I’m sure your curiosity is slightly aroused by the unusual name of the brace Lucy has to wear. Sadly the explanation is a rather boring one: they are made by a company called Rhino!
Lucy has to wear the brace 23 hours a day. We’ve had three weeks now to get used to it and it’s changed how we do things in a number of ways:
Clothing: Her once extensive wardrobe (thanks to very generous friends and family) has now been trimmed down to a few key items. To prevent chafe, she needs to have clothing underneath all parts of the brace. I put her in a sleeveless babygrow and a pair of leggings, day and night. This is the only way I can make sure all the affected areas are protected. Unfortunately for her, it is summer here in Perth and our temperatures have been hovering around the mid-thirties plus. Having to wear leggings means that she is usually wet with sweat, particularly at night when the temperature in her nursery averages 28 degrees celsius. I’ve bought a stack of the sleeveless babygrows from Kmart for $3 each. The selection is minimal so her wardrobe really has become more of a uniform.
Feeding: I am still breastfeeding Lucy and, while awkward, continue to use the cradle hold with a cushion underneath her for support. It looks pretty funny with her leg hovering in the air but it works and she seems comfortable! The bigger challenge comes with feeding her solids. Our wonderfully convenient bumbo and highchair are now redundant as she doesn’t fit into them. I think I’ve come up with a winning solution though: we have an old couch in the shade outside which is covered with a sheet. I prop her into the corner, sit next to her and do my best to get as much into her mouth and as little everywhere else as possible – no small feat! If things get a little messy, I just pop the sheet into the wash and I always have a carton of wet wipes on hand to keep things tidy. It’s actually really pleasant feeding her outside, looking at the garden, and super comfy too.
Nappy changes: No problems here other than it taking a bit longer as I have to take the brace off and put it back on again. Strangely enough it’s actually become one of my favourite activities during the day. No really! Every time I change her nappy, Lucy gets a short time out of the brace and is able to kick her legs freely and roll around a bit on the change table. It also allows me to monitor her left leg in case the nerve gets affected like it did in the Pavlik harness. So far so good on that front.
Sleep: I knew it would take a while for Lucy to adjust to sleeping with the brace on. Prior to the brace, she had become so mobile and loved to roll around in her cot, often getting stuck then crying for me to roll her back over again, only to flip over immediately after I’d rescued her. Sound familiar?! She had also taken to sleeping on her side, with one hand holding onto the side of the cot. She traveled extensively during the course of a night, and I would never find her in the same location that I’d left her in! Needless to say, she found the brace incredibly frustrating for the first week and a half. She slept fitfully and I was in and out of her room throughout the night for ten nights running, at times really struggling to console my very miserable baby. It was EXHAUSTING! Fortunately her sleep has since started to come right and she’s only waking up about twice a night at the moment.
Playtime: This is another major area of frustration for Lucy, again because she had become so mobile before she was put back in a brace. Where I used to be able to leave her playing happily on the mat for a few minutes, now she cries as soon as I leave her. I spend most of her waking hours sitting behind her so that she can sit propped up and play and know that I am with her. I get very little else done in a day! I can’t put her in the bumbo or highchair and make supper or unpack the dishwasher or strap her into a carrier and hang up the washing. All chores now get done when she is napping or at night when she’s in bed.
Milestones: The doctor assured us that being in a harness won’t restrict Lucy from meeting all her important developmental milestones. I suspect, though, that it is probably going to delay them a bit. She was never keen on tummy time (an important precursor to crawling) but now it’s extra-challenging. I make sure she does a bit of time on her tummy each day, even though it’s not very comfortable. Some babies apparently learn to crawl and roll over while wearing the brace so we’ll see if Lucy will beat the odds. Sitting isn’t a problem and I think the brace actually provides a bit of extra support. She wasn’t quite sitting on her own before she went into the brace and I’m still right behind her for the time being. I hope it won’t be long before she can do it on her own.
Travel: The lovely new car seat we’d bought for when she was ready to transition out of her capsule is unfortunately not wide enough for her now. I had it checked out by an occupational therapist at the hospital and she tried to modify it with some foam padding but it still didn’t work. She then took me across to the wonderful not-for-profit organisation called Kidsafe and they offer seats for hire at a cost of $70 for three months plus $40 for the extra long strap that I needed to accommodate Lucy’s brace. A technician from the hospital then fitted it for me. I feel much better knowing that Lucy is in the right car seat with proper support. Fortunately she is still able to fit into her pram and I’ve just had to put a cushion behind her back to ensure her feet can straddle the edge and not get pushed inwards.
When she first had to go into the brace, I felt completely overwhelmed by the challenge of it but it hasn’t taken long to adapt and find solutions to make things work smoothly. Thank you to everyone who has sent messages of encouragement. I need and welcome them!