Chromosome Disorders

Glimmers of Hope

Glamorous Grammy and I have been on the second part of a Makaton course today.  I went on the first part about a year and a half ago.  I admit to not using much of it until around the time Huxley was born.  It was around this time that Daisy started paying closer attention to what I was doing.  She is definitely watching me and hopefully starting to take it in, even if she is not using any signs herself.  YET!.  I know it will be a really useful communication tool for both of them as Huxley will likely have delayed speech as well.

But that’s not the point of this post.  One of the great things about courses such as this, is meeting parents in a similar boat to yourself.  I know all parents find it useful to bounce ideas of each other and get solutions for problems, but when you have a child who has some fairly unique needs, it’s not easy to find people who have been through what you have.

Today I met a mum and dad who have a 5 year old girl with a chromosome deletion.  I won’t mention names as I know some people don’t want to be on social media.  We shared some stories of our girls and although they have a deletion on a different chromosome they have had some of the same symptoms.  They have both had a nasogastric tube and then moved on to a tummy button for feeding.  Both have had pretty severe problems with projectile vomiting.  I can’t tell you how brilliant it is to talk to someone that understands exactly what you are going through and can offer some ideas to help.

One of the ideas that was suggested to me is a blended diet.  Instead of putting specially formulated milk down their tummy button, you blend ‘normal’ meals down to a custard like consistency and put them down the tube instead.  Many people have reported that their children are a lot less sick when they are given proper food.  I had heard of this before but have to admit to being wary of it.  My worries centred around knowing whether we’d be giving Daisy enough calories and the right nutrition, especially as we struggle with her weight gain as it is.  The Tidy Tyrant has been very keen to try a blended diet but I’ve been stubbornly resistant.  Who’d have thought it?  Sorry Tidy Tyrant.  Now that I have been encouraged by some parents with experience I am much more inclined to give it a go.  They have given me a link to a Facebook group of parents who are using this diet and I’ve had a quick read and it looks really helpful.  So watch this space.

What was even more awesome about meeting these parents is hearing that their little girl now eats!  On her own!  Without a tummy button!  When you are living them, problems can be all consuming and you can’t imagine a time where things might be different.  I can’t tell you what it meant to me (tear in the eye) to have heard your little one’s story.  You have given me a huge glimmer of hope that one day my Daisy Doodles will eat and this will become a mere blink in her history. Thank you so very much.




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