I'll try to keep this short. As many know, E was born with a left clubfoot and has been undergoing weekly serial casting since he was one week old. His fourth cast was put on last week, and his foot is so flexible and has made such good progress that the doctor is pretty certain this will be his last cast (yay, as four is the minimum done in treatment), and that he will not need the Achilles tenotomy because his tendon is stretching so well.
So why am I a mess? Because this means he'll probably be in a Ponseti brace after tomorrow's appointment. The brace is basically two specially-oriented boots attached to a metal bar. The purpose is to keep the feet in the corrected position. He'll need to wear it 23 hours per day for three months; after that, we'll go down to nighttime wear until he's at least two years old.
I know this is necessary. I know it's for the best. I know (or hope) that he won't even realize the brace isn't "normal." Yet I'm a total mess tonight. E was sleeping on me, all awkwardly scrunched up as newborns like to be, and I realized he won't be able to snuggle up with me like that with the brace. He's a great sleeper now, but I don't know if he will continue to be with the brace. And how will breastfeeding change with him in the brace? I'm so freaked out and sad. I know no one here can really empathize, but I had to write this out.
Wednesday update: We had our appointment today with the orthopedic surgeon, who took a look at E's foot and verified that we will not need the tenotomy, and that this fourth cast got the foot to the point it needs to be in to start the brace. We then met with orthotics to get the brace fitted and be trained on how to massage his feet and properly put on the brace. We'll need to do the massage three times a day. E was a bit fussy when his foot was messed with, but to be fair that leg and foot have been in casts for four weeks, so he's not used to much sensation on them. Anyway, otherwise things are going well so far. Breastfeeding isn't any different, since he never wanted to lie on his side for it anyway (prefers lying on his back with his head turned). It's been five hours and so far he doesn't seem to notice anything's changed. A picture of my little guy with his "snowboard" (also, he blends right in as a native Seattleite in his socks with sandals. ):
Oh honey, that's hard. The little guy will be fine and probably never realize it's not "normal." Your emotional suffering will likely be more than his. I have no specific advice or suggestions, but wanted to say IT WILL BE OKAY!
Post by karinothing on Nov 6, 2012 22:36:11 GMT -5
Ah. You know what? I put he will still be able to cuddle with you! Kids are amazing and they learn to adapt really really fast. You might just have to do it in a slightly different way, but I am sure the brace won't prevent it entirely.
I am also sure breastfeeding will be fine! Again, you might just have to find another position. It will probably just take a little time for you guys to get used to it, but it will all work out. Hang in there!
Thank you all so much for the encouraging words. I know we'll work through it and adapt. Also, I need to stop worrying about things way in the future--here I am, wondering how we'll ever potty train if he's still in a nighttime brace by then. Talk about cart before the horse...
I'm so sorry Catbus! You've had a lot thrown at you quickly: I'm so glad the casting has gone well and hope things go as well w/the transition to the brace.
FWIW, I apparently wore the same type of brace for about a year as a toddler (according to my mom, it was at nighttime only.) I was a little older than E and I do remember needing a little time to adjust to it, but my mom and I were just talking about it last weekend and I was surprised that I wore it for so long...I hardly remember it: it's just a vague blip in my rearview mirror. Kids are surprisingly resilient: I hope it goes as smoothly as possible for both of you!
Post by SusanBAnthony on Nov 6, 2012 22:57:06 GMT -5
Fun story for you.
The casting method allowed them to be able to fix club feet in less developed countries bc it is so much less invasive than surgery. Yay! But, they were having horrible compliance rates with the brace. Why? Bc traditionally babies were worn in slings pretty much 24/7, which didn't work with the braces. So they started supplying baby bjorn-style carriers (which for a typical child are so much worse for a baby!) but allowed the mothers to wear their babies and also cast. Win-win!
Hugs! I'm sure your baby will still be able to snuggle. Congrats on the success so far!
Is there any kind of support group or FB group for moms going through this? I know with BFing, it's been a lifesaver, so maybe there's something similar out there.
((hugs)) i believe there is a support group on baby center forums for parents of kids with club foot.
my SIL was able to BF my nephew for a year despite the brace. It has never bothered him, it's just his normal and now at 2 y/o he's running around all over the place.
I had casts and the brace for that long stretch of the day while I was young as well. I remember none of it. He won't either. You will get through it. And I really don't think he will understand it isn't normal. He will just accept it. Babies are good for that.
Hugs, Catbus! I agree, kids are resilient and you will make it work. I had to wear large braces for hip displaysia as an infant, and it somehow all worked. It sounds like your son is receiving great treatment, and I'm so glad to hear that he's responded so well to it.
Love of my life baby boy born 11/11. One and done not by choice; 3 years of TTC yielded 4 MMC and 2 CPs, through 4 IUIs and 2 IVFs. Focusing on making the world a better place instead...and running.
Thank you all so much for the encouraging words. I know we'll work through it and adapt. Also, I need to stop worrying about things way in the future--here I am, wondering how we'll ever potty train if he's still in a nighttime brace by then. Talk about cart before the horse...
Hugs. I hope the transition is smooth for you both. Also, in real life, I know of only one boy who potty trained at 2. My son is 3 yrs. 3 months and is just now starting to use the potty during the day. It seems like we are light years away from training at night.
Hugs. I think it's totally normal to mourn losing the way things are right now, and I'm sorry you're going through this. But I am certain there are still many snuggles in your future!
Post by MadamePresident on Nov 7, 2012 9:52:32 GMT -5
It will be fine. As a toddler my husband was in a car accident and his leg was broken. His family tells funny stories about how he would stand on his head.
Your little one will be fine and still cuddle. You guys will make it work.
I'm sorry. My niece was born with 2 club feet and wore that brace at night until she was 3. Fwiw, she did not know any different and never objected to it. My BIL and SIL called it her "night night shoes". The doctors say that her feet are now more perfectly shaped than the average person.
My ds has clubfeet and I have found the baby center support group very informative. Some kids don't even bat an eye at the brace, my son could care less. It seems even when they dont like the brace initially they get used to it before too long. It was a little weird at first but he still snuggled just fine! He's actually on a "treatment break" right now as one foot isn't ready for the brace but wasn't tolerating the casts well. So we're in limbo right now before he gets back into the casts and/or has more surgery. So even though it's a bummer, the sooner the brace goes on the sooner he'll be done. Good luck!
Hugs, catbus. I know this is hard, but it will get better. The toughest part is the transition, but soon this will just become part fo your regular life. You sound like a great mom which is the most important thing for E.
My mom likes to tell the story of when I got my first (of many) back braces at 18 months. She wondered how I would play, if I would hate it, basically thought if all the what ifs. She said they put it on me and I walked immediately to the toy box, bent at the waist, and went back to playing.
Your kiddo will adapt beautifully and find a way to snuggle. I promise!
Thank you all for the encouraging words! I really do appreciate it. And I had forgotten about the BabyCenter support board--I'll check that out again. I updated my original post with how today went and a picture.
I follow the blog of a woman whose daughter has the same condition and is also going through the same treatment as your son is. Maybe it will be a good resource for you?