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A challenging start to the year

Posted on 1st April 2018

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 She had over the last few months been picking up illness after illness, becoming very withdrawn and screaming much more than ever before.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.

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Being Mum Lifestyle Parenting Weekly Update

An odd season

Posted on 24th November 2017

Usually we have a lot of fun this season, with Halloween and Firework Night with the best of all Christmas following later. It’s so far not quite worked out like that, Ariella has been really unwell. If she doesn’t have a cold then she has a vomiting bug or fever, an infection.

I think it’s really difficult when children are unwell, they don’t sleep well, they don’t eat well and really don’t want to do much. The days can feel much longer and you might end up watching a lot more television than you originally planned. This is the first time however that the illness has really reacted badly for Ariella, she really struggles with a runny nose because it’s sticky and then hairy once she tries to wipe it away and picks up all the various cat hairs floating around. A few weeks ago we had her assessed for occupational therapy, this highlighted a bunch of areas which we can work on with Ariella. Sensory concerns aside we have great anxiety to overcome which seems to making everyday life much harder than it has ever been before.

When you have a sick and easily anxious child it’s a recipe for disaster, one who doesn’t like sticky things or items on her hands that she cannot removed. Snotty noses turn into days of repetitive wiping away, hairs proceeding to then get stuck to her hands, over and over “help, help, help”. Crying and screaming, biting and aggression – mixed with repetitive phrases that have no context over and over. She uses a bank of maybe four phrases which she will now scream out while trying to bite or throw herself around when frustrated throughout the day. I cannot stop her nose from running, just like I cannot change the rest of the world for her. In these times the whole day can focus on aggression with little structure or sense and you just have to stand firm to it all and hope that tomorrow she might come back.

Illness really takes it out of Ariella, it can take several days before she will be able to stand up and walk or have any energy to lift things. Once she is up and about it’s usually quite wobbly until she can gain her strength again, it definitely makes me appreciate how hard motor can be for her. I’ve seen a lot of activity on the blog and social media lately of visitors checking in, I know it’s been a while since I posted just about Ariella so wanted to make sure I really update with this post.

As Ariella wasn’t well enough to go outside for the fireworks we watched them from our kitchen window seat, she had gone to bed but the fireworks started around 8pm. We woke her up and brought her in to see them, I’m glad we did as she loved watching them. In fact over the coming days she saw lots of fireworks in the sky and even now asks for them when it’s dark out. It didn’t feel completely like a loss, which was great and I’m so pleased that she now understands the concept of them even if she wants to see them every evening!

Ariella seems to fixate on one type of “thing” which at the moment is fireworks, we watch fireworks a lot on YouTube using our television. She particularly likes the London fireworks, so we’ve watched several different years of these – I won’t keep up for New Year but she can watch them the next day this year.

The last week or so Ariella has been recovering a little, she’s taking more steps indoor again unaided and has managed to stand herself up. But it’s a long, slow process and makes you really want to avoid sickness at all cost. For her illness costs her time, which doesn’t seem that important right now as a child but having worked for months to get to this point and have it wiped off in a few days – it’s just tragic! Physio have suggested that we go back to using her wrap again during these periods and certainly no chance of weaning off her supportive shoes any time soon.

The last few trips outside have brought with them some pleasant progress, although Ariella doesn’t like to walk outside or touch the ground she is much happier in the pram than previously. No more screaming when I stop, telling her exactly where we are going and breaking it down for her seems to help. It’s not always perfect, I wouldn’t expect it to be with a toddler but it’s getting more manageable. Now if we can just build up her strength and with it confidence then hopefully she will start walking outside too.

Checking out the animals in our local pets at home store

We took Ariella to our favourite spa hotel Calcot Manor in the Cotswolds to celebrate the pending arrival of number two with friends. She coped remarkably well, during that week she had started eating different things at home (rather than cereal every morning it’s now crumpets) and at nursery has begun trying new foods. We also saw improvements in her overall diet while eating with her over the weekend at the Manor, she tried some of the deserts and has branched away a little from beige coloured foods which are “safe”. It was a really rejuvenating weekend for us, we stayed for two nights and had a babysitter booked for both evenings, they usually use staff from the crèche for this. Ariella attended their crèche during the day for a few sessions which she really enjoyed too, playing lots with their musical instruments. I wasn’t sure how she would cope with the environment but she seems to remember previous trips which I think helps. Appropriate childcare really is the only way to full relax as parents, giving us time to attend massage appointments at the spa. My second massage while pregnant, first one of this pregnancy though – very much welcome! We also had some time in the spa to just relax, I do wish I could have taken a dip in their outdoor hot tub but next time.

Finally a decent mocktail! Thanks Calcot Team

The last couple of longer trips with Ariella in the car have resulted in her throwing up several times, usually when we get to roundabouts or twisty roads. Driving into the depths of Wales back in the Summer was particularly gruesome, it’s quite hard to clean up several projectile vomits while on route. We even managed to use every outfit we had packed on one occasion, amongst a huge amount of water wipes and the seat has been washed more times than I can count. In light of this we decided it was time to turn her, weighing up the pros and cons of the extra safety extended rear-facing car seats provide I feel comfortable with the choice. For now at least it has meant zero vomit during the most recent trip and Ariella seems a lot happier in this position as she has more control over viewing what’s happening, so we have less screaming to contend with. It didn’t take Ariella too long to get used to the impact cushion, it’s quite unusual as you hide the straps away under the fabric of the seat and then the cushion holds the child in place. Much quicker from my point of view and Ariella is now used to lifting her arms up ready for the cushion to go down.

Ariella in her Cybex Sirona carseat

Just what every child needs at Christmas when arriving, a cookie. I hope they never stop this tradition!

We have some amazing friends, a fabulous baby shower afternoon tea.

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Being Mum Lifestyle

A little update – Walking, looking to Autumn and where is the time going?

Posted on 30th August 2017

If you follow the Unruffledmum on Instagram you’ll have noticed a few shots of Ariella walking as of late. It’s been a really difficult journey to watch as her parent, she started walking holding on hand on the 28th of March and then in June she amazed us by walking from room to room all by herself for several days. The day I announced this great achievement on my personal Facebook she stopped and she stopped completely, refusing to walk the smallest of steps between two people and certainly not by herself to a location in the room.

The lag coincided with some of my sickest weeks with my current pregnancy and It definitely seemed rather daunting that I may end up with two children come January who cannot walk, not ideal at all given we have eighteen steps from our door down to ground level. But you come up with ways of coping and certainly I began to rethink how to cope in that scenario.

After about eight weeks of not a huge amount of progression gross motor wise we realised she wanted us to sit down, she would only walk between us if both of us were sat and if one of us tried to stand up while she walked between us she would immediately stop walking and fall to the ground. So we did this every evening, with Ariella pacing the hallway back and forth – slowly Jamie would shuffle backwards (while still sat!) further and further and bit by bit Ariella gained confidence. Ariella really finds the outside scary, she cries if she has to walk on or touch grass. We would take her to the park and sit down further and further way from each other making her walk the long stretches between us. Eventually we moved to disappearing still sat down behind rooms, over time walking clicked in and sometime in August just before we headed off to Barcelona she could walk.

At present she walks from one point to another, she can stop midway and stand for a few seconds, she often prefers to walk and her walking over time is becoming less awkward looking and more fluid. She has learnt to turn herself while walking, turn herself while standing to – set off – by herself rather than needing to hold our hands first. Sometimes I catch her walking in the corner of my eye and I’m still surprised, it hasn’t quite sunk in yet – we’ve watched every single piece of her development down to the smallest detail piece itself together. I think that’s one of the best things about developmental delay, you don’t miss a thing.

Although the last two months have been a bit regressive in terms of gross motor she has progressed so much in other areas of her development. Pretend play has exploded, I often now see her playing with her dolls, talking to them and putting them to sleep. Making pretend food in her kitchen, making soup, cutting vegetables, drinking from her tea set with dainty fingers. Her happy land set has seen a renewed spike of activity, with Susie and Savannah showing their faces once more – we even purchased a red bus for her as her reward for staying in bed until the sun came up using her Groclock. It’s so much easier to live with her at the moment when she is showing an interest in her toys rather than just throwing them around, I’m sure it’s less frustrating for both of us.

Ariella has a fantastic memory, it’s definitely her thing. She remembers numbers, counting, the alphabet, object flash cards very quickly and it’s lovely to see these things spreading out across her play. Social development too has just blossomed, she loved spending time with all the adults around her in Barcelona – taking home many of the funny things they shared. She is still shaking items in her hands left and right now and often talks of each of our friends in turn.

In short its been a really uplifting month a brilliant end to Summer 17′, I’ve been feeling better and Ariella has been making huge leaps in progress developmentally. She’s lovely nursery, she is really changing from a baby to a little girl and her development is either catching up or progress which is all we can really ask for! I’m so looking forward to Autumn, my next goal is to crack her anxiety and aggression. Some of the routines and anxiety behaviour is really limiting her outside play, I’m hoping that her occupational therapy assessment next month might help us understand which area to focus on to help. For now however we continue to just compared sizes of bites between us and hope that eventually this too will change.

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Being Mum Lifestyle Parenting

One of those days

Posted on 9th January 2017

Today has been one of those tragic days in which you really wonder if someone is coordinating your fate from a high. The day started with a fever, mine. I knew I wasn’t feeling well when I was shivering in bed wondering what on earth could have caused the room to turn to frost in the night. Ariella woke and starting calling “up” on the monitor, I said “Maybe she is cold”. Mistakenly assuming that everyone was shivering like me. I asked Jamie to get me the thermometer so I could check my temperature, I never have one. I’m a steady 36.5 c, always!

It beeped red at me, it’s was too early to see that kind of number on a screen. Jamie was going back to work today so I didn’t have time to be unwell. I got up, which was a bad idea – I immediately started shivering and went to get a throw from the basket wrapping myself up sitting at the dining table while Ariella ate her breakfast. Today was important too, I had another thyroid scan today to attend. I haven’t spoken about it on here I don’t believe. Anyway I had a scan six months ago as my thyroid was sore today was my second scan to check the nodules they found haven’t grown. One of them had grown, boo! Biopsy planned now, but hopefully nothing sinister as I frankly don’t have time for it anymore.

On to Ariella, on Sunday we noticed she was walking strangely. Normally she does have a bit of a tilt to her ankles but both feet tend to be quite straight toes facing forward. Sunday we noticed she was dragging one leg and foot sideways so that the toe was facing outwards. Out toeing I think, but also with the dramatic change over night we were concerned. I emailed her physiotherapist but thought best to take her to the doctor too. I wanted to rule out any acute injury that was unrelated to her conditions, although she didn’t seem in any pain at all and there was no swelling. Still it’s a worry to see and she won’t walk on it far, I hope it doesn’t hinder her progress as she was making such great steps.

The doctor seemed bemused, luckily as we have a direct contact with Ariella’s physiotherapist I was told to contact them to make an urgent appointment which I will do tomorrow. But else we will have to go to the hospitals pediatrics department, not a stress we need!

That concludes our day, time to adjust the sail.

Being Mum

New look, new update

Posted on 1st November 2016

Well hello there, it’s been a long while the last post I published was when Ariella was 12 months old and my how she has changed. Ariella is now eighteen months old, but before I start I want to explain the big transition to this new blog and the disappearing act from myself. I would absolutely love to tell you that I’ve just been so busy with a tiny adult to entertain that how could I possibly have had time to blog at all. That’s really not the case, If I wanted to I’m sure like many mothers I could have found the time to publish some of the posts that I’ve been drafting.

The truth is that I really haven’t had the will to want to post anything for six months, various reasons which I’m sure over time will reveal themselves. We’ve been up to our usual antics, crafting, soft play, trips outside in the beautiful summer weather that we’ve had this year in England. We have had lots of fun but there has been a little, tiny cloud hanging over us for some time now. It doesn’t block out the sun don’t get me wrong, but it kept showing up every time I came to write.

So what cloud? Well Ariella has a level of developmental delay, she has been under review since she was three months old when she had an ultrasound on her fontanelle (the soft spot at the front) there were some concerns after this scan about the fluid around her brain (hydrocephalus) as well as the corpus callosum and we continue to live with the unknown diagnosis for now. As you say, hoping for the best but always preparing yourself for the worst that’s certainly how I like to be. While other parents have been enjoying lots of fast progress the last six months, our jumps have been a little slower – slowly but surely! I’ve spent a lot of time ferrying Ariella to and from appointments, physiotherapy, reviews, neurology, head measurements over the last fifteen months but the majority of our days are full of fun.

Ariella continues to progress and is expecting an MRI shortly which should hopefully either dismiss or clear up some concerns (and give us a diagnosis). Until then, I hope you enjoy reading some of my future posts!