Strange title to my post ? These 3 words mean so much in our house, I have sung them more times than I can care to imagine. But why ? Actually for both my children, as both my babies have struggled with eating and feeding, I couldn’t believe it when we had Addison that we were having another child with feeding issues, I felt punished, silly I know but if you lived my life with Grayson’s feeding for just one day I am sure you would feel the same. Addison still has her issues, but slowly we are overcoming them, not all can disappear as like her Mummy and Uncles she has some issues with dairy but that’s ok.
But this post is more about Grayson, he has not overcome his feeding issues and this week it has become apparent he may never do.
You see Grayson had his yearly Developmental Assessment this week, for anyone without a disabled child this is a meeting of your Pediatric consultant and when they get to just before school age it includes their therapists too, in Grayson’s case it was his Speech/Communicative Therapist and his OT (the others are AWOL), they discuss their progress over the past year, medical concerns/issues and plans for the future.
These appointments have always been life changing, on his 1st our doctor told us Grayson had Brain Damage, his 2nd that we could only hope to strive for him to have an independent life at best, his 3rd that he was showing signs of being highly autistic and not likely to ever be independent and then to the latest.
I foresee Grayson being on puree food for the rest of his life, we next year will discuss placement of a feeding tube.
This to most may seem so unimportant in comparison to the years before, but honestly this froze me in this meeting, it made me feel a chill from head to toe and then made me sob like a baby the day after.
My little boy balances on a day-to-day basis with eating enough to even survive, he is currently the weight of an average 2yo at best, according to his paed he actually gained 3lb less than he needed to just keep up brain growth, all this is terrifying but not new, he has been grossly underweight since he was 4 months old. But we have pushed through this, our Doctors always commended us on how we have fed Grayson, we only once had the assistance of a feeding tube and he actually lost weight on it as he forgot how to eat orally.
But this has been no easy fight, from Birth to 1 year Grayson was bottle fed every 2 hours religiously, not 2 hours between end of feed, 2 hours from start of feed and he would spend 30 minutes per feed, this went all through the night too, I am not sure how we survived, I look back on those days and remember I never complained about being tired, I was just over the moon to have my little boy and to be keeping him alive after loosing him too many times to count.
At 4 mths Grayson started solids, this was with the encouragement of doctors as he was at 4mths only just over 6 1/2 lbs. By a year old not only was he on 10/12 milk feeds a day, he was also on 4 solid feeds. At 2 we had managed to drop milk feeds and he was only on 1 middle of the night feed, it was amazing, but he was still on puree, by 3yo we were only on 4 milk feeds a day but the task of feeding had become difficult.
Grayson’s feeding diet is currently like this at 3y9m.
5/6am – Milk (prescript high calorie) in a bottle – 100ml – 15/20 mins – occasionally holds himself
7am – 2 Yoghurts + Biscuits – 15/20 mins – fed to him
9.45/10am – 4mth purred jar, plus a few crisps – 10/30minutes – jar fed to him/crisps fed himself
Between 11am-1pm – Snacks eg Crisps/Chocolate/Biscuits – broken into tiny pieces, sometimes can not be swallowed so gets sick
1pm – 4mth purred Jar + Chocolate Moose – 20/30 minutes – all fed by us
4.30pm – 4mth Purred Jar + Angel Delight/Custard + Ritz Cracker + Chocolate – 30/40 mins – all fed by us
6.30pm – 1/2 bag crisps or baby biscuits – fed himself
7pm – 1/2 yoghurt – 15 mins – fed by us
7.45pm – Milk in a bottle – 100ml (at best) – 15 mins – occasionally holds himself
It’s horrible, it’s an unhappy process on every feed, Grayson tires very quickly during meals, he suffers with a stomach emptying issue so in his head he is always full, he has never once shown signs or communicated hunger, I have tried making purees, I have tried mixing shop bought purees with my own, but he just stops feeding, he only eats disgusting orange baby food, before you think I am a bad parent with what he eats, Grayson’s diet is all about getting as many calories in as possible, it’s about finding tastes he likes and letting him eat as many much as possible before he is sick.
He also has a powder called Duocal added to all feeds to up the calorie content, as well as melted butter, when I say crisps, I mean Wotsits/Skips etc.
Grayson you see does not understand the concept of chewing to swallow, after singing the “Chew,Chew,Chew” song, he has now learnt how to Chew, it’s the cutest Chew you have ever seen. So delicate, mouth closed and concentrating intently, but that’s as far as he gets as he doesn’t swallow, they put it down to 2 causes, one his tongue is too weak to push food to the back of his mouth and 2, more frighteningly, he spent so many times aspirating food into his lungs in the past that he is now too frightened to swallow, so our Paed made the statement above that she foresees Grayson to be on puree his entire life.
No member of my family apart from Ashley and I can get Grayson to eat a full meal, if he misses a meal he literally drops in weight that day, when he had a cold a couple months back for 3 days and ate less he actually lost 2lbs, can you imagine? That’s like a grown adult loosing 2 stone, so food is all about keeping him alive, I mean that’s what food is about for all of us, but let’s be true to ourselves, the majority of us LOVE food and we eat for pleasure, I myself am about 9st overweight so I know I LOVE my food way too much, but that basic right has not been given to my son and it’s sad.
An amazing video of Grayson feeding himself Choc Moose 3 yrs 2 mths
You see him chew food and he looks so happy and then the fright appears and he can’t swallow, it is so sad to watch, he stares at our plates as we eat, with puppy eyes, every time this happens I kid you not a little bit of me dies I am sure.
So I apologise this post is some what just a ramble, I am struggling to come to terms with our latest news, the fact that my beautiful boy is being denied another basic life skill, that I shall spend the rest of my life getting upset when he doesn’t eat, routine going anywhere out of the house around feeding times, only actually going out on occasion as he doesn’t like to eat out of the home.
I love my son and I am thankful every second of everyday for him, but I am SICK of our everyday.