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Being Mum Parenting Weekly Update

A challenging start to the year

On returning home from the hospital with our new bundle, eager to show him off to his big sister who had been left for the first time ever overnight without either of us we had hoped for a much more exciting reception than what fate had planned for us. You would think having a complex pregnancy, major surgery, a toddler with limited mobility plus a newborn baby might well be enough to comprehend for one family. You would be wrong!

I walked in to greet everyone, took one look at Ariella and I could tell she was not feeling well at all. She had over the last few months been picking up illness after illness, becoming very withdrawn and screaming much more than ever before. The following two weeks were no fun at all, every night we would wake her up to change her sheets which were soiled, as time went on she became more and more distressed at this time. We took her to the GP thinking she must have a stomach bug or virus, it went on for two and a half weeks before her little legs and feet started to swell. I knew that day something was really wrong as Ariella had become very quiet, very sleepy and was vomiting all her food. She went days without having any wet nappies, she even went into the children ward briefly for suspected dehydration but was discharged quickly. That night I was putting her to bed and noticed how unbelievable skeletal her little frame had become, every rib was visible, she looked anorexic and her legs felt puffy to me. The next day I phoned the doctor surgery and explained things were getting worse rather than better Ariella was given an appointment for later in the afternoon. When I tried to put her shoes on to leave they wouldn’t fit on and I knew something was very off indeed, ditching the shoes we headed out the door three weeks post surgery with both children (one strapped to my chest in a sling and the other too weak to move nestled in the side of my arm). I sat with her in the surgery waiting room feeling like we should be in hospital and very much out of my depth, her breathing was very shallow and fast and she was very floppy. This was not how I imagined the first day flying solo to be, J had gone back to work that same day.

After a throughout exam by a doctor Ariella was sent onto the children ward and didn’t get discharged for seven long days, I was at home with her three-week old brother while her dad stayed by her side. Those seven days felt incredibly extended and during that time Sebastian had changed so much, I wasn’t able to take him into the hospital as he was too small to be on a ward full of very unwell children. The hospital ran a variety of tests from ultrasounds to bloods, tubes to remove air from her stomach as it was incredibility distended. After several attempts to get a cannula in, every single option of a vein had been attempted she was given fluids but we still did not know what was causing her to be so lethargic and swollen. It’s amazing how much time ticks by while you are in hospital, or waiting for tests, waiting for someone to come back with the rest results, waiting to find out if you can go home, waiting for the food trolley. Whereas at home you have a lot of distractions to keep you busy, is no wonder really that patients and their carers become so impatient with such lack of control about their day and frankly future. It feels like having a tiny piece of the path ahead alight for you, but really you want to know where it’s going so you can plan ahead and prepare yourself.

With the results of the tests and a worrying ultrasound showing a bowel issue (that resolved itself but created the need to be transferred up to a London hospital and be prepped for surgery) it was finally agreed that Ariella had “probable” coeliac disease. She started a gluten-free diet in hospital and when she was finally discharged she already seemed much better. It took several weeks for her obsession with food to slowly fade, yet I suppose for several months she would have felt like she was starving it’s no surprise she has become so aware of meal times and snacking. Weeks on her mood is greatly improved, she isn’t screaming at me every few seconds anymore, she’s actually smiling again, her hair although it fell out at first seems to be growing faster, she looks less pale, she’s more able to move around and in general her mobility is progressing again. It’s had a profound impact on us as a family as living with Ariella in her new state is a lot easier, she’s more patient, she’s engaged whereas previously would sit all day in a zombie like state playing with no toys but instead screaming or crying. You might wonder why we didn’t realise sooner, we did but there was always an explanation for the various issues raised. Her stomach was distended, not unreasonable given her weak core. It was only when she began losing weight that I started to feel perhaps Ariella was being misdiagnosed. Even the vomiting with eating and after could be explained by a sensory oral issue or sickness.

We are so grateful that it’s something we can treat and will hopefully enable her to move forward where we’ve been stagnate for a year. I know it won’t be a magic cure for Ariella and that she has struggled long before she ever ate gluten but I hope that it can put her back in the place she was before her second birthday. I hope that it means that she can begin now to live more, be happy and confident and frankly we can go outside more. Once Ariella was diagnosed we decided to become a gluten-free household and I’m very glad we did. When she came home I had hauled all the gluten out of the kitchen and had signed up to CoeliacUK, had gluten-free recipe books on order as per the dieticians advice. There is really great recipe book for children called The Gluten Free Cookbook for Kids which I have now tried quite a few of the recipes from with great success. I suspect I may also have Coeliac Disease as my blood test results came back just the same, so it’s good that we all are living healthier all round. I wanted to make sure that Ariella can pick anything from the kitchen without worry and that it felt inclusive for her. It really hasn’t been too difficult to change our diet as I always cooked recipes from scratch and never really relied on pre-made sauces, the only major change has been that we don’t eat out at often and have less takeaway’s now. Which has been great for my waistline!

Comparison pre and post gluten removal

In the last month and a half while learning we have accidentally given gluten to Ariella twice and the effect are very obvious so I feel quite certain about her CD diagnosis. Right now though I am just pleased that our lives are a little more quiet with a little less screaming, I’ll take that.



Being Mum Lifestyle Parenting

In the quiet

Christmas was pretty busy, I feel that I should have taken more pictures in the moment but perhaps it’s nice sometimes to just appreciate it yourself. Ariella has been very throughly spoilt by all her family and friends this year. We bought Ariella the Duktig IKEA kitchen, she didn’t get to see it Christmas day as it really just would not have been transportable. The pots and pans and cutting vegetables/fruit go perfectly with the kitchen, thanks to her Uncle/Aunt and cousins!

It’s been great to see the expansion of her Happyland set courtesy of her grandparents, she now has a farm and a playground to add to her collection. All her new advent friends can space themselves out a little more, I’m undecided exactly what I will do with those special characters after the festive period ends. Perhaps store them for next year, I doubt we will get another Happyland advent unless they change the theme each year? Perhaps you know a nativity one would be great for the new barn!

Mothercare wooden activity cube

It’s been lovely to spend a few days as a family with Ariella, appreciating all her toys and seeing her interacting with them in a way that until now she really hadn’t been. She has a new bigger wooden activity cube which she really loved, on Christmas morning I think this diverted her attention from unwrapping the rest. Thank you to Uncle James and Deni for this! She has learnt to post things with her ELC post box, which I talked about previously. This wasn’t a Christmas gift, I purchased it a little before in the hope that it would help her with her fine motor skills – seems to be the case. It’s been really good for explaining posting Christmas cards too!

Poor lonely tree – all the presents are unwrapped!

Ariella enjoying a sweet potato, coconut and cardamom soup

I thought I would just share a few bits of what we’ve been doing with our time, this is Ariella enjoying some homemade soup. I love this recipe, it’s from Jamie Oliver “Sweet Potato, Coconut and Cardamom”, I don’t bother with the topping but Ariella loves it and so do we. Give it a go, it doesn’t take too long to do as you mostly leave it cooking which is always handy.

As I mentioned Ariella has only had her kitchen for a few days, I’m glad we went with the taller IKEA kitchen as she is just so tall! I’d like to modify the kitchen, have a look at all these DUKTIG hacks on Pinterest. If/when we get around to it I’ll upload it to the blog, I have a few ideas. It’s currently in its temporary home until the tree is removed and then it will sit in its place. It’s only really when you start pretend play that you realise you are missing some things, I need to get or make a tea towel. Ideally some plates, bowls, I’ve found some lovely wooden ones that I like on Etsy.

TreasureToys – Etsy

Ariella loves the little wooden tea set from Plan Toys, I purchased it on Amazon but have removed the sugar cubes and stirrer for now. When Ariella is suitably not putting things in her mouth I’ll introduce those again. Generally speaking she doesn’t often put things in her mouth anymore but she does occasionally and the cubes are just too tempting. Since getting home Ariella has gone straight to her kitchen and played with everything all day long, I’m so pleased as it will be helping her standing practice too.

Playing with her new kitchen with daddy!

We purchased some self-care Melissa and Doug boards, the latches board and one which teaches buttons, zips, velcro –  Basic skills for self care. She hasn’t been introduced to these yet but I’m really happy with the quality of the boards, I was recommended the latches one and the recommendation seems to be on form. They are bigger than I thought they would be too, luckily we had lots of storage space so I’m going to add these to the rotation of toys. I’ll be clearing off the shelves and changing them quite a bit as I feel rotation is really important.

Melissa and Doug – Self Care board

Melissa and Doug latches board

Mini Micro Scooter 3 in 1

Ariella has a new scooter too, she is still very scared to get on but we hope that in time she will start enjoying the scooter. It will be great for her muscle tone and allow her to get around more freely, just a matter of building up confidence.

Here is a few of our walk today, it was -1 outside and frosty but we had a few things to do and decided to walk for them. A great workout, I achieved my exercise goal on my Apple watch – whoop! Which I then counted with a nice brunch at the Natter Cafe in Farncombe.

On our return the cleaners had come and gone, so we were greeted to a tidy and refreshed home. They had even accepted a delivery for us, a package from some family members in Australia came. We had been keeping an eye out for it and it seems it was clear why it had been held up, Royal mail had opened it to check the contents. But it had arrived and two lovely Winnie the Pooh books for Ariella were wrapped up along with a bunch of beautiful cookie cutters for us. Thanks guys! I can’t wait to bake some cookies with Ariella, particularly loving the kangaroo and the crocodile.