One of the most beneficial things we can do as a group is help each other on tips and tricks around being a parent of a wolf-hirschhorn child. For us, one of the scariest things that we faced with Kendall is wondering how to effectively care for her feeding tube and Mic-key button. So, we decided to video tape the changing out of her button so others can see how it’s done. It took us a few trips to the hospital and ER to realize that we gotta give this a try on our own. At first, it was a it touch and go, but now it’s just another easy task required as part of her care.

I do want to make note that this is not something that we recommend that you do by yourself if you are not comfortable with it. Make sure to get clearance from your doc before going at it on your own. This is only an example for those that want to see how it’s done and wolfhirschhorn.org is not liable for any button changes that go awry!

Hope this helps!

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3 Responses to How-To: Changing a Mic-Key Button

  1. shirley bidnick says:

    Now I am fully updated on Kendall. The button demo was nicely done. I am looking forward to watching Kendall grow. Thank-you for sharing her life with us. I also watched ‘you tube’clip,titled Our Children. It took my breath away. I will watch it over and over. I was thrilled to see the 62 year old woman with WHS. I needed to see her.

  2. Antonella (Evelina's Mom) says:

    This was very helpful for me. Thanks for sharing Kev! Evelina just got a Mic-key three weeks ago and my fear of it falling out and what to do has had me really uneasy. Looks easy enough. I used to insert her NG tube all the time. This looks like a breeze (sigh). I guess we all become mini nurses/doctors 🙂

  3. Christy says:

    I knew how to change Kendra’s for yrs…glad ur showing others

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