So since I last posted I've made a few phone calls. Thanks to Melissa, Riley and Ross' mom, I feel pretty confident that E is a lot like Riley, and that DAFOs and a walker would be something to pursue. So we see pedi tomorrow, will ask for a referral to the orthopedist, (have the names of 2 great ones in our area) and will likely either get a dx from our pedi or from the orthopedist. I hope to get Edwin fitted with DAFOs as soon as possible and am waiting to hear back from PT regarding the walker.
I will keep you all informed.
In the meantime enjoy pics from tonight!
They are getting sooo BIG!!!
EDIT: I made the appointment with pedi to see about him being seen by ortho...I thought she might get us in quicker. But since I knew the appointment would be useless other than a quick referral (remember months ago her dxing E with CP just for more therapy?) I called the ortho myself to see when they were scheduling. I got one for June 4th, which isn't bad, so I decided to cancell the appoint with pedi, since there was nothing I felt she could offer in terms of a true dx. I also felt it useless since I have got in touch with the developmental pedi from NICU follow-up and the developmentalist and they both said the ortho we'll be seeing is great and would have the capability of dxing him if they felt there was a dx to be made. She will evaluate him to see if she thinks he should get AFOs.
However, I also spoke to PT this am and she feels that we are jumping the gun. She feels that E is making so much progress on his own that putting him in AFOs may limit what he can do on his own. She said the turning out of his feet is normal and the first part of standing, and as he gains strength in his trunk this can correct itself...if we jump to AFOs we won't know what he could have done on his own. So now I'm confused, but have the appointment with ortho for her opinion.
As for the walker, PT felt it is also too soon. She felt he stills needs to strengthen his trunk, with ab exercises and crawling on all fours on the floor. She is so impressed with his progress every other week when she comes, that she feels we should give him more time before we go to adaptive devices. While I hear what she is saying, I'd like to see how he does with the reverse walker, since he'll be forced to stand up straight and use those ab muscles. She said she would bring it next time.
She was also quick to tell me that she had thought of AFOs and a walker for Edwin but thought we weren't at that point yet. I think she felt a little insulted that I brought these things up, since although he may had thought of them never mentioned either to me. I think she thinks I'm that annoying mother that reads too much online and tries to come up with ideas, when it's not my specialty. Fair enough, but I'm just trying to do what's best for my children, and if that makes me annoying then oh well.
So we'll try the walker next week to see what he does. If I had to bet I'd say she'll give him the session, he won't have time to get used to it, and she'll say "see told you he wasn't ready." We'll see though. And then we'll see the orthopedist on June 4th and get her impression of his tone and his ankles.
So at least I feel like I'm exploring ideas and giving Edwin the best chance possible to become mobile like his sister, who every day gets more and more confident with her walking. I just don't want my poor guy left out standing up against the couch as his sis takes off if he truly does have the capability to be up "walking" around with her. So I'll of course keep you all up to date.
7 comments:
Look at all of Edwin's teeth!!!
They are so beautiful Stephanie... they seem so incredibly close and happy.
Smiles,
Randi
Glad to see you in better spirits! Hope the appointment goes well tomorrow. E is lucky to have you as his mom.
They are getting cuter and cuter each day. The picture of them playing together is precious!!!
Man.....those are some CU-UTE kids!
You are "that" annoying mother. The ones that I complain about having to deal with in school. But you know what, your are their mother. And you are always going to have their best interests at heart. What the therapist needs to do is take a step back, let you explore things that could help. If they work, fabulous, if they don't, then you figure something else out. So don't worry about offending the PT. While physical therapy isn't your specialty, your children are. And sometimes we therapist really forget that!
As for the orthotics, I do disagree with her that youa re jumping the gun. She says that you wouldn't be able to see what E would have been able to do on his own. So? If you give him the support and he learns the skill, who cares whether or not he would have been able to do it on his own in time. What matters is the ultimate goal/objective/outcome. And that is walking.
When Caitlyn's PT mentioned getting orthotics, I was quite surprised because she could stand, cruise, etc. BUT, the PT was quick to tell me that while she could do those things, her feet were pronating in. Which in the long run could lead to other issues with her hips, etc. Once she mentioned it, I could see it. Her advice was to get the orthotics so that as Caitlyn learns and perfects the skill, her entire body is in the proper alignment. Once she has acquired and mastered the skill, we could then lose the orthotics. Which is what we did. You always want them to learn the skill properly so that they don't fall into bad patterns and habits.
You're doing the right thing! Keep doing it.
Thanks for the feedback guys.
Nancy, I agree with what you are saying. PT's rationale was we wouldn't know what the AFOs were doing versus what he could do if he relied on the AFOs instead of waiting to see if he corrects it himself. But I believe the ortho will be a better judge of that, especially since I agree he could develop bad habits that will be harder to break as time goes on.
Thanks again for your help/support/advice everyone!
I always feel like 'that annoying mother,' too. DH says it's because I am that annoying mother lol!
Anyway, as far as the therapist is concerned, you should be double-checking. It's perfectly okay in the medical community to get a second opinion, so why not therapy?
And BTW, they are so cute! I love their curly/wavy hair!
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