Perspectives: Sarah and Evie
1.Tell us a little about yourself and your Tubie (please put as little or as much detail as you feel comfortable with)
Hey! My name is Sarah. Mum of 2 beautiful children, Evie who is 13 and Max who is 6 (going on 16!) Evie lives with a rare genetic condition called CDKL5, so life is very challenging at times. She is most certainly a girly who likes to keep her mum on her toes!!
Evie sadly started having seizures at just 5 weeks old, so life with a newborn suddenly took a dramatic turn and our world got turn upside down. After 18 months of tests Evie got her diagnosis. Evie has seizures daily, we have tried so many medications to help but none of which really do the job to help control them. Evie currently has a VNS in place to try and help with seizures which we have had since 2016. We also in the past have tried the ketogenic diet. Evie suffers with her chest pretty badly and would aspirate a lot, so we knew then it was time to get a peg. It took time but we got there. Since we have started blended diet Evie has put on a good amount of weight and is maintaining it well which has been amazing and with recent surgeries its reassuring to know she is a healthy weight. There was a time when the dietician said that Evie should just be on milk feeds which I tried for a few days and hated, I like having that interaction of mealtimes with her and I wanted us to all be able to sit down as a family and enjoy a meal together, especially with Max during the week, it was very important to me.
2. What started you on the blended journey and how long have you been doing it?
We started our blended diet journey back in November 2019. A journey which I look back on now and wish we had started many years before. It really has been life changing.
3. What impact did the blended diet do for you and your Tubie.
Having the tube was literally a life changing decision for us, it made things so much easier and safer. Evie used to aspirate a lot. One time it became very serious, and she ended up in PICU and we got introduced to the NG (neither of us liked it but it was a good starting point and much safer for Evie) a few months later we finally got a surgery date, and she took to it really well, we both did and it was nowhere near as daunting as I thought it would be. When we introduced blended diet, I just loved having the control of what she was having and knew that what she was having was fresh. Having to take eating orally away was bad enough, she had a really sweet tooth (like me!) and she loved a chocolate pudding so it was sad to take it all away and the thought of her just having the feeds left me feeling sad and I like it was just the easier option.
4.Is there anything you know now that you wished had known then.
I wish I had started sooner, and Evie was able to get a tube earlier in life. I should have gone with my gut and not kept putting it off. A lot of professionals would tell me it’s a real-life changing decision which in turn made me put it off when actually it was one of the best life changing decisions we made for everyone.
5. Biggest or funniest blended mishap?
Oh, we have the usual, blends up the wall and on the ceiling. My blender likes to almost do a Catherine Wheel effect but sideways and literally sprays it a full 360 degrees around the kitchen which is always fun! 60ml syringes just can’t be used without a small amount flying somewhere! And it’s a bonus if you find where it went straight away! Other than the sprays around the kitchen, the most annoying is when the extension comes off and I feed Evie’s lap/wheelchair! She likes to have a blanket on her lap so usually I find out when we have finished!
6. Favourite blended meal or ingredients?
Why does almost everything turn green!! We blend up what we eat up for Evie which does make life a lot simpler and its fresh. Evie used to love having a roast dinner when she could eat orally so for me a do like to blend up a nice Sunday roast for her. When we started, we did used to add a little more cream, oil or butter to blend to get the calories in but the gradually stopped and she maintains nicely now.
7. Any blended tips or hacks?
Ask families who have done a similar journey for advice. People in the medical field are great don’t get me wrong, but speaking to someone who is living it or has done it will give you such an honest experience of how it is. For us to start with I felt quite alone as blended diet at the time, under our hospital/dietician wasn’t really something they were advising to do, it was frowned upon almost, therefore the support wasn’t there. So, I reach out to families which was the best thing I could have done and massively helped in the early days. Now hospitals are way more on board, some even supplying blended meals during stays.
8. What made you first use Wilbo’s Blends?
When I heard about Wilbo’s it was a magical day! Evie sadly has a lot of hospital admissions and blended food is some what of a nightmare. NOT ANYMORE!! I keep them everywhere for those just in case moments, hospital bags, in the car, even in my handbag as you never know when you might need one if you get stuck. And now with the adaptor it’s a complete game changer. Life is much easier, its so nice to be out and about you may have a spontaneous “lets go out for dinner” moment and you know you are covered as you have a meal already prepared.
9. Who would you invite to your blended dinner party and what’s on the menu?
I mean where do I start!! Who would mummy like there or who would Evie like there! I think it would have to be all of Evie’s amazing and inspirational friends locally and through the magical world of social media! And then there would be a few pops of champagne to cheers how far we have all come I would think!
10. Finally what tips would you give to somebody starting the blended diet journey now.
Take your time, take notes and don’t be afraid to ask questions, even if you think it some very simple. It can be a bit trial and error to start with, but you will get there and find the perfect route for your Tubie to make everyone’s life that bit easier.