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The Story of the Delivery
March 19, 2011 // 56 Comments -
Guardian Article
November 14, 2009 // 36 Comments -
What's God's plan for May?
November 25, 2011 // 35 Comments -
Milestone for May! Her first steps! (VIDEO)
July 18, 2012 // 27 Comments -
The Amazing Half-Brained Baby blog has been taken over. ...
January 30, 2011 // 24 Comments -
May made me cry today. My amazing half-brained baby.
September 19, 2011 // 24 Comments
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Why I'm grateful for socialized medicine
June 13, 2013 // 4 Comments -
Scenes from the hospital
June 7, 2013 // 4 Comments -
How is May post-op?
June 5, 2013 // 13 Comments -
Tomorrow is the day I've been dreading
June 2, 2013 // 12 Comments -
The one good thing that happened between all the puking ...
May 30, 2013 // 1 Comment
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You have been in my thoughts over the last two wee ...
June 16, 2013 -
I can't believe how much older May looks in that p ...
June 16, 2013 -
It is nice with all the NHS bashing going on out t ...
June 15, 2013 -
Stacie, Very happy to know that the surgery was s ...
June 14, 2013 -
Thanks for this - I'd love to contradict you and s ...
June 9, 2013
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Thanks for entering!
Autumn in May
Nothing better than an Autumn stroll. If only everything about this season was as full of joy as May’s smile when her stroller crushes crispy leaves.
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.
Grrr.
Okay, enough grrr.
If you look closely enough in this photo, you can see the two culprits in all these shenanigans.
I am so glad you stuck to your guns. I am sure beyond any doubt that you are already ahead of the dietitians and therapists. I think any food at this stage that May eats or gums is fine. Junk food is even okay in my mind. My friend has an autistic child and I know she douses everything in olive oil whether he needs it or not. High in fat and good in all ways. That is the only advice I have and it isn't even my own. Keep on keeping on Stacie- you know your child.
Stacie you have hit on a raw nerve here for us! We have a son now just turned 4 on the Autistic Spectrum and over the past 2 years have had lots of issues with him feeding and the strain of food round his mouth. I really wanted to see a dietician... We were finally referred. Raffy was just starting to get interested in food, doing a bit of chewing, taking fluid from a spoon, all good positive steps. She was awful. She was obsessed with the fact he wasn't having eggs (he's always had a reaction round the mouth) and said it was crucial we supplemented with an egg replacement. Then she wanted me to measure/weigh everything that passed his lips. This is the boy who was so stressed by even the sight of food he would scream and hurl it at the walls most days. I cried after the first phone call she made me feel such a bad mother. We'd been through hell with our boy and nobody had even been interested. Another bullying phone call later and I decided to terminate the appointment. Our boy is doing well and we have resisted having another of these so-called experts involved in his care. You have done the correct thing! You know May and kids pick up if you are stressed over food prep. Also they need play, stimulation and love not a parent stuck in the kitchen all day...
I totally agree. A bit of perspective by some professionals would not go amiss.
I really like your blog, and the honesty with which you share your struggles on the way. I hear mostly achievements though, claiming your voice, strength and victory. May's a beautiful girl, thanks for sharing her with us!
I think my granddaughter is gorgeous (not at all prejudiced!), and a perfect size, with delicious polkalas. May is obviously happy and content and now she will have all she wants for Christmas is her two front teeth grown in, ready to delight in a "homecooked" feast. So there! XOXOXO
These therapists..... No honestly, I do think that by and large they are book taught. Real people, especially children are individuals. I haven't had 2 kids be the same. You know your daughter, listen to the advice and interpret it for your circumstances.
Keep going Stacie you are doing a great job It is lovely seeing the progress May is making and I look forward to seeing her again soon
Weight always seems to be an issue for kids with CP, there's a whole other height/weight chart that can be used. Less muscle mass, less bone density, oro-motor dificulties and using more energy to do less work are all factors. Also you definitly don't want to be too big if you're learning to move around, slender is better! I'm sure you know all this, I'm reminding myself here as well, Emma has been cutting teeth and I keep telling myself this is just a baby issue rather than a CP issue! Sounds like the dietician could do with brushing up on her communication skills!