retinoblastoma · Uncategorized

Well done Doodles, Again!

Another successful eye check up today. This was our first at The Royal Hospital for Children in Glasgow. Daisy was first in theatre this morning, which is great as it makes for a shorter day. She is currently in recovery snoring her little head off. It’s a great set up here. They have pre-theatre playrooms where no one is allowed to eat or drink. Very respectful to the children who are fasting. I think it creates a better atmosphere for the children too as they don’t have to go to a ward first. It’s less hospital like for them. Not that it bothers Daisy much. The staff are all lovely and friendly here too. It takes a very special person to be a nurse. I’m sure I’ve said it before but I bloomin love nurses. Big shout out to all you nurses out there going about your business in that bloody marvellous way that you do.

They weighed Daisy this morning and she hasn’t gained any weight. I guess at least she hasn’t lost any. I am hoping it might just be the scales. Wishful thinking probably. It’s frustrating as she is definitely getting more calories in her blends than her milk, and she isn’t bringing them back up. Maybe it’ll just take a bit longer for the effects to show. Time to add more avocado and cream to her blends I think.

One of the reasons I started this blog in the first place was to reach out (hate that phrase, but couldn’t think of another) to other parents who have children with chromosome deletions. This week I have been in contact with another mum who has a baby boy who has been diagnosed with a 13q chromosome deletion like Daisy. It’s lovely to be able to help and share information with her. I know how frustrating I found it trying to find out what the deletion would mean for Daisy. And she is a friend of a friend of my cousin. This world is so small these days!

I also got a message of encouragement from another mum who has a 9 year old with a slightly different chromosome deletion. She was telling me he is breaking down walls and beating all expectations. I can’t tell you how fabulous it is to hear this. Daisy is beating expectations so far and I’m confident she is always going to.

Daisy is an absolute flirt and prefers men to women. She will be very chuffed later when she realises that one of her favourite men is coming to visit this weekend. He is one of the Tidy Tyrant’s best friends and was staying with us when I went into labour with Daisy. It probably scarred him for life! It’ll be the first time he has met Huxley too.

Huxley is desperate to be on the move and crawl but hasn’t worked out quite how to do it yet. He was staying at Glamorous Grammy’s last night and she took a video of him. I’ll try and share it on the chromawesome kids site for those of you who haven’t seen it.

So all in all a good week in Stov HQ. The vom count for the week was only three. And because the blends are much thicker than the milk, they haven’t been projectile in nature and can be caught in a muslin. Thus the services of Mrs Mop have not been required. Every cloud.

 

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2 thoughts on “Well done Doodles, Again!

  1. You lovely lot!
    One thing about the weight gain- Daisy had been much more mobile, right? I know it is massively different but O was slow to gain weight when she started crawling and walking and it was bevause she was burning more calories. Try not to worry too much. Olive oil is a good one to add to stuff too.

    Liked by 1 person

    1. She does move about a bit more. It’s those trainers; I should’ve expected this to happen 😂😂😂😂😂😂. I will add olive oil and think of little Olive every time I do 💕 xx

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