Friday, September 18, 2009

Back to KKI

Well, after a sleepless week, Simon and I got into the car this morning and drove up to Baltimore for our next visit to Kennedy Krieger Institute. This time, the visit was an occupational therapy (OT) evaluation. Rachel's visit is scheduled for early October. Kevin stayed home from work today so that Daniel and Rachel could each have their "school" and not have to make the trip with us so that everyone was able to be where they needed (except for Kevin, who probably should've gone with us, but I insisted otherwise). In other words, I became a bit of a dictator.

Let me start by saying that sleeplessness really interferes with everything in life. For a few weeks now, we've been dealing with sleeping issues in the middle of the night -- usually by Simon, but Rachel has her nights too -- and I'm getting pretty close to the breaking point. They are both suffering from colds or allergies or something. Now, before falling asleep last night, I heard that horrible cough that every parent who has experienced this DREADS -- the seal-like bark of croupe. Well, not quite, but definitely something that sounded like we were going to have an incident during the night. When she woke up coughing at 2:45am, I was ready -- planned a steam bath and a visit to the freezer (a combination that worked for Daniel in the past). Fortunately, she fell back to sleep (on her own) at about 3:15 and her cough never developed into that "croupe-like" nightmarish quality. But I stayed awake until at least 4:20, when I looked at the clock and I remember thinking "Oh, great -- another sleepless night -- Simon will be up in about 10 minutes and we need to drive up to Baltimore". The next thing I know, I am hearing Simon, groan and then look at the clock expecting to see it read 4:35 or something similar -- it said 6:38!!!!!!!!! We needed to be on the road at 7:30 so it sent us into a bit of panic mode, but we got out....

The visit really didn't tell us much we didn't already know. We already knew that Simon has significant gross and fine motor issues, poor motor planning, etc. It is their recommendation that he receive additional OT in addition to what he is currently receiving in the classroom (1.5 hrs/wk) and that it continue beyond his 3rd birthday. That last thing is important and will be mentioned in her report -- with the IEP meeting coming up in a couple of months, any services that are ongoing will need to be justified if it's going to continue.

So, that's the week, in a nutshell.......

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