Getting back into Little Red’s medical stuff was a bit of a shock to the system. After a few years of dealing with it, we’ve cottoned on to the fact that doctors tend to take long annual leave over Christmas, New Year and January. Probably to do with the school holidays which totally makes sense.
Our last appointment was with our pediatrician in early December. We were supposed to have a session with the NICU Clinic in mid-January but it was rescheduled for the day after Michael got back from his USA trip last week.
Anywho, the session really takes it out of us so we’re not upset it was our last. That afternoon we both confessed to feeling quite deflated. I won’t say I spiralled but the following day was certainly a bad one.
TOO RELAXED OR JUST A HOLIDAY?
It makes sense that we, unconsciously or not, had a holiday from it all too. I wonder if maybe I got a bit too relaxed though, too casual about the whole thing. Discussing all of Baby Bear’s ailments and what we had coming up at the NICU Clinic was like a slap in the face. I knew what to expect this year, obviously. I mean, we’ve had things booked in for months now. We’re genuinely okay with living our lives from one spinal specialist appointment to the next. But as fear of the unknown arose so did the feelings of being helplessly overwhelmed.
It’s not like anything was said that we didn’t know already. I guess it was just that we were there and that this is our life. Albeit it’s not as bad as what some others deal with, in fact I’d argue that we have it fairly easy, but it’s our life and I’m not going to compare or feel like I can’t have negative feelings about it.
Hubby and I have decided that we’ll holiday when the doctors holiday. You know, at least we have that option. Even if it’s just in the mental sense. Ideally we’d love to do a trip and start making a tradition out of when we go away. It’ll obviously work with schooling in the future and it means we can all completely unwind.
We’re not blind to the fact that Little Man and Copperhead will be affected by their sisters ongoing treatment, especially when it does come to any spinal surgeries that may happen. We’ll ALL need a break and, some years, maybe even time to reconnect.
SO, WHAT NOW?
Well, as I mentioned in my last post, Little Red will probably need grommets. She has significant fluid in her ears and has done every time a doctor has had a look. Her ENT said she had around 40% hearing loss back in November. This could explain why she doesn’t talk as much as Copperhead, whispers and sometimes just seems to mouth words at us. Of course speech pathology has not been ruled out either yet but we’ll see how we go.
As well as grommets, while she is under general anesthetic, an endoscopy of her throat can be completed. LR has always had a hoarse sounding voice so it could be she has a small web or fistula. The reason this could be important is because she could then potentially fit into the VACTERL Syndrome I mentioned AGES ago.
We should also have a meeting with a geneticist soon as well as another trip to Sydney for her spinal specialist appointment. This is then followed by visiting her pediatrician. I’m not even thinking about the NDIS stuff for now. A Bayley’s Test will be repeated later this year due to the monumental stuff up that occurred when trying to get her her first one.
So yeah. I’m trying to just take each day as it comes. I know I have to sort out new orthotics for her soon – this time larger ones that will be around her ankles. And then there is repeated physiotherapy. But for now, we’re all just doing what we do best. Being there for each other and trying to turn any frowns upside down.