Day Three

Sorry for the delay in updating but by the end of Day Three, I was spent and in bed (and asleep) by 9:30pm.

The night of the sleep study, I probably dozed off around 2am. Promptly at 6am, they woke me and Jack up and practically kicked us out of the sleep lab. We had to go back to the floor to get discharged, which didn't happen until 10am. The hold-up was getting blood from Jack for a few tests Jack's neurologist had ordered. Since Jack is an impossible stick, we had to wait for the IV team to show up. We went directly to the eye clinic, where Peggy, Eric and Mary were waiting for us. They were running an hour behind, so all the stress of demanding immediate discharge from the floor wasn't even necessary. Both Eric and Jack's eyes look good with no changes to their prescriptions. I was able to get two prescriptions for Jack -one for distance (when watching his TV) and one for when using his eye gaze system.

With the eye clinic running behind, we then cut it close to make Jack's afternoon appointment with his neurologist. I hope we were Jack's neurologist's last appointment of the day because she spent an hour with us. A few things I learned from the appointment: (1) I don't need to worry so much about Jack's contractures because they aren't necessarily going to continue to get worse; (2) we need to increase Jack's food intake because he has lost weight. When we were in St. Louis two years ago, they weighed him on a bed scale and said he weighed 70+ pounds. He now weighs 52 pounds. But, Jack's neurologist said that bed scales aren't accurate and he probably did not weigh 70 pounds, but that she does think he looks thinner than he looked two years ago; (3) Jack's tongue has gotten bigger (which is why it's always out of his mouth) and this is related to his muscular dystrophy. I was worried it was a neurological thing, but it's a muscle thing (called hypertrophy). The tongue out of the mouth really bugs me - but, it is what it is, so I just have to accept that; (4) one of the blood test ordered is to send to a lab in Iowa that can look at Jack's DNA and possibly figure out the exact glitch in Jack that causes his form of muscular dystrophy. They are also going to bank Jack's blood here at the Neuromuscular Center at Washington University. In the event that they can't identify what Jack has at the Iowa lab, they will have Jack's blood on hand should other tests become available in the future; and (5) finally, I got a lecture about lifting Jack. I was told that I need to use the lift when I'm at home (which I don't do) and I need to lift with my legs, not my back. I suppose it's a good thing that they are concerned about the well being of their parents too.

All in all, this was our best round of doctor visits in years. No surprises and everything looks good on all fronts. Orders are to return in two years.

Pictures from Day Three:

Peggy reading a book to Jack and Eric while waiting in the eye clinic (I'm taking the picture from outside in the hall looking through the window - which is why it looks foggy)

Eric requested this picture by the giraffe

Outside the Center for Advanced Medicine
(where we had Jack's appointment with his neurologist)

The boys and Dr Anne Connolly (Jack's neurologist)

Today is a day of visiting with friends. I had lunch with a few of my trach board friends and I'm meeting another friend for drinks this evening. Mark, Hilary and Eric went to the zoo today and Mary is spending a few days at her best friend's house (in our old neighborhood). The girls fly home tomorrow and we head out Sunday.

I'll share pictures from today a little later. Thanks for checking in.