John & I are becoming old pros at navigating the chaotic day we call Spina Bifida Clinic. For the last little bit, Zoe has been cleared for six month visits instead of every three. As all my spina bifida families well know, a lot can change in six months. John & I have picked up a few tricks along the way to help make that day easier.
1) Arrive early. And by early, I mean, WAY early. This Monday, clinic began at 1 pm. We were there at 10 am. Yep–three hours early. You have to though, in order to get your renal ultrasounds done, speak w/ urology & get the verdict on how the cathing & kidneys are doing, grab lunch, etc.
2) Divide & conquer. John goes to grab lunch, I take Zoe & go sign in. That way, we can hopefully minimize our wait time in the lobby (a lesson I learned the hard way after being in the second round of patients to get called back meaning we had about a 2 hr wait in the lobby with a fussy, overtired infant).
3) Stand in front of the exam room door so that the docs & therapists can’t get out till all your questions are answered. Ok, so I am halfway joking on this one. But seriously–that’s what it feels like you have to do sometimes. Especially with some of the docs–they are in and out so fast. I hate leaving appointments feeling as if I have unanswered questions, so now, I write them down, take notes, whatever I need to do to make sure I don’t forget anything).
4) Bring copies of reports from our regular therapists. It gets confusing sometimes trying to remember what goals we are working on in each specific therapy, where we need more work, what troubles we’re having, etc., at the very moment that the Spina Bifida Clinic therapists want to know. Now, I just bring copies of our most recent progress reports. MUCH easier!
5) Breathe. When Zoe was a baby, I used to get SO nervous about these visits. It felt as if everything were hanging in the balance and I hinged on every word the docs would say. NOW, I feel much more empowered as her parent–after all, John & I know her best, better than anyone, and we get the final say so. I have learned that not everything is cut & dry, and just because one doc says something does not mean it’s the right decision for us.
This clinic visit was our BEST YET. Seriously, I wish I had a video camera to record the PT’s reaction when she saw Zoe standing at the chair, or getting up on all fours. We got all good reports, no surprises (except the therapists–they couldn’t believe all Zoe was doing!) and got a few suggestions for things to focus in on. We were cleared for 6 mos, except neuro who cleared her for another year!
Now that that’s out of the way, bring on the Christmas festivities!!