I can’t believe I’m typing this. A fortnight ago we were awaiting a meeting with Aces consultant, fearing the worst and praying for progress.
His feared appointment on Monday afternoon couldn’t of been more different that what I’d envisioned. In the best possible way- at least I think.
Scanning for gold
Like every appointment before us, it began with the routine ultrasound. Amazingly our sonographer also did most of my many pregnancy scans, and as it’s nearly a year since my private early detection scan, it feels like she knows us pretty well.
Anyway, I digress, the scan showed a HUGE improvement in Aces angles. More growth than we’d ever seen. More improvement in 2 weeks than we’d had in the past 8 weeks all together. We were excitedly flabbergasted. His hip was finally looking near ‘normal’.
The news continues
After the scan it’s onto the consultant who we wait for in a small cubicle as he goes from patient to patient. He arrives, Aces scans flash up on the screen and we discuss how they are looking better than ever.
He asks us to remove his harness- we presume he’s in need of a new one, mainly because it’s a bit on the smelly side, it’s extremely rubbed and looking very tired in areas.
But no. The harness is apparently to stay off. And stay off for 4 whole weeks.
From excitement to confusion
I should mention that at times our appointments have felt a little rushed and that questions I have don’t often have a valid answer (being told to visit a website instead kind of says it all…..) so it’s no surprise I left feeling really confused.
Why would we be removing the harness before his angles have hit the ‘normal’ threshold? If it’s working, why stop?
To give Ace the ‘benefit of the doubt’ apparently. To see if his hips can get there on their own. How? I don’t know, but apparently it CAN SOMETIMES happen 🤷🏼♀️ worked well last time we tried that approach… NOT.
No weaning, no double nappies, just waiting to see. And hoping that he shows no regression which could lead us back to square one (or hopefully two or three)
Something I seriously didn’t understand until Ace came along. And that gut feeling led to an evening of joyful tears mixed with fear. Fear of the worst possible outcome in 4 weeks time.
So like most Monday afternoons before it, I sought out reassurance from other mums in the same situation. I know I’ve said it before, but I honestly don’t know where I would of been without these Facebook groups and mums on Instagram messaging me. And thankfully they understood my concern.
No set guidelines
It’s nothing new, but the lack of consistency across consultants course of treatment baffles me. We were in the small few who would remove a harness so quickly, especially without reaching the all important ‘normal’ levels. Instead, most like to see consistency for 3-6 weeks before removing the harness, only doing so in reduced hours of wear first.
Another reason to fear regression in 4 weeks time.
Taking things into our own hands
Which leads us to where we are today. Taking the lead and deciding to wean Ace out of the harness for the next week before giving him 3 weeks harness free. This, we hope, will enable his angles to reach normal or stop regression reaching disastrous levels.
But to give him the best possible chance, we’ll continue using his open car seat, ‘wear’ him in the ergonomic Ergo Baby Carrier and keep clothing soft and loose around the legs. The worst thing to do would be to force his legs back into a straight position and restrict his movement.
So we’ve got four weeks of snuggles, swimming and lovely dressing ahead of us, tinged a little with downright fear. I’ve still got so much to share with, what I hope, will be helpful advice to those starting on their DDH journey. So these type of posts will continue whilst we await our next set of results.
But again, thank you so much to everyone for reading these posts. It’s heartwarming to see how many people have landed here and your direct messages have seriously kept me sane throughout all this.