Stacie Lewis’ experience raising hell…
... erm, raising a little girl with severe brain damage. The blog began in 2009 when May was 4 1/2 months old.
Currently, May enjoys bouncing and the dulcet tones of dub step.
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May in the news!
- March 19, 2011 // 56 Comments
- June 21, 2013 // 45 Comments
- November 25, 2011 // 37 Comments
- November 14, 2009 // 36 Comments
- July 18, 2012 // 28 Comments
- November 6, 2012 // 27 Comments
- March 6, 2014 // 0 Comments
- March 3, 2014 // 2 Comments
- February 28, 2014 // 4 Comments
- February 25, 2014 // 8 Comments
- February 17, 2014 // 2 Comments
- By Mama Lewis, March 6, 2014
- By Zvon, March 6, 2014
- By Rv, March 4, 2014
- By Mama Lewis, March 4, 2014
- By Claire Stockton, March 4, 2014
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Posts about May on BabyCenter!
A bit of praise but is it art? CP Info Dealing with Doctors Fun with May Giveaway Hip surgery Hot Air Ieuan Kids all access... London Leukemia Life with a CP Baby Lycra (Supergirl) Suit May vs The Hospital May's History Medical Records Music Not special needs. More like NEED IT. Nursery Physio Potty Training Preschool Seizures Sleep So-called experts Success! This week I'm... Transportation Visual Impairment
Autumn in May
May’s weight, or lack thereof, has her therapists in a tizzy. It’s been low, but I did manage to pile on some pudge on May over the summer.
Unfortunately, the last week has undone all my good work. A double teething achievement (all I want for Halloween is May’s two front teeth – done!) plus a particularly nasty cold, turned May off food completely. I felt so helpless as I watched her legs shrink and those delicious rolls disappear.
Yesterday, May’s SALT and a dietitian, visited May at nursery. When I arrived at the end of the day to pick May up, May’s key worker was enthusiastic about their advice, but in a mild panic about her weight, inflamed by the experts.
This did not enthuse me. May’s key worker said they wanted to arrange a home visit to discuss it with me. I wasn’t impressed with the snap judgement that something was wrong.
My previous experience with the dietitian was not helpful. If anything, her visits caused me undue stress. So, it was with reluctance that I agreed to the nursery visit and only because I know they sometimes have trouble feeding May.
After speaking with my husband, I decided not to see the dietitian myself. I had an email all prepared to this effect, but before I could hit send, she phoned me to make a home visit.
“I appreciate the help you are giving to the nursery,” I said, “but really, I feel I already have too many professionals involved in May’s care.”
The dietitian wasn’t happy. She sounded surprised. “So, you don’t want advice on feeding at home?”
“I’m aware there is a problem with May’s weight, but this is due to illness and teething. Unfortunately, not everyone is able to feed May well, but I don’t have any problem. I feed her fine.”
I felt uncomfortable, after all, what parent turns down help for their child? But, that all dissolved as the dietitian, in a repeat of a year ago, began a rambling list of all the things she felt I needed to do better.
“But, I thought I would advise you on things to eat, like adding butter, cream and cheese to all meals–”
“I do that already,” I said.
“And, I thought I could provide some assistance with homecooked meals. This is very important. She should be receiving homecooked meals.”
That ticked me off. I don’t often write about therapists in this manner, but I felt this was a completely irresponsible thing to say to a parent of a severely disabled child. As a year ago when she insisted – based on no research – that microwaves should never be used, the idea that homecooked meals are imperative to my daughter’s development is rubbish.
When you have a child like May, or any child actually, how do you find the time to cook homemade, baby friendly food every day, every meal without a microwave?
The answer is: you don’t.
And, if I did, what would we be sacrificing? What would May be doing while I prepared these meals? Not stretches. Not reading a story. Not splashing in the tub.
If you look closely enough in this photo, you can see the two culprits in all these shenanigans.