I don't post as much on here as I used to, so many of you all may not know me anymore.
Short run down: Lily is one of triplets and was born typical. At 4 1/2 months old, she had a very severe global anoxic brain injury caused by RSV meningitis. She is completely non-mobile, legally blind, non-verbal, is 100% GJ tube fed, will be starting TPN soon, and so on. Physical ability is like a 0-3 month old. (www.caringbridge.org/visit/lilymathis1
I am currently pregnant and due in June with our 5th baby.
Two of our other children are Autistic as well.
She is generally a very happy child and prefers to just be left alone, in her little comfy corner of the couch. However, she has really bad days where I'm not even able to put her down and even then, she's usually crying when I'm holding her. This doesn't happen often, maybe once a week or so.
I wasn't worried about this before, but have suddenly gotten hit with a slight panic. How am I going to do this with a new baby? How have other parents done this? Is the new baby just sometimes shafted or is the disabled child just sometimes shafted?
I had to deal with three newborns at once and 'turn taking' with them, but this is kind of different. I can't sling both a new baby and Lily and trying to hold a 23 lb rag doll while nursing a newborn is going to prove difficult.
I am her CNA and won't hire a nurse or CNA to care for her (have tried in the past for over a year, not interested in trying again). Same with respite care.
I have hired someone to help with laundry already and we're doing little things to help take some of the household weight off of me.
My dh also plans to take the summer off of school (he's a full time student), but I don't know how much that will help.
Any good tips from parents that have been there through this?