It's Soccer Time

Soccer season has started ~





Yes, while watching Eric run around the soccer field, I suffered a brief wave of sadness (and teary eyes) thinking of what could be ... what should be for Jack. Jack is almost 10 years old. What do 10 year old boys do? What would Jack be doing if he could?

When I got home from work and went to see Jack before heading out the door for soccer, Jack looked pretty wiped out laying in bed. Kristi told me he is tired because he spent three hours in his wheelchair working with his eye-gaze system. Simply sitting in his chair tires Jack out, that's just not fair.

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Eric quote of the day (and I swear he actually said this to me when we were discussing his behavior at school):

"Mom, you've annoyed me since the day I met you."

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Answering Rachel's question ~

I scheduled all of Jack's appointments - most were scheduled back in February. The appointment with the cardiologist was a last minute decision and I just scheduled it last week (and was quite surprised they could get us in). Jack's neurologist was actually already booked through November when I called in February, but thankfully all it took was an email to her and we were scheduled in the week we wanted. We don't have a pulmonologist in St. Louis anymore so I asked Jack's neurologist if she would schedule the sleep study for me, and she graciously did.

As far as getting the ENT and the Ophthalmologist to perform their respective procedures at the same time - since I know they share the same OR day, it only took an email to both of them and they saw to it that Jack was put on each of their OR schedules. I did follow-up to make sure everything is set - which it is. It really is a coordinated effort of me making the appointments early in the year along with having physicians who will make the effort to schedule things they don't usually schedule (ie: sleep studies) and who will take the time to coordinate schedules. Having physicians who not only give out their email addresses, but who also actually answer their email is helpful too!

The last sleep study Jack had was in 2004. The purpose of the sleep study is to measure/check all of Jack's numbers (O2, Co2, tidal volumes, etc) to make sure he is being properly ventilated ie: not being over-ventilated or under-ventilated. I suspect he may be over-ventilated because his spinal fusion surgery really opened up his chest area and gave him more room to expand his lungs.

and now .................. it's time for bed