Tests and More Tests – 3

Our next meeting happened in late 1990 with one of MCV’s leading pediatric neurologists. We were feeling better about things at this point, given the results of the previous two tests

. I guess you could say we were “on a roll”. This visit gave us less to be happy about. The doctor spent a great deal of time working with Ben. When Ben quickly tired we scheduled an extra appointment so he could do a thorough analysis. I appreciated that he was very forthcoming in his findings as well as his impressions about Ben’s future potential; even though it wasn’t exactly what we wanted to hear. He first gave us a baseline to help explain the trajectory that Ben was now on in terms of his development. Here is what we were given (Ben was 14 months old at this time):

Milestone                      Age Expected      Age Attained

Gross Motor:

Prone: Head up prone      1 month            7 months

Prone: Chest up Prone     2 months         11 months

Prone: Rests on Forearms  3 months      14 months

Prone: Up on Wrists          4 months          not yet

Prone: Rolls to Supine       4 months        11 months

Supine: Rolls to Prone       5 months        12 months

Sits with Arms in Front     5 months          not yet

Sits Steady, No Props         6 months         not yet

Crawls Quadriped               7 months          not yet

Prone: Comes to Sit            8 months          not yet

Motor Adaptive:

Unfisted                                3 months        5 months

Bats at Objects                     3 months       8 months

Midline Handplay               3 months       6 months

Hands Grasp in Midline    4 months       6 months

Active Reach and Grasp     4 months      10 months

Brings Objects to Mouth    5 months      10 months

Transfers                               6 months      13 months

Finger Feeds                         8 months     13 months

Cooperates with Dressing  12 months   13 months

Receptive – Social Smile      5 weeks       4 months

Coos                                          8 weeks       5 months

Receptive –Orients to Voice   3 months  8 months

Razz                                          4 months    10 months

Ah-goo                                     5 months       not yet

MMM sound                          5 months     13 months

Babbles                                   6 months        not yet

Receptive – Gesture Games  9 months     not yet

Receptive – Understands “no”  9 months  14 months

The doctor’s findings were that Ben’s strongest area of development was his receptive skills, where he was performing sometimes at a 9 month level. However gross motor upper body and expressive abilities were running more in the 5 month range. Gross motor lower body ability as at 3 month level and fine motor skills were at an 8 month level. Because of the variance he said he couldn’t tell how much his expressive skills could be being hindered by the Cerebral Palsy. He also gave us an assumption about Ben’s habit of throwing his head back. As I said, the conclusion had been that this was a kind of stimulation due to lack of neural control. However, the doctor wanted us to check to see if it wasn’t at least partly due to pain in the esophagus (Sandifers Syndrome) as a result of reflux. So off we would go for yet another test. This time it would be a barium swallow. The doctor’s conclusions were all very open-ended. He was very clear that Ben was not stuck in his current level of ability and that we should do everything possible to help him reach his full potential. However, he tempered this with a list of possibilities that we needed to prepare ourselves for; some of those being scoliosis, hip dislocations and seizures. This meeting certainly was not as uplifting as the meetings with the urologist and heart specialist, but all we could do was forge on.