ladylaureli

As a parent of a special needs child I have to say what you are doing is so amazing. What a thoughtful list you have put together! A lot of people dont even realize how much the costs for these additional things really add up. In case you are looking for ideas, I have a few more suggestions for your list. Plastic storage bins of various sizes, cloth zipper bags of various sizes, backpacks/bags to carry supplies on the go, and squeasy sport brand silicone bottles (a must have for gtube kids).

Zipper bags are for carrying and organizing small suplies on the go. We use them for things like medicines, backup gtube kit, hand sanitizer, syringes, and all those miscellaneous little things we have to take with us when we go anywhere. The Squeezy Sport bottles connect to our 60ml cath tip syringe and so I can draw the formula up into the syringe for bolus feeds instead of having to pour it in the syringe which risks spilling. Some people connect the bottles directly to the extension but that hasn't worked for us.

What is the status of stem cell or other research to repair corneal scarring? My daughter has bilateral congenital corneal anesthesia and is not a good candidate for corneal transplant. She has done the corneal neurotization surgery using sural nerve graft on one eye and we are planning the other eye next month.

What advice would you give to avoid burnout for parents/caregivers of children who have multiple complex disabilities? My daughter is 11 and is deaf/blind with cerebral palsy, intellectual delay, autism, and multiple other medical diagnoses. I have given up so many of my own dreams in order to ensure her needs are met. Sometimes I am overwhelmed with grief and anger and self pity and these feelings get in the way of me being the kind of parent I would like to be for her.