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Thirty

How do you celebrate the fact that you’ve existed for thirty laps around the Sun? Take all your friends to a remote location in Wales with their children seemed like the appropriate answer. Best to lure them with the smell of Champagne as a thank you arrival drink for making it off the beaten track late on a Friday evening post work.  It’s lovely being a parent, most of the time but it’s even better when you can enjoy parenting while still celebrating with friends. That was what I was attempting to achieve and I think mostly it worked out well.

The majority of my friends now have their own children and when deciding on a plan for my 30th birthday celebrations I wanted to incorporate family as much as possible. Child friendly but still fun and luxurious was the vibe I was going for and I hope I hit the mark with it. In a surprise turn out both my children were well and healthy as we set off on our way to Wales, stopping over at my parents house to break up the journey. Stored in the back somewhere was my tower of Champagne glasses, a bag full of frozen canapés, two bags full of stuff for two children with our things crammed wherever they will fit, a double pram. This was pretty light packing, Sebastian was thankfully using his carrycot still and would be sleeping in that – I’ll be writing about the Bugaboo Donkey2 shortly it’s really impressed me. Ariella was going to be transitioning into a single bed with blow up Hippychick Dream Tubes, although she did fall out of bed once they worked very well for her and didn’t take up much space at all in the car.

The house we had rented for the weekend was screaming Hygge inside and out, from its several log burners, candle lit lanterns, books scattered around to its outside pizza oven, star-gazing wooden hot tub and it’s tree swings. On arriving I quickly assigned rooms before everyone else arrived and set to getting the buffet table sorted. Once both children were fed and asleep I could really appreciate the beauty of rural Wales up in the Brecon Beacons, the only sound to be heard was of sheep just outside. I really recommend visiting if you haven’t before, it’s absolutely wonderful. We were very lucky with the weather, the entire duration of the long weekend the Sun was shining on us and the clouds very clear which made for excellent star-gazing at night.

Half of the group the next day went gliding, which I’m told was fabulous and the other half turned part of the old cottage into a spa with our own personalised therapist. The weekend was full of good food, nice drinks and lovely cocktails – topped off by a private chef cooking a three course dinner the final evening.

I want to talk about a change in mentality since turning thirty. Three weeks have passed since my birthday weekend and I’ve pondered on many things, how could I have used up thirty years already for one. But also reflecting on where I am now, parenting and the everyday stresses that surround it alongside the additional stresses of the last few months, of coeliac disease, global developmental delay and epilepsy. The screaming has returned a little the last couple of weeks and on top of this Ariella is going through the typical twos, she wants to be doing one thing but time demands we do another. The social communication delay makes it at times difficult for both of us to understand each other. It occurred to me last week while becoming frustrated with the constant screaming (we have building work going on at the moment which means lots of noises) that I’m fortunate to not have somewhere crucial to be on a day-to-day basis yet; I’m always trying to rush Ariella along, getting ready to go out the house, getting down the garden steps to the car, in the car, to the final destination once we’ve driven. I was sat in the nursery car park watching all the parents in the morning drop off their children, rushing to get to work when it dawned on me that I don’t need to rush and what would actually happen if we just slowed down to Ariella’s pace.

There are few things that are critical, hospital appointments yet but everything else is just a nicety. If Ariella doesn’t mobilise herself because she’s focusing on something else, or stops in the middle of the path to look at a stick then it’s less stressful for all of us if I just let her get on with it. She is lucky that we can do that, why not take advantage of it. When you are being screamed at daily, for long durations is easy to lose sight of the light at the end of the tunnel but the bigger picture is there. We have two beautiful children, a wonderful home, two fluffy cats (even if one of them does like to have a wee on a tea towel) and time. We have all the time in the world, I appreciated the time my own mother gave to me as a child, forgoing work to stay at home. A true luxury these days to be able to do so, to be able to take Ariella to all her therapy sessions, her hospital appointments and ultimately watch her and her brother grow.

I also have decided that from now on I am going to invest into others what is invested in me, embrace shorter hair and try to appreciate every single day without worrying about what is around the corner.

Being Mum Lifestyle Parenting

Epilepsy and you

I think most people when they think of Epilepsy visualise a physical jerking “fit” like in films however what I’ve come to realise the last few months is just how subtle epilepsy can be. It isn’t just the large tonic clonic seizures where they shake and convulse but also absences which can look merely like a day dream or quick jerks while sleeping.Uncontrolled epilepsy has been much more unsettling that I realised it would be, we used to take for granted that once putting Ariella to bed she would be safe and well mostly.

Twice now I’ve come to collect Ariella on a nursery day only to have a blank stare back at me. It’s baffling to see your own child who should know your face stare at you like you are a stranger, it makes you wonder what has happened and whether it’s temporary. The first time it happened was April the 26th, I walked into her nursery room and she didn’t notice me, this in itself rather unusual as previously she would want to go home as soon as she saw me. Her sort of keyworker  (someone who covers her main key worker when she’s not in) said “let’s find mummy!” she replied, “Mummy!”. I’m told she looked in my direction but I’m not sure she did.

She walked over to a table without looking at me and started playing with toys in the room. How unusual I thought, I bent down and said “Ariella, it’s time to go home”. She looked straight at me and there was no sign that she knew my face, no smile, a quick glance then her usual hiding -not looking at you- tactics.

I immediately felt something was wrong, what had happened to her? The staff noticed how strange the interaction was too, so the nursery staff encouraged Ariella by saying “who is it Ariella?”. She didn’t know, the look on her face said that very clearly. She wandered off and went to go play more. Eventually I persuaded her to leave with me, she kept looking back towards the door of her room as if she wasn’t sure about where she was going. Starting to worry quite a bit about her memory now I asked her “Where is our car?”, she didn’t know – again very odd. It was only over the course of several hours that evening that she started to become more herself again. She immediately knew Daddy though, it was the strangest thing and worried me more than anything to this date.

The second time it occurred was the 31st of May, by this point we had seen Ariella’s paediatrician and she had been diagnosed with Epilepsy, it was starting to make sense. I’d sent her a video of Ariella’s hands tremoring but unbeknown to me at the time I had actually also caught an absent seizure on camera. I did notice before the appointment when I watched it back myself, they are so easy to miss in person. I wonder now how long the seizures have been going on for, a lot of the activity for Ariella is always at night. In fact most of her ferible fever induced seizures are often when she is unwell and always between 2 – 4am. We’ve always had an eye on her but I remember when she was under a year old and I thought she was having infantile spasms which are where both limbs shoot up a little like a startle reflex but more like a jack-knife. I was sure I saw this happening, when she was assessed in hospital her EEG was normal and she didn’t do it in hospital. Was that the start?

I know the very first sign that something wasn’t quite right was around 18 months old, her hands would often shake a little. Just a tiny amount, I raised it with her physiotherapist but there was no way of knowing if it was the start of a tremor or just her weaker than normal core strength. After the months went on a pattern began to emerge, the shaking was always worse when she was unwell. Her seizures are always worse when she is unwell too, I think that can be a trigger for some epileptic people? Her ferible convulsions may well never have been ferible and instead were epileptic triggered by fever which would explain the extended duration.

So with each episode of illness the shaking hands would return, it was only the end of last year that the hands moved to the arms and that we started to notice the shaking more often.  When she was diagnosed with coeliac disease the shaking all but cleared again. We hoped that was the end of it really that it was due to how poorly she was but it returned and now it makes more sense. Something that is relatively new is the absences, either I didn’t notice them before because I wasn’t aware of what to look for or they have increased. Before medication the absences were occurring daily with little pattern, worse during periods of stress and anxiety for her. It’s still very early days in terms of medication and I think it can be quite a trial to find the right match and dosage, but for now it seems to be helping her a lot. We should be seeing an epilepsy nurse soon which will give us some emergency medication we can administer should she have a prolonged seizure again, I had no idea that brain damage can occur and we’ve always been assured that she was before now having just ferible convulsions but long versions of this. For Ariella a long seizure can be mean she is unable to walk the next day and doesn’t regain her mobility in full for a week, or her face droops on one side, or goodness knows what else can occur that I don’t know about yet. I will sleep much better once we have this medicine to hand.

The last week Ariella has been much less anxious, the medication she is using is used to treat bipolar disorder and anxiety too. The downside to this is she is very hyper and wired, she doesn’t sit and concentrate for long periods at present but until the dosage is at its final level it’s hard to know what the end result will be. She has had her second EEG, which is when they put little electrodes on your head and check for activity – it will be a little while before we know the results of this and in the near future she will need another MRI. But for now she’s happy, she’s hyper, full of energy and far less anxious than before. For the very first time in a very long time we listened to the radio in the car on the way to nursery this morning, much as I love our Ariella approved playlist it’s rather a short selection and I’m pleased to be branching out away from Paramore for a little while.

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Being Mum Lifestyle Parenting Weekly Update

For fox sake, a very accurate mug

I really did think that given what occurred in January for us we all deserved a bit of a break, either I jinxed us with thoughts of easier sailing or someone really is having a laugh trying to work out what more can crop up to challenge us all. I’ll just throw it right out there, Ariella was admitted again for a bacterial infection in her blood. But it isn’t even as simple as that because the weeks leading up to this were filled with endless worry about her constant cold and the general congested and fast breathing she was making at night. I just had a feeling, call it mothers intuition that something still wasn’t right and I noticed while she was on antibiotics for an infection that made her face swell she seemed to make a lot of gains but the congestion returned after the course ran out.

Looking rather swollen

Ariella had a really bad congested nose which just stuck around pretty much after her prolonged non fever induced seizure in March. Oh wait you don’t know about that either do you? Let me rewind, yes so March – massive prolonged seizure, ambulance called forty minutes before she even started to snap out of it. It was pretty horrendous to watch, pretty terrifying too that the ambulance was given the wrong address, it felt like a long time alone and it was – but off she went to hospital and was only admitted for a couple of days, after it was seen that her bowel issue had reappeared but subsequently resolved itself again. That was March then we had May, oh May. May was the almost week-long admission, well in fact four days prior to that in and out of A&E with a suspected virus, followed by a non blanching rash, fever, pale and floppy Ariella, IV antibiotics and the icing on the cake a lumbar puncture.

Fortunately Ariella did not have meningitis, so the bacteria in her blood would be solved with a shorter course of IV antibiotics. It was a really anxious wait for the results although we knew that she was already on the treatment course, they’d started the antibiotics early on which meant it was caught early. This was really great news as I had my 30th birthday weekend planned and we didn’t want to be tethered to a hospital to top up each day and of course meningitis would be much harder to eradicate. When the blood went off to be tested we were told that it was likely to come back purely contamination and Ariella was sent home on home leave while we waited for the results, I felt really uneasy about this as I did not think she was at all well but her consultant wanted to see if she perked up outside of the hospital environment. When we arrived back for the results expecting to be discharged we were told it was actually a serious infection and that she would need the lumbar puncture to check if it had crossed over to her spinal fluid.

During this period of illness Ariella had two ferible convulsions, one in the waiting room of our GP. It was jarring to see the entire seizure from start to end, Ariella was cuddled into her dads arms while we waited to be seen. Suddenly her back arched and her face had a look of pain, it’s an expression I’ve never seen ever on her face before. She kicked her arms and legs out a few times as if she was striding in mid-air. Jamie laid her down in the recovery position while she seized on the floor. Although the first tonic part of the seizure is unusual and strange the clonic section is for me worse.

Her eyes fixated forward and open, her body floppy and her breathing laboured and loud. If ever I need to see an example of sucking in the chest, it always provides me one. This went on for about fifteen minutes, which feels like forever when you can see them in respiratory distress, pale and blue from the lack of oxygen. Some time later her eyes began to move, she falls unconscious. I think this lasted for some time too but by this point the doctor that came to help had called an ambulance. The GP nurse had cordoned a section of the waiting room off using big room dividers, I have no idea how or when these were erected around us. I’d given Sebastian off to a kind member of the public who had lost a blouse to the cause with his milky vomit.

“You are both so calm, so calm” the nurse kept saying over and over. I do remember thinking well we must be surrounded by doctors right now, it’s not like I’m sat with her on the floor of her room waiting for an ambulance to find our rather hidden address. Certainly distance to nearest hospital and ease of ambulance access will be on my next check list, we are at least close to a hospital. The crew arrived and assessed, It was decided given her general paleness, lack of really coming around quickly and her blueness that she needed to go to A&E. She absolutely did of course but was sent home with “viral illness” listed as the cause. The third visit to A&E was due to a facial droop, they wanted to rule out a stroke when I called 111. It turned out that the droop was probably a result of a seizure.

I think during this time you were all enjoying a nice heat wave bank holiday weekend, I dread bank holiday weekends because they mean one thing with the NHS – skeleton staff and lack of access. Every bank holiday weekend we end up in A&E lately. I hope that changes eventually and we can enjoy some time off. I spent almost a week travelling back and forth to hospital in the high heat with Sebastian sleeping on the hospital floor in his bassinet. Credit to Sebastian he was an absolute star, he slept well and didn’t seem phased by the odd routine.

I’d like to think that’s us done for this year when it comes to hospital stays, but I think I might create a quick grab bag just in case.

Being Mum Featured Lifestyle Parenting Reviews

The Bugaboo Donkey2 – Duo

When it was clear that Ariella was not going to be able to hold on to a sibling board I began my search into the world of double prams/strollers/buggies. I struggled at first to decide which pram would suit our needs best and switched between all sorts of makes and models. To settle the matter I made a rather large comparison list, comparing the essential features for us. Firstly seat weight limit,  then seat height, overall weight of the pram, width, cost, fold and finally features (particularly parent facing options).

 

Some of the runners up were the Mountain buggy duet was a close runner up alongside the Baby Jogger City Mini double. However when looking at the prams in person I was won over by the unique ability to make the pram smaller that the mono version of the Donkey2 provides. Ariella will be increasing her nursery or preschool hours soon and there will be more days where I will want to take just Sebastian out without her. The Bugaboo Donkey although it was not the top contender for seat weight or the highest seat limit it seemed to be a good compromise all round for both children. Offering comfort for both rather than the newborn receiving a worse deal in terms of either a narrow carrycot or non parent facing position.

Sibling love – Bugaboo Donkey2

S riding in Mono mode

When the Bugaboo Donkey2 Duo arrived I had to compile it, it came in a multitude of boxes due to the custom fabric options. I chose the Grey Melange premium fabric option for everything because I really love grey, but there are so many to pick from and combinations. I found it pretty easy to put together however and soon enough the pram was up in my front room, which is when I realised I’d want to take it outside. Luckily for me folding it down is a breeze and carrying it was fine, I don’t know if that’s because I’ve been conditioned to carry heavy weights – carrying A for so long!

First thing I did was try and put all the pieces down into the boot, with one piece setup with the carrycot fabrics and the other the seat fabric it fit really well into our Range Rover. If you happen to have a smaller boot I would recommend you go visit a store that stocks the Bugaboo Donkey2 to clarify it does indeed fit. With the carrycot now in seat form both seats stack on top of each other where the carrycot is in the photo below.

Fits nicely into the boot..

I have been delighted to own the Bugaboo Donkey2, it pushes with ease even though it has a heavy load most of the time. With two children and the lower storage area full you would not notice unless perhaps pushing up an incline in which case it makes this easier than our previous option. The carrycot has ample room for a newborn, at three and a half months old Sebastian still had plenty of space to grow into the carrycot. Although this should be the case, guidelines recommend up to six months most carrycots are our grown long before this time. 

I feel this is due to the fact that Bugaboo use the same frame for the carrycot as the seat, changing out just the fabrics so you get a really long frame and thus a nice long carrycot. Space isn’t compromised however you do need the boot space to store such a carrycot (there is the option to remove a few pieces to compress but that seems impractical using the pram day to day). The fabrics entirely are of beautiful quality and materials, it feels very well durable and I love that I can completely remove them to wash at home.

The versatility is perfect, when in duo mode it fits through every door I’ve ever tried. When in mono mode it feels like just a little wider than “normal” but is not restrictive at all and the extra shopping bag space makes for a great option. It is a donkey though, certainly looks a beast next to the baby zen yo-yo we have for when we want to travel light, but we also have taken the Bugaboo Donkey2 with us many times across the UK to visit family just fine.

While travelling with the carrycot we used this as a cot and that made our load even lighter. Bugaboo carrycots are really spacious and the basic mattress is comfortable enough to sleep on if you don’t want to buy an independent mattress option. Rather than buying a fitted sheet I made use of the huge Aden and Anais muslins we were gifted as a base sheet which worked just as well. I was really impressed that the carrycot frame turns into the seat with a quick change of fabrics, most of my friend’s children had long out grown their carrycot before we did. I really do feel given the price of the carrycots normally this made the cost much easier to accept!

Now the Bugaboo Donkey2 is fabulous as S parent faces (please excuse the grub he is enjoying a lovely snack) and Ariella faces the world which is familiar to her. But they can look at each other and often will touch hands or amuse each other, any parent of two children will know how much that interaction between siblings breaks your heart to watch. As S has become more interested in the world I can choose between facing out or facing me, not normally an option for most double’s. Everything is really easy to adjust with their white button system.

Ice cream?

Bugaboo have added a few extra things with the latest version, new fabric options firstly. The side shopping basket used in Mono mode now comes with a fabric cover and can hold a heavier weight, very handy when it rains as it protects your shopping well. The wheels are now foam so no longer do you have to worry about pumping up air, I think that might have put me off a bit – as well as this the suspension has been upgraded. No complaints here on that one!

If you aren’t sure about it you can always buy the Mono and should you want to extend to a second child buy the expansion of the extra seat. I really love this option as it allows the Bugaboo Donkey to grow with your family. You could even extend it to include a third child by adding on a sibling board/seat later. The versatility of the stroller I felt really pushed it to the next level and when you consider the price being able to keep the stroller as your family grows becomes quite cost effective.

Graduated to the seat fabric
Ariella with her snack tray accessory, such a great idea

Now to the main negatives:

  • The size – I think the obvious issue is it’s a big pram there is no disguising that fact but I’d also say any double is really. I had real genuine worry about getting around with a double pram day to day, living in a small market town with little paths but I have had no issue with this at all. The other main downside is the larger fold, you do need to go check out your boot space, Mamas and Papas usually have the pram in stock so you can go trial that out (do ring ahead to check!).
  • Rain covers –  I don’t really like the rain covers that much, they are quite annoying and fiddly – I preferred the Stokke Xplory rain cover which just was on elastic where as the Bugaboo covers have a velcro in the middle you join together. You are supposed to be able to fold them down into the neat little package they come in using the velcro but i’ve yet to figure out how to achieve this unless it’s a really hot day and the plastic is much more pliable.
  • Cost – It’s really very expensive, when you take the base unit plus the accessories but if it’s within budget it’s well worth the plunge in my view, plus if you buy it with your first child and use it as a single with the option to expand later it seems very cost effective. The quality of the pram and the accessories is really good, I think there is quite a reasonable market for resale later too.

With all of the above said I really can’t fault the Bugaboo Donkey2 much at all. It’s great they have done a fabulous job with it and I love ours! 

For your amusement, don’t always take the way a shop puts the boot space test run in your boot at the best method. Only those well established at Tetris are qualified to work out how to put a Donkey in a boot.

*All of my reviews are my own personal opinions and I have no affiliation with any other the brands mentioned above.

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.

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Being Mum Lifestyle Parenting Weekly Update

An odd season

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 Featured Parenting

“Muddle” Puddles – Another update

Autumn-leaves

Like clockwork the meteorological calendar ticks over to Autumn and the rain comes, we have our first sight of leaves falling from the trees today. Plenty of muddy puddles to jump in for all the children, something I’ve been waiting for a while. I thought that it would just be bound by Ariella’s ability to A. stand B. jump but it turns out C. anxiety has reared its head. Yet here it is and I’m so glad Summer is over with now, pregnancy and heat are just not for me. In fact much as it may surprise you I don’t really like direct sunlight all that much, I still enjoy going on holiday but prefer to spend my time in shaded spots – preferably with a lovely cold drink and a good book. I know some of my friends were amazed when I said that since we do favour hot locations, I’d happily go somewhere snowing if I could convince anyone to come with me!

The last few weeks have been full of tears, tantrums, crying and of course children of her age do these things – I hear that a lot. They do, but before you take that thought path let me direct you down this road because I think the behavioural aspects of special needs children is really overlooked. Check out this brilliantly written article by a physiologist part one which lists the cons and part two which lists the pros. It’s odd to see so many of my thoughts written down as I’d never really considered that other people often feel this way too, the feedback reward loop is something that I’ve always found a challenge.

With SN children, however, they often require that you teach—and reteach and reteach—some of the same lessons until the children learn. What happens when the student doesn’t learn? The parent understandably feels frustrated. Parents need positive reinforcement to keep chugging along, but they don’t get the reinforcement they need if the child doesn’t learn the lessons. In this way, the parent’s experience leads to a sort of crisis of faith: Are my efforts making a difference? If not, where do I go from here? – Psychology Today

The hope is that Occupational therapy will aid with some methods and techniques to counter the anxiety and sensory aversions that Ariella seems to be showing. It was rather disappointing when our private assessment had to be cancelled by the therapist, I’m now undecided about whether to continue my search for a new therapist while we wait out the very long (so I’m told) wait list for NHS O/T or just hope that things settle down a little in the meanwhile. I am trying to find out how long the current wait is but it’s proving elusive, hopefully with this knowledge in hand I can make an informed choice for Ariella.

Since starting nursery a fear and dislike of other children has settled in, I’m not sure why this has happened and I’m not really sure what to do about it. There seems to be a proximity around her in which if a child comes near she will meltdown and hit out – I can only think that she did have a collision with another child while walking at nursery a few weeks back. It was only a matter of time, but I hope in time this might ease a little, taking her outside where inevitably there is grass, sand, rain, noises, other children is proving more and more difficult. Usually resulting in biting, hitting and screaming until removed from the situation. Challenging indeed!

We’ve not seen Ariella’s physiotherapist all Summer as there has been a change over of staff but her next appointment is next week and luckily she has been assigned a therapist who she has met before through hydrotherapy. I’m sure she will be pleased with her progress, when her therapist left her she was just starting to walk unaided a little but regressed. Now Ariella is walking well indoors, as of this week she has started to stand up from the ground rather than needing support. She is still a little wobbly and often unsure but her confidence is growing, we just need to work on this outside too! Generally speaking I feel happy to watch her toddle around and no longer feel I need to prepare her for falling like in the early days when she would fall over or lose balance. Next I’m hoping to focus on going up and down stairs, climbing – all tasks which will really help me out with another baby on the way.

Update – Today she asked for the steps and she climbed up with a little encouragement by herself! Taking her lead I offered her the chance to climb the bigger stairs from our entrance door up and she did those all by herself. I’m so pleased for her! So lovely to see all her limbs moving together and building her strength.

Ariella has a new pair of orthopaedic shoes on order, they are a size bigger than her current boots and will have supports which remove in a dashing shade of pink. The plan is to use the supports in regular shoes too and slowly wean her off the support, music to my ears. Her feet are still very bent over but apparently this doesn’t matter so much, it’s about how much balance she has and stability.

Music class is back on the weekly schedule, the break has made her clam up a little in class but Ariella adore music. She loves shaking her maracas left, right, up high and tapping. She’s come such a long way in terms of using her instruments, often copying what the class teacher is doing when it suits. We’ve had many renditions of Twinkle, twinkle and Happy Birthday (ever since her nieces birthday party a few weekends ago). Often she will be humming or singing the words while playing with her toys, doing a little dance. Here is a little clip the original is several minutes long, I wish I had captured it in landscape but never mind!

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Being Mum Lifestyle

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

lakeside

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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Lifestyle Parenting Weekly Update

Bristol Zoo, First steps and Genetics

“You need to spend time crawling alone through shadows to truly appreciate what it is to stand in the sun.”  – Shaun Hick

Our days are filled of typical things, trips to the Zoo, the aquarium, walks, parks, arts and crafts but every now and then those weeks are marked by appointments. Last week was marked by our geneticist appointment, which it seems in hindsight I was greatly unprepared for. In my defence the letter inviting us to their department at the hospital was lacking in details, it discussed maybe taking some bloods, maybe a family tree all things which I felt I could answer to a reasonable standard.

The appointment was on a Friday and the days following up to it had been pretty amazing, Ariella had taken her first independent steps on camera (you can check that out on my instagram). We had spent the week taking lots of walks and saw the bluebells that had sprung near one of our local Arboretums. Ariella was doing really well with her fine motor again and engaging lots in her portage/physiotherapy sessions. The weather here in England had perked up a little and things generally were on target, we even did some water play indoors, took long walks and ate lots of ice cream.

Water play, Ariella still really enjoys water. We are trying to encourage sensory play.

The quickest picture ever, the only one in which she isn’t crying.

I was really looking forward to our weekend ahead too, we planned to take Ariella to Bristol Zoo as we were returning to visit my parents. The whole weekend was packed full of activities with the zoo, meeting friends for lunch, toddler free dinner later in the evening with friends too. Fun packed and I couldn’t wait for Friday to come.

Come it did, it felt like a weekend as Jamie had arranged to take the day off work so we could all go together. We didn’t know whether they would need both of us and given the topic would be genetics then it seems appropriate. You might remember that Ariella has already been tested for the basic array genetic testing. The best way to describe this is in the way that the geneticist did for us, say for example to imagine you are looking at a library. Sections of DNA that build a protein are called genes and imagine one gene is a book with instructions within it. Genes are then further organised into long strings which we call chromosomes, if we are saying a gene is a book then the chromosomes would be the shelves which the books sit on. A library of shelves (chromosomes) with books (genes) lined up in somewhat order. Ariella’s basic array checked to make sure she roughly has the right number of books on the right shelves. Her paediatrician however wanted us to speak with the genetics department to see whether further testing would be useful.

During the appointment we started at the beginning listing everything from pregnancy to date and she was checked over. Her MRI was discussed and it was agreed that it definitely needed to be reviewed from a genetic point of view, luckily we had a photo to hand and I explained my thoughts on the MRI not expecting them to agree. However there was agreement about hypoplasia of the corpus callosum which I’ve been waiting so long for someone to say officially. I can’t stress how important it is to really learn in-depth about your child and their suspected conditions, at one point I was even asked if I had studied medicine (no but I have spent two years researching this!). At the end of the appointment the geneticist looked at me and asked me what I thought, which caught me off guard. I really hadn’t considered genetics beyond the first array Ariella had, I had focused so much on the MRI that I’d not spent much time at all researching anything else nor had I considered that there might be any suggestion of anything further.

The conclusion was that Ariella shows some attributes which suggest her developmental delays are the result of a genetic condition, further testing required. I wasn’t expecting that at all, I asked what the attributes were and although they don’t normally tell you because it’s hard to hear I listened and insisted on hearing it. They are very sure that they are right and in one way it lifts things slightly off me because I’ve been assured that nothing I could have done (including my thyroid) could ever have changed the outcome but still we are left with some pretty worrying conditions to ponder, including some life limiting being tested for I can only hope for the very best outcome, it was definitely a shock to hear that there can be such certainty at this stage even before the tests. My first reaction was that it doesn’t matter what is found, but it will give her more information and I believe she deserves to have that information.

You might wonder why I’m sharing this with you, I’m sharing it to help you understand and if someone who is going through or is waiting for testing can benefit from reading this post to purely know they are not alone then I’ve done what I set out . After the conversation with the geneticist I turned to the only other person I know who would understand, another mother I met through therapies who had also gone through the same process.

After that deep conversation we came home and needed to pack to leave for the weekend, I’m glad we continued with our plans as normal because we really needed those good days to bring us all back up. Ariella loved seeing her grandparents and her face lit up when she realised where we were. The next day we were up early and headed straight to the Zoo, it was blissfully quiet and the best time to go. Bristol Zoo had changed a lot since I had last been, I really liked the changes they had made and it felt more child friendly than before. I’m not sure if this is because I hadn’t looked at it from that view before now instead looking at it as an older teenager previously. She enjoyed seeing all the animals, insects and reptiles with a few exceptions, mostly she loved the monkeys and the lion. Monkeys are a big interest for her at the moment so we went through Monkey Island quite a bit!

After a few hours in the Zoo, walking Ariella around and visiting the little park they have inside we met our friends for brunch in Clifton. If you’ve never been I really recommend visiting Clifton, it’s one of the most pretty parts of Bristol and there are lots of lovely walks. It was a good day for it given the weather held off and the sun did come out. By the time we had eaten and walked it was late afternoon so we headed back, we had been out for a long time by this point and Ariella was becoming a little eager to play with her toys. Just enough time to play before Ariella had her dinner and went to bed ready for us to head out to meet our friends again for a grown up dinner.

Zoo Lion

Ariella meeting one of the lions at the zoo

The rest of the weekend was very normal travelling and then a park trip, we headed back late morning and Ariella had her usual Burger King service station meal. She doesn’t get to eat chicken nuggets often at home (although I did grab some fish fingers for our freezer after seeing the latest Daily Mail article about some well-known mummy bloggers). It was refreshing to arrive home again, after all there’s no place like home.

Being Mum Lifestyle Parenting Weekly Update

Weekly Update – London Aquarium, progress and imagination

This week Ariella’s focus has been her soft toys, she has so many (they have their own little crate her in her room) but she has particular fondness for certain ones and more so one or two than others. One or perhaps more often two of these often follow her around at all times, it’s lovely to watch. Presently her favourite couple are Monkey (a firm favourite which I don’t see changing any time soon) and Zula from Bing. Zula was a present for her second birthday and she quickly learned her name, she’s been carrying and requesting her ever since. It’s now crucial that I remember to take at least two of her soft toy buddies in my change bag wherever we go, to avoid a tantrum melt down or being asked for them constantly. Lucky I have a bigger bag now!

This new found love for soft toys has followed through into other imaginative play, her kitchen particularly is being used much more often and her pram now hosts a little baby for her to mother. I try to alternate her toys so she doesn’t get too used to them, the kitchen tends to stay as is but everything else gets rotated. This helps keep her toys fresh and means we don’t have loads of things out on display at one time.

I keep two shelving areas for Ariella on rotation in the main living area, this is what we currently have out. Lots of open ended toys to try and encourage more fine motor as this is still a challenge at the moment and a focus of portage sessions – shape sorting, the wooden tray, she has puzzles in the basket, a little wooden puzzle she received for her birthday.

This shelf is more rotated than the other, the books are changed frequently with ones on her bookshelf, Ariella loves to read. More fine motor toys with a stacking cube, letter box to encourage squatting – I hold the box up high and she has to pickup the letters off the floor and post them and then the two little round pegs for fine motor again.

I’m really pleased with how well her kitchen is coming along, we’ve repurposed the basket which we used for her birthday celebrations as a shopping basket. She now has a lot more inside the cupboards due to lots of kind gifts for her birthday. We have branched out from just making soup which is great for her and for us! I would like to add a few more things but I’m still contemplating what would work best for Ariella.

Toddler hair style bunches

A new hairstyle this week, bunches!

Melissa and Doug food groups

Introducing Ariella to new food groups in her kitchen, these are from Melissa and Doug

New drums, playing them on a table

Ariella received some new drums this week.

In physiotherapy our focus now that Ariella is walking one handed is to squat down, to achieve this we are encouraging play which requires her to bend down or squat to reach an item and put it into something up high. Portage are onboard as well and luckily lent us this toy to use but we also have been making use of the wooden post box we have for this task too.

I wanted to share a few things we’ve been up to there is of course portage, physiotherapy but also we’ve had fun on play dates and lots of Spring house work! I’ve finally washed our sofa for one, which I’ve been putting off for ages. When Ariella was a baby she had reflux and our sofa took a serious hit – given the lack of time I had really been quite indecisive about arranging a company to come clean it or doing it myself and I went for the latter. Pleased it didn’t shrink! It looks much better now thankfully. Sometimes life is just full of these little “chores” and this week Ariella has had a cold (and was sick in her bed) so it seemed like the right time to cover lots of household things while we were mostly indoors anyway.

Our coffee machine gave up the old fight too, what a drag! Luckily it was still under warranty and was replaced immediately but I had to suffer down some instant one morning and that was a long day. I’m now officially a double shot or nothing lady. This did mean I had to find a seriously big box and packing materials for it with just 12 hours notice. I was glad that we had moved so often the last few years and accumulated a few boxes in our storage, do make sure you have packed everything before taping up a box though – you definitely don’t want to have just finished and turn around to find you’ve forgot to add the most important part.

Squatting

Ariella practising some physiotherapy exercises. We are currently working on squatting down for a ball and putting it into this toy.

It’s a long bank holiday weekend so thought it would be awesome to take Ariella into London for the morning, we’ve never shown her the aquarium but felt she was old enough now to appreciate it more. The train into London was as ever easy and we hit Waterloo before we knew it. The Sealife Aquarium is a short walk away, I couldn’t resist taking this picture it’s definitely one for the memory album.

Photo outside the London Eye

On our way to the Aquarium, couldn’t resist snapping this one!

At first Ariella didn’t want to step out of her stroller but a little coaxing and she picked up the confidence, the pictures are a little blurry at points and dark but there isn’t much light in the aquarium. Even though she didn’t want to get down during the first couple of sections I tried my best to include her.

Ariella was quite scared of the tunnel so we didn’t hang around too long inside it, the entire aquarium wraps around a big shark tank starting on the lower levels you slowly work your way upwards. It’s sectioned into various areas of the world (Pacific, tropical, shark reef, penguins and the thames) and the fish that occupy it.

London Aquarium shark tank tunnel

A tunnel through the shark tank

London Aquarium Fish

A neat way for children to watch the fish from a magnified porthole

It seems we picked the very best age for the visit as Ariella enjoyed getting up close to all the water tanks and she watched as a shark swam past her, recoiling a little. Lucky daddy wasn’t far away!

I was really pleased that Ariella wanted to walk a few sections holding on to our hands, we did some one handed walking and she was very confident. It was lovely to free up our hands a little and also a lot easier to walk when you aren’t having to bend over all the time. The tanks have plenty of cruising edges so she could go from one to the next with a little help from us.

Shark tank

Ariella on a lower level of the shark tank

One of the other sections was jellyfish and although I couldn’t get a good picture it was very sensory and beautiful to see them swimming around, Ariella was mesmerised. She loved the changing colours in the tank too and was confused when we tried to explain that we didn’t control the lights (unlike the ones at home Philips Hue).As we were exiting the crowds had picked up and it was all rather squishy, at some point Ariella dropped her monkey. We are usually very aware of monkey but alas not this time, after a quick look with no success we made our way to Wagamamas for lunch in the knowledge that we had a little ticking time bomb on our hands.

Walking into Waga’s I was already on the website that sold the monkey’s with one in my basket, sat down at the table and the order was through. But we had several days to get through before we could rectify the situation, we ate and once Ariella had demolished her lunch she looked up and said “Key? Redkey?”. We knew what she meant Monkey. I had quite a few alternatives with me so offered up Sula, Elle but no she looked at me at said “Redkey”. We were going to have a long, long weekend even after trying to explain that she had dropped Monkey and lost Monkey, well she wasn’t having it. Then my phone rang, I had lost all hope that anyone would actually call the phone number I had left on the label in a black sharpie. It was London after all and a tourist area, what were the chances that someone would pick him up and check? Well they did, either the staff member or someone gave it to them but someone from the London Eye phoned. They had the monkey, in the background they could probably her the protests for “Redkey??? Redkey???”. Thank goodness we thought, we promptly paid and headed back to collect the lost monkey.

Ariella with her monkey

Ariella is reunited with her monkey after losing it in the crowds.

I think she did understand that he was lost because when Monkey came back riding in Jamie’s jacket her face lit up and he stayed right there for a long time. In fact she felt promptly asleep! Monkey seems to be coming everywhere with us, as you can see this is us just this morning on our walk! Good old Monkey.

Our morning walk to the park