Skip to main content

when is a comment more than just a comment?

 

When it’s jam packed with practical and seasoned advice, that’s when! 

 

And is the express reason why I’m both publishing this comment on the post for which it was intended (a post & comment dialogue worth reading here) and creating it into a post of its own.  So that the wealth of information is not lost in comment-ville.  To never again see the light of day. 

 

“This discussion is very informative and lively. My late comment will be about what I know...position changes. I am a big advocate of diaper changing in standing.


I wrote about it here (near the end of the post):
http://www.therextras.com/therextras/2008/09/tips-from-my-several-hats.html

What I forget to mention in that post is - try to have the child face a wall, hands on the wall, parent working behind the child. A mirror or other distraction can be on the wall at the child's eye level.


I do think there may be a vestibular (sensory) discomfort from laying down but that would near impossible to support with 'facts'. You all are doing a great and difficult job interpreting your child's behavior.


I also think nutrition has an effect on growth. I wrote as much as I know about that here:
http://www.therextras.com/therextras/2009/06/you-are-what-you-eat-.html

And, I think 'the brain' has to do with (lack of) growth. The pituitary gland is in the brain. Can you ask your MDs about the effects of meds and seizures on that gland?


Barbara”  

 

I have linked Barbara’s blog here on Trevy’s before.  That’s because I have grown to trust her.  And deeply appreciate her personal and professional wisdom.  So much so, that I might just try the hands to the wall diaper change approach.  Maybe.  You know.  If Trevy’s not suddenly miraculously potty trained by tomorrow morning! 

 

…danielle 

Labels:

Comments

Anonymous said…
Thanks so much for the shout-out, d!

I would love to read some feedback - from parents who have tried diaper-changing in standing.

Anyone?

Barbara
May 31, 2011 at 3:50 PM
Danielle said…
I haven't tried yet...but when the Miralax starts doing its job I'll report back. :)

...d
June 1, 2011 at 4:58 AM
Post a Comment

Popular posts from this blog

a different kind of muscle — guardianship process

  To all the parents who have walked through the guardianship process — my heart is with you. Our paperwork is prepped and ready to submit this week. He turns 18 on April 3rd. I've been thinking about this for a year now, but only just mustered the energy to move forward — the loom of his birthday my propellant. Overwhelm has paralyzing effect. I'm struggling to recall the last time I didn't feel overwhelmed. It struck me how all these years of walking through disability beside Trevor should have made me stronger and yet... I suppose it's a different kind of muscle being developed.
1 comment
Read more

No, I don’t know him personally

  I’ve had several emails today asking if I know Mike W. of Marissa’s Bunny personally.    Trevy’s blog was linked on her site.  Although it’s not now.     I’ve posted here and there at his request.  Because…well…we’re a community.  Us IS families.  And Marissa is wicked cute.  Her daddy has a way with words.  Also who wouldn’t want the world to know about an iPad give-away?    But aside from that…I know about as much as you do.    We’ve never met in person.    Our only communication has been cyber.    I’m a ginormous sap and as such would love to believe that all is right.  That the sweet, beautiful families who were promised iPads will be getting them tonight.  Tomorrow at the latest.  That no one has been lied to.  That the personal thank you for your generosity email I sent him on behalf of other IS families I’ve grown to love and was thrilled to learn w...
23 comments
Read more

the great answer hunt in the land of Infantile Spasms

If I've said it once... I've thought it a million times more. How it's like the more I research...and discover...about IS. The more blurry everything becomes. For every answer found. A dozen questions are unearthed. Remember our whole ARX saga ? Yeah...that threw me for a loop. So much so...that I never went on to post the end of the story. Thus far... See...the unbelievable in the world of genes happened. Because this is IS-ville after all. After Dr. Genes sampled Trevy's ARX gene on a whim...a whim which revealed an unkown (meaning the first time this specific change was found) mild mutation...she proceeded to send Toby's blood off to mad scientist central. With assurances that this was totally unnecessary . She was convinced that Trevor's ARX mutation was the underlying cause of his Infantile Spasms. And that Typical Toby...would prove to be just that. Typical...at least in all areas mutate-able. And yet...Toby's ARX blood sample revealed THE SAME MIL...
14 comments
Read more