Today was Juno's follow up ultrasound and exam at the ortho. I was hoping that there would be enough improvement that we could start weaning her off the Pavlik harness--or at least give us some encouragement.
Unfortunately, there was no improvement. The ortho didn't think another 2-4 weeks in the Pavlik harness would make a difference, so he put her in a hip abduction brace. Unlike the Pavlik harness which is all velcro and canvas, the abduction brace has a hard plastic back. It does the same thing--keeps the legs flexed and spread apart--but it's more rigid so (hopefully) more effective. The ortho said the reason the Pavlik didn't work was probably that Juno was too strong for it and stretched the straps with all her kicking and straining against it!
Our first afternoon in the abduction brace has been ok. With a different brace, we now have to figure out nursing, swaddling, and sleeping all over again. She napped ok and was even happy for quite a while laying on the floor, but she did cry for about 30 minutes and I think she was just uncomfortable.
(Of course, it's always hard to tell if she's uncomfortable because of her reflux, the brace, or a combination of the two--or maybe she's just a fussy girl)
Here's a front view of the new brace. At least she can wear normal clothes again!
And here it is from the back. You can see in this picture how big it is on her. She's between sizes which makes it even more uncomfortable but hopefully won't make it less effective. As for me... I'm doing ok, although I'm sure there will be some tears later on. I'm disappointed and discouraged and scared. If there is no significant improvement between now and Valentine's Day (our next follow-up), then we'll have to consider a reduction and a Spica cast (surgery and body cast). I don't think I have to say that I want to avoid that. Then again, if this isn't going to work either, I'd rather just cast her and get it over with, instead of wasting time and torturing her with things that don't work.
Juno and I (and the rest of the family, who do still live here even though I haven't blogged about them in weeks) would really appreciate your thoughts and prayers.
what a hard thing to deal with. i couldn't imagine watching my little one be so uncomfortable and not being able to do anything about it. I've been praying for you though, i'll add your family in there too :). Love ya.
ReplyDeleteOh no no no!! I'm sorry! I will keep her in my prayers! I hope this works out!!!
ReplyDeletePoor Juno! We're praying for you.
ReplyDeleteThat must be so hard on everyone. As a mother, I can only imagine how hard it is to handle. You are in my thoughts! And I'm hoping for a good report in February!
ReplyDeleteYou got it -- we'll add you to our prayer list. Don't hesitate to call me again if we can ever help. Even if you just need a break!
ReplyDeleteHi, my son just got this brace yesterday. He has to wear it for 3 months and we are just trying to figure out how to "re-think" the normal things while he is in this. How did you do solids while she was in the cast since she wouldn't fit into a high chair? Stroller? Car seat? Any assistance you could provide would be very very very helpful! Thank you so much.
ReplyDeleteBen and Abby--glad you found me! It can be super overwhelming but don't worry, things have a way of working out. I didn't feed Juno solids until she was halfway through her second cast, but when I finally did start, she sat in a bouncy seat and I knelt on the floor. She fit ok in our twin umbrella stroller (Jeep) with her braces and I had a bike trailer with an infant sling for when she was in her cast. Juno fit in her normal infant carrier just fine with both braces and when she went into a spica cast, the hospital had a medical carseat they loaned us. If you click on the "hipster kids" link at the top of my blog, it will take you to all my posts about HD and you can find even more info about the things we used and what worked best for us. Good luck and don't hesitate to ask if you have more questions!!
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