Tri-9 Mom

The last of the many tests this year was the auditory brainstem response (ABR). As noted earlier, this test was supposed to accurately read the threshold of hearing for each ear. I was concerned about this test because they had to sedate Ben heavily to record their results. Given his many challenges we could not be sure how he would react to the sedative. I remember sitting on the hospital bed reciting to Ben his favorite story, Officer Pat, while he slowly fell asleep in my arms. I don’t know why it scared me, but it did. We watched all the computers hooked up to Ben as they delivered sounds to each of his ears and the sound waves registered on the screen.  Neither Dennis or I had any idea how to read it, but each time we saw the wave blip across the screen it caused a kind of excitement; almost as if our kid was participating in some kind of competition

. At the end of the test as we waited for Ben to wake up from the sedative (which, to me, seemed like an eternity) the doctor went over the results with us.  The testing showed significant hearing loss in both ears.  What???…I honestly thought my jaw would hit the floor.  This bit of news came out of left field.  Nothing we had read prepared us for  hearing loss.  How do you communicate with a child who already has multiple challenges, when he can’t even hear you?  After dropping this news on us came the BUT…. But what?  Apparently they weren’t entirely sure that fluid was cleared out of Ben’s ears and that the results could be slightly skewed.  So, why did we do the test???  It’s been a long time, but I honestly can’t remember if we actually got an answer to that question.  His conclusions were that he wanted to repeat the ABR, he wanted us to strongly consider tubes, and he wanted us to consider an evaluation for hearing aids.  All this was based upon a test we were just told might have bad results because there may or may not be fluid in Ben’s ears.  I’ll be honest, my initial response was that I wanted to take my son home and just wait a while before we put him through more tests.  It was time to go bury my head in the sand!  Fortunately, my level headed husband was there and was willing to discuss options with the doctor.  We had been considering for a few months when to have eye surgery to correct Ben’s strabismus, and had decided to do it during the summer which was about four months away.  Dennis suggested that we arrange to have the second ABR done while he was under the general anesthesia during that procedure…great idea.  If Ben was still having the chronic ear infections we would then consider having the tubes placed in his ears.

My feelings at this point:  Tired and confused.  We had some good news to rejoice about and some not-so-good news to worry about.  It seemed like every day something new was coming at us, and it was hard at times to keep a positive outlook.  I remember at this point wondering a lot about what life would be like in the future when Ben was older and his disabilities would be more noticeable.  What a useless exercise that was.  Nowhere in those future predictions did I imagine the utter joy that this young man would bring to me.  My perception would certainly not become my reality.

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.