So Harlie met her new pediatrician today. That went well, I think. They seem nice there. It is REALLY close, so that is a huge plus for me. It was tiring, though. Going over all her stuff and introducing new people to her can be a bit exhausting. Luckily he knows her cardiologists well, and they gave him a heads up.
I started working on getting all of her other appointments rescheduled. She has to see her general surgeon to talk about and schedule her next surgery (anoperineal fistula). He is in DC. She also needs to see an orthopedic doctor for her spine issues. They wanted us to follow up in April and obviously we couldn’t do that. They are also in DC. So, of course, I try to get them scheduled for the same day. I start by calling the surgeon and getting some dates. Then I tell the scheduler that I need to call ortho and will call him back. He says he can do that for me. Great, I say. I’m in luck and that doesn’t happen often! At some point, he says, “What’s wrong with her?” Nice. I answer, “a lot”. Then he tells me that coordinating these two appointments will never happen. The surgeon only has clinic on Tuesdays and ortho doesn’t have clinic on Tuesdays. Then his computer stops cooperating and he couldn’t get the ortho appointment scheduled. So, I’ll have to call back. So much for my luck.
I really thought that we would be able to take a break from doctor’s appointments for a while. I thought wrong. She has a cardiology appointment on Thursday, pulmonology appointment next Tuesday, pediatrician appointment next Thursday (and probably bi-weekly after that), she will meet a brand new doc (GI) in June, feeding clinic in June, general surgeon, orthopedics and ENT in July, and I still have to reschedule her appointments with her eye doc and surgeon.
That is 10 docs before July 5th. Oh, and we need to get her a new helmet – so that’s another bunch of appointments. Not to mention weekly physical and bi-weekly occupational therapy appointments. Sometimes I really don’t know how I’m going to do it. Just typing it is exhausting!
I changed her feeds to a higher volume per hour for 22 hours instead of 24 hours. That gave us 2 hours away from the pump. One less thing to have to carry to the doc today. And during bath time, I took her upstairs and gave her a bath at the sinks while Murphy played in the tub. It was nice to do that. I’m sure Harlie liked the change of scenery. We used her changing table for the first time since December. I think she liked her room. Hopefully she’ll be able to sleep there by the fall. She was sound asleep by 9pm, which was great.
Well, that’s it for tonight. Talk to you later.
Take care,
Christy
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