James got his brace Thursday afternoon and it has been a very trying 48 hours to say the least. He's been real sweet about it which makes it all the more pitiful. He hasn't tried to take it off, he doesn't scream or fuss when we put it on him. It's almost like he knows he has to wear it. But at the same time he isn't handling it very well emotionally. He has had several break downs since we got home with it, especially last night when he looked at the steps he had to go up to get back inside the house. Jon said he just fell to pieces. It's hard for him to walk with it because it's odd and a little bulky. He's real clumsy and his feet are spread farther apart than normal while he walks but his foot does stay flat on the floor all day! Our therapist (I say "our" because she has really become more mine than James' lately!) said it will take at least 2 weeks for him to learn how to walk in it(i.e. gain more balance and bring his feet together) so in the grand scheme of things two weeks isn't two long. And it will all be worth in one day! That's what I keep reminding myself. I'll be honest, it's very hard to watch him struggle with it. It tugs at my heart strings in a way that I can't even begin to describe. It's such a HUGE adjustment for the little guy. For all of us. 
He has a schedule for wearing it but that's only gonna last for a little while. He wears it for two hours then takes it off for one hour, etc. till bed time and he doesn't have to wear it right now while he sleeps. He will eventually though, at least that is what we have been told. Maybe he wont.
Eventually it will be a 24 hour thing. Only to be taken off at bath time. This is basically all the orthopedist told us at our visit and while we were checking out at the desk I started freaking out about our beach trip imagining the poor little guy not being able to swim or do any fun stuff while we're there. My level headed husband went back and asked him if he could take it off to go swimming when we are at the beach. He said of course and went on to explain to Jon that if there is something James wants to do that he can't do with the brace on, then take it off and let him have fun. Now that makes a mama feel better but I just don't understand why some doctors don't feel it necessary to share little bits of info like that. Honestly.
He has a schedule for wearing it but that's only gonna last for a little while. He wears it for two hours then takes it off for one hour, etc. till bed time and he doesn't have to wear it right now while he sleeps. He will eventually though, at least that is what we have been told. Maybe he wont.Eventually it will be a 24 hour thing. Only to be taken off at bath time. This is basically all the orthopedist told us at our visit and while we were checking out at the desk I started freaking out about our beach trip imagining the poor little guy not being able to swim or do any fun stuff while we're there. My level headed husband went back and asked him if he could take it off to go swimming when we are at the beach. He said of course and went on to explain to Jon that if there is something James wants to do that he can't do with the brace on, then take it off and let him have fun. Now that makes a mama feel better but I just don't understand why some doctors don't feel it necessary to share little bits of info like that. Honestly.
We are off to the beach tomorrow after church hopefully for a week of fun in the sun! We are really looking forward to taking them this year because they are at such a fun age(make you want to poke your self in the eye sometimes though)and I really think James will be much more tolerant of the sand this time around. I hope so anyway!!!
10 comments:
Poor little Jamesy!! Love the brace though!! It does take a little while before they are used to it...Nathan started walking like a pro with it on within a couple of weeks. Hang in there, girl.
I know our muscle issues are a bit "opposite" of your's, but this is what we have been told by our docs: wear the orthotic for a majority of the day until they get used to it. And then, make sure you put it on for a good portion of the day, but also let them run around with nothing on at all. You don't want them to become TOO DEPENDENT on the orthotic (granted, this might only apply to hypotonic kiddos and not hypertonic ones).
For what its worth, our orthotist told us to leave it on him all the time except when he sleeps and our docs told us to give him some time each day without it on. After you get used to it, you'll know when he needs it and when he can go without it. For Nate, we know that if he is tired, he DEFINITIVELY needs it or he will be falling everywhere. For James, you'll know he needs it when he is walking on his tippy toes all the time. It all comes with time and experience.
And yes, you can let him run around the beach without it on. Having it off for a day or two will not cause harm at all.
Love you guys!!
Oh, and for what its worth, I HATED seeing Nathan wearing the things for the first few days. I cringed when I put it on him for church the first time because I knew that others would see it. But now, it is just a part of the everyday thing...everyone we are around on a usual basis doesn't seem to notice it anymore. It grows on you too. :)
I love you james. Hannah
Hannah and I just read the post...What can I say? It's hard to think about all that he especially but all of you, will have to go through but when I think that he could easily be in a wheel chair and that he will be able to walk...I'm thankful! You are doing such a wonderful job with him.
He is so blessed to have you as his momma...
Have fun at the beach...We love you so much!
Amber, if it's one thing I've learned through this journey with James is that things aren't always as they seem. Sometimes that's good and sometimes that's bad. The orthopedist was very addament(?) that James eventually wear it 24/7 and that he'll have to wear it till he stops growing which is like 17.Boy oh boy. Well our therapist said (like you did) that we will just have to see what works for James with the wearing schedule and she doesn't think he'll need it that long.I like that a whole lot better than "He MUST do this for 16 years or longer"!
It does get aggrivating when you have so many people giving you their professional oppinions and most of the time they don't match up. But then again another thing I have learned not just with this but being with being a mom, you ALWAYS go with your gut instict.
Cannot wait to see you guys in 2 weeks!!!!!! STAY WELL PLEASE! Oh and thanks for sharing your thoughts. It's always nice to hear from someone NOT in the medical field that knows what I am talking about!!
Nelda tell Hannah James loves her too!! It is so hard to watch walk in that thing but I too have thought about the wheelchair, not being able to walk at all. So it could be worse!!! Love you bunches!!
I think y'all are the most wonderful people I know...all four of you. I love you
My heart crunches for James but mostly for you and Jon. And, as Nelda stated, he's M-O-B-I-L-E. And, with the use of his "walking-aid", it's not a lifetime ordeal. And, I know you know all this and I know you and Jon are grateful for the blessings of James and Audrey. And, I've known lots of Mommies and Daddies in my life but, the courage and bend-over-backward LOVE exhibited and expressed in your words, 'manda, is the most beautiful painting of Mama-hood. You inspire me. And, with each tho't of you and your family, I thank God. Now, PLAY in the sand, won'cha? Have a BLAST!
Seeing the pictures of James wearing his little brace brings back so so so many memories of the braces my daughter wore when she was his age. Best of luck to you all in getting adjusted.
I would like to share a tid-bit of info with you. At some point you will hit a difference in shoe size. The foot wearing the brace will require a bigger shoe than the one without a brace. When buying shoes explain to the salesperson why you need two different sizes and they are usually pretty good about mismatching a pair for you without causing you to buy two pair. They can send a pair back to the distribution center as mismatched and will not be out any expense and you won't have shoes that don't fit lying around.
Just got over here and all caught up on y'all. The babies are growing so fast! I can't wait to see them in a couple weeks. Hope you have an awesome beach trip!
One of these days (once we're moved back to the US) we'll have to take a beach trip together . . . I have quite the happy little beach bum on my hands these days! (I think she's going to miss it big time once we're back in Iowa and not Brasil!)
I love so so so so so so much
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