Site Map

Home

For new families

Hydranencephaly
Information 


Our Rays of Sunshine

Resources in caring for a Child with Hydranencephaly

Physical Care of a Child with Hydranencephaly

Health Conditions

Prenatal Diagnosis

For Grieving Families

Difficult Times Pt. 1: Taking Care of You

Difficult Times: Pt 2: What If?

About us

News

Meet other families:




 

Contact a Family

Hydranencephaly Message Board

Book: Caring for Your Child With Hydranencephaly

Hydranencephaly data base

 

 

 

Care Plans:
Drew

Karin, mom to Drew, Adrian, Cookie, Lawson, & Tucker uses these “rules” to help people know how to care for Drew:

Drew's Rules are pretty basic, not a book like Ryan's Rules!  Now remember, if you make any "Rules", their Royal status must be mentioned at least once!

Drew's Rules

1. Drew is the King!  He is to be treated as royalty

2. Drew is not to be hurt by any treatment or therapy.

3.  DO NOT leave him alone if he cries; he needs to feel you there with him.

4. Speak to him before you touch or move him.  He cannot see so he needs to know what you are going to do.

5.  If part of him is cold, cover it.  If it's warm, uncover it.

6.  NEVER scold Drew, he does no wrong.

7.  NEVER move him roughly.

8.  Don't leave Drew alone on the couch or changing table.

9.  Drew is to have nothing by mouth, ever.

10. Do not leave Drew alone for more than a couple minutes at most, at least be in range to hear his monitors.

11. ALWAYS wash your hands before and after touching Drew or drawing up his meds, germs can be deadly to him.  Remember too that he has MRSA and it is easily spread.

12. Make certain he is positioned properly in his wheelchair and that the belt or chest restraint is not mashing his G-tube.

13. Drew is blind, he is not deaf.  Speak to him often and as if he understands your every word.

14. Don't allow him to sit with his back rounded and head forward, he cannot breathe well like that.

15. Remember that Drew is a gift to us and this world directly from God and that he can be taken back at anytime....

 

Other pages in this section:
Care Plans Intro

Care Plans:
Kayda
Pauli

 

Subscribe to the Hydranencephaly Mailing list

August 16, 2001- January 12, 2005

This website is funded in loving memory of Jason S. by his mother Kammy

The information on this site is provided by families, caregivers, and professionals who are or have been caring for a child with Hydranencephaly.

Please report any broken links or missing photos to angelbearmom@shaw.ca