Lyra is almost 6 months old!!!!!! While I am super excited about this, I am also dreading the next 3 weeks. 6 months is a major milestone, especially for doctors. This means that EVERYONE (except Genetics) wants to see her and run additional tests. For most kids, 6 months means a check in with the pediatrician and some shots. For Lyra is means visits with:
- Surgery Clinic (with an ultrasound)
- Cardiology (with an EKG and an Echocardiogram)
- Pediatrician (with shots)
- Ophthalmology (no idea what tests they will want to do)
- Urology (with an ultrasound)
Oh, and she has OT and PT appointments every week (at least these ones are at home).
Instead of having so many appointments spread over three weeks, there has to be a better way of doing this. At least they could maybe coordinate their requests for tests (I have ultrasounds on two different days). The worst part is, while I find this overwhelming, when she hits 1 year it is only going to be worse. At one year she will have all of these again plus a few more. It’s not that she necessarily has a major issue with all of these systems, but because of her genetic diagnosis she has to monitored by a few people.
There has to be a better way.
At moments like this I wish that they could just check us into the hospital for 24-48 hours and let everyone come to her. We can run all of her tests back to back and then doctors can come to her bedside for examinations and to talk to Mark and I. She would only have to do vitals once (something she hates), we would be able to stick more closely to her feeding schedule, and we would all be able to get more sleep (messing with the nap schedule is always a BAD idea). Also, if we need to add another specialist (as often happens), she is right there! It’s not hard to get another consult when you are already in the hospital. I know that it may not be realistic, but there has to be another way to do this.
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