For 1 month we have 2 SB clinic days, MRI, pediatrician check-up, 2 dentist appointments, neurosurgeon follow-up (which I had to move to June), 1 resources for exception children visit and 1 camp consultation.
First was SB clinic day.
It went well after a bit of a schedule-confusion.
My appointment letter said 0830, but the confirmation phone call said 1030, so we aimed in the middle for 930. We went straight into a room, and stayed there for 6 hours!
My father came with me, which was good because we didn't actually have time for lunch. We were told, 'just one more person' or 'I can come back' but from experience... you grab them while you can.
So my dad went and brought food back to us.
I had one focus. Get the MACE scheduled. But also see and talk to everyone else.
But we also followed up with everyone. Social work to see if there is anything to help us (and introduce herself as our original social worker has left). Psychologist to follow up with our plans from last year and my concerns about Nick's learning. Occupational Therapist to discuss how Nick is doing with school and his wheelchair. Physiotherapy to talk about his walking and mobility.
Nick showed off by letting go of the table and standing there for about 10 seconds... over and over again. The label L3 came out again with discussion about functional muscles. Which I listened to and put aside until I can think more about it.
Dr Church came in and we discussed how everything is. As Nick's developmental pediatrician she is part of everything. I really like and respect her, and the feeling is mutual, she respects my decisions and observations. Nick loves her too. We talked about bowels and bladder and the upcoming MRI to look at tethered cord (which I have successfully pushed to the back of the my mind for the last couple of months).
At the end of the day we saw urology. Discussed the MACE, I already had read or learned what he explained, all of the information was consistent with what I knew. I signed all of the papers and we had a plan (MACE operatively, but if for some reason it was not possible then the c-tube as a back-up). Now it is just waiting for the date.
Nick was actually very interested in what was being said and when we got home that night asked when the catheter was going to go into his belly button.
We also got a prescription for a new type of oxybutynin. A gel instead of the patch. We've had issues with the patch coming off early, and he had a new red and irritated mark from his last patch (that just got worse through the day). So we'll try this new gel.
We left clinic with a ton of information, a plan for surgery, and a car full of tired people, with a drive through rush hour traffic. No clinic again for 1 year, but as usual Dr Church can be contacted earlier with any questions or concerns.
2 days later we were at Sick Kids for Nick's MRI. Sunday morning at 8am. Yuck!
8am meant a very early start.... but no line up or bumping.
Katheryn liked Nick's ninja look.
It worked out really well. I knew the nurse he had, he went to sleep really well and wasn't scared. He woke up drunk and not unhappy. He was fine for the drive home (except for us getting a bit lost - not my fault), and tired for the day.
Now that that is out of the way we have lots of other appointments through the month, and follow up with Dr Rutka in June to see what the MRI says.
One thing I have noticed over the years with Nick's appointments, we seem to have months and months with no appointments and then they all bunch up like this for a month. It makes for a really busy month, but then you know you'll get a break soon.
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