My Cup Runneth Over....

So two weeks ago, Jackson had a checkup with his Pediatrician. Usually when we see her, it is a warm and fuzzy experience during which she oos and ahhs and checks him out in between his infectious belly laughs.

This visit was a little different. Jackson was of course his normal social and pleasant self. But during the examination, Dr. M (as we'll call her here - and not to be confused with Auntie M) noted that she's got some real concerns. Jack isn't really communicating - and we've been trying and trying (for over six months now) to get him to pick up some simple signs - Mommy, Daddy, eat, more.....but he hasn't caught on. He doesn't respond to "where's mommy?" He can't point out objects or people. His movements are very stiff - and while he's starting to walk - it is very stiff and from the hip. So we left the office feeling less than excited about what little progress we've made.

glug glug - 1/4 of the cup is filled

On Valentine's Day there was snow, ice and no school. So I stayed home with the kids. Jack woke up at 7:30 cranky because his tube had disconnected so his crib and pjs were a bit wet with formula. I changed the bed, gave him a bath and dressed him. Still cranky. So I thought maybe he was still tired and put him back to bed. He slept until 10:00am - at which point I peeked in to check on him and his eyes were open. So I picked him up and carried him to the family room. By the time I sat down on the couch, he was asleep again. So I carried him back up to his room and laid him in his crib. At 11:30 he finally woke up. He was still a bit fussy but managed to play a little. By 1:00 he was out again and slept until 3:30. I was pretty concerned about this and called the Dr. M to discuss. She said as long as he was alert and I was able to wake him at some point not to worry. Right, because its just that easy to write off odd behavior in a kid that already has symptoms of neurological issues....

glug glug glug....3/4 of the cup is now full

So that brings us to yesterday. Jackson had cognitive and occupational therapy scheduled. The therapists come to the house which is great, and by now we've come to know them (and they us) pretty well. Both therapist noted that his responses are significantly more delayed than previously. He seems to have a slight shake to his movement and is really wobbly. And his eye movements are markedly worse. I relayed to them the excessive sleepiness episode from last week and they were both concerned for neurological reasons. Seizures? Stroke? Or what?

glug glug glug glug...add some more to the cup

So today we are all playing phone tag. The therapist calling Dr. M to discuss their observations, Dr. M calling the genetic neurologist, and the genetic neurologist calling the pediatric neurologist and all of them calling me on my cell phone (there go my minutes!). The result of all these calls will likely be another round of let's just wait and see. It is the favorite past time of Doctors and insurance companies and my biggest pet peeve.


glug glug glug glug ....Okay. Enough already. It reminds me of having to drink that miserable 4 liters of emulsified polyethylene glycol a day before your colonoscopy..... and leaves me with about the same disgusted feeling. ughhh.