does demonstrate some communicative intent but he is not always trying to have a conversation. He did smile imitatively and used sign language for more with his father. I also heard him say "dada" during the exam. He vocalized both vowels and consonants.

Mood and Affect: Overall, Lively was quite pleasant and engaged well with the examiner. He was frequently smiling and was very easy to soothe him.

Play: We did see multiple episodes of motoric play by Lively, including bouncing up and down on his dad's lap which appeared to be stereotypic at times. In addition, he demonstrated some repetitive play characterized by flicking and turning of toys, and repetitive banging of spoon on a chair. He demonstrated minimal symbolic play.

Cognition: Cognition appears to be delayed based on the quality of his vocalizations.

Relatedness: Lively demonstrated intermittent eye contact (preferentially directed to his caregivers), and demonstrated some signs of social connectedness as follows: he did come up to the examiner multiple times and smiled. He also took the examiner's hand at one point and he was constantly going back and socially referencing his parents. He also hit a drum with his mother when his mother initiated the game, and then gave her a hug. He played peek-a-boo with dad holding blocks in front of his eyes. He initiated a kiss with mom. He climbed on to the examiner's lap, held her skirt, and grabbed her hand. When we initially walked in, he had a smile on his face, then he sat down, looked at mom and dad and clapped.

However, at other times, he did not seem to be initiating interactions with his eye contact. He did not initiate play with either the examiner or with his parents. He also did not seem to be able to play back and forth with either his parents or the examiner. He did not bring toys to show.

Impression: Lively is a 19-month-old boy with a complicated past medical history including right-sided stroke thought to be perinatal in origin, history of infantile spasms, and seizure disorder, who presented with concerns of autism. Though it is difficult to fully determine whether or not he has autism due to his complex past medical history, and atypical behaviors that may be partially resultant from his previous neurological insults. He does manifest developmental delay, and he has some social interactions which are atypical including lack of initiating and offering of toys. Additionally, he also has some repetitive movement including hand flicking, rocking back and forth, and some hand flapping. Further workup is indicated.

Lively has been given the diagnosis "global developmental delay with concern for PDD-NOS." Pervasive Developmental Disorder - Not Otherwise Specified. This is one of the autism spectrum disorders. Although the name sounds quite vague, it actually means something very specific.

We have more developmental testing scheduled next week, and we are already scheduled for a 3 day, 9 hour intake with the University of Michigan Autism and Communication Disorders Center. If Lively keeps the PDD-NOS diagnosis, we may be eligible for an 18 month research/ intensive intervention project through UMACC. The specialist feels that Lively probably will keep the diagnosis.

That's all I have in me for now. More later.