What day is it? I am sorry if you are reading this and you are one of the many friends I’ve forgotten to reply to. It has been like groundhog day here, Ariella is now attending nursery school every weekday but only for limited hours. The adjustment for her has been a challenge, the adjustment for me even more so.
It’s been a struggle losing my 1:1 time with Sebastian, having two days a week in which I can spend catching up with all the chores. From simply keeping on top of the pharmacy trips, multiple medicines all organised at different refresh times, to making sure we have food to eat, clothes to wear, feeding the cats, keeping the house generally just moving forward. When you have what equates to a nap time free each day suddenly it feels like you are on the clock, I have certainly dropped a bunch of things and I am so thankful that we have some outside help to keep everything “clean”.
Scattered along the month are weeks where there are hospital visits, this week scheduled an MRI and a Gastro appointment. The MRI went really well, so much less dramatic than last time – which you can read about here. This time a little bit of gas and she was fast asleep, no worrying about cannulation or MRI machines, no fire alarms going off above her, no vomiting, just sleep and actually peace. Of course it’s always a worry when your child is to undergo general anaesthesia but I enjoyed a really nice cup of coffee and we were happy she was in very safe hands.
When she eventually came around she was sleepy but happy, in fact the most distress she felt was from forgoing her breakfast and the nurses observations afterwards. With each check her heart rate would spike until the nurse soon realised she needed to leave the room to get a normal reading. Seeing her little heart rate spike really made me appreciate how anxious hospitals make Ariella and that I should try and remember this whenever she is having a meltdown.
I have of course applied to have her results sent to me ASAP, I’m not one to wait for the next consultant appointment. Looking forward to getting those through, I would hate to attend the appointment and have it sprung on me should there be any significant changes. Fingers crossed that the results come back positive!
Really glad it is the weekend, time to relax a little and prepare for October which will bring more blood tests, a hearing test, a vision test, a new weekly speech and language group and of course Halloween! It’s also going to be time to start visiting specialist schools, which is quite a daunting prospect but I am looking forward to seeing how they can best support Ariella.
Last month I drafted a very long post about social media and connection, I was about to publish it and then I came across an article online which completely changed my outlook. It was about humanity and the blame culture, I realised complaining about humanity and the way we rely so heavily on social media was counter productive.
Rather than complain and point fingers at faults, how could I work to improve my own use of social media? It’s our responsibility to model the things we want to see and value in society, kindness, compassion and meaningful interaction. I think lately this ties in well with the current issues we are experiencing globally and the social awareness towards our environmental impact. For one currently in the eye of the media is the plastic in the sea, the strange weather we’ve been experiencing – both of these things have raised important questions about bringing home the important of our own impact on our future.
Starting again using a more positive framework, I’ve recently taken a break from my own personal social media accounts. It’s so easy to use up the idle time between tasks with a quick swipe of Facebook and scroll down the feed. I wanted to be present more mentally and I’d like to maintain more of my friendships outside of this viewfinder kind of window box world.
I have found being more “offline” has meant I am much more productive, much more aware, much less attached to my phone although I do still use it for Instagram which I love. I find little snapshots and images are far quicker to process and disconnect from. Right now I’m using my time to keep on top of all the tasks required to organise two children, one with many medical needs, two cats, a household. I’m finding far more time for myself, I now attend the gym which I have always thought about doing but never wanted to invest time into during the evenings. I’ve lost 20lbs in weight (comparing my pre pregnancy weight) and am the slimmest and the most physically fit that I have ever been in my life thus far. My original motivation was to get stronger as my wrists and arms were beginning to ache every day carrying Ariella, fortunately I have done this but she also has started to become stronger herself and needing me slightly less so now I am beginning to lose my tolerance for carrying her at all.
I’m not sure it was constructive for me to always be so visually aware of the things that children the same age as Ariella are doing. It’s much easier to just live in the now and work with her timeline than to see what she “would” of been doing had things been different. So far it’s going really well for me, my friends have mostly adapted to letting me know when they want to chat and use more direct means. It does mean that occasionally I miss announcements but much like sending a letter in the post compared to email, most of the time it still arrives.
We’ve been making some positive changes generally to our lifestyle, Sebastian is now using Eco nappies which is really just one tiny change but it makes me feel a little better. I can’t quite get my mind around going full cloth after comments about having a poo spatula from others but we are trying the Eco Naty disposables that are biodegradable. So far I really like them, they aren’t as absorbent as say Pampers which we use over night, so need changing about as often as cloth would but it’s a good positive start on removing something that really does not degrade – nappies and we use a lot of them!
What have we been up to?
If you’ve been keeping tabs on my instagram you will have seen that we all entered the 100,000 genome project last month – linked in case you would like to read more about the project. It’s the very best chance we have to find a diagnosis for Ariella, I am so pleased we are finally in the system and although it will be many years (around 1 – 2 at least) there was the possibility we could well have missed the deadline as it is now closed. Last May 2017 the discussion of the project being the next step was raised, but we didn’t hear anything back and after chasing we have just met the deadline, I can’t tell you how horrified I would have been if we had not been able to enter. It’s a very important project in which the whole genome is considered against the medical record data, a position in which the NHS is well suited to accommodate in England. Hopefully in future years the data gained will benefit in more ways that I can imagine, certainly if it can help stop future families living a lifetime of uncertainty about their child’s health that will in itself be more than enough.
We also saw Neurology at the same time when visiting St Georges Hospital, Ariella will be having another MRI at the end of the month this time under general anaesthetic. Probably for the best given the last MRI she woke up during it.
Sebastian, Mr Snotty
Sebastian is doing well, progressing well, sleeping well, smiling – he is a very happy chap with his two teeth. Every day is interesting and every day I’m reminded of how different my experience is this time around. He is almost crawling now, luckily everything is baby proofed still. We still have our stair gates in place as Ariella has just started to crawl downstairs. I am looking forward to getting more one to one time with Sebastian once Ariella starts preschool next week Ariella has now finished nursery but previously nursery days were often unwillingly Ariella admin days.
I have had a whole week with the two children, it has reminded me that actually once you get into a rhythm is isn’t all that bad. To keep busy and feel somewhat in control I planned the weeks events out in my new paper diary, this worked really well and I was able to prepare Ariella every day better. I don’t know why I didn’t do this before, it’s much easier and you can actually make good use of your time. So often I would just waste time or not be efficient with being “outside” and doing the outdoor tasks all together. When you have so many steps to come up and down with two children attached to you, you begin to appreciate reducing those trips up and down. I was fortunate that this past week Ariella’s seizures have calmed down slightly so she has been happier in herself.
This week we tried to make use of some of the memberships we have with the National Trust and RHS, we visited the local Arboretum which both children seemed to enjoy. We took many trips to various local parks to feed the ducks, use the swings and go for walks. We stopped by our local garden centre for ice cream and to use their garden piano which Ariella is so fond of and finally ending with a trip South to the beach, soft play and swimming. Ariella sleeps better when she’s had some good daily physical exertion now, if we stay indoors the whole day then bedtime can be a little prolonged.
Splashing in puddles
September means new beginnings for all of us, preschool every day (eventually) will be quite an adjustment. It will feel I’m sure much like the school run, I hope we adjust to it okay. I hope that Ariella adjusts to her new “nursery” okay too, she will get lots of support so I’m sure that will make it easier for her. Right now she is often going through weeks of phases where she is quite confused, repeating phrases, screaming and generally seeming quite distressed. It feels like there is a lot going on neurologically, I hope that we get some answers soon so that she can carry on moving forward more and we all have a calmer environment. The change in state seems to go hand in hand with seizure activity, absences, tremors, a new kind of seizure too where her body muscles jerk oddly for a few seconds then stop.
Medication is going up but once the seizure activity passes we have a few weeks of calm (with the normal challenges) again.
I often feel like I can’t quite keep up with the updates of what is going on, each week is different. I try and write about what we are up to and then the goal posts will change!
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.
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.
Given when I left you I feel like you are in need of a progress update. We were able to avoid heading into the children’s ward at the local hospital by a few hours, luckily Ariella’s physiotherapist had time to catch up with the messages I had left just before Ariella’s Hydrotherapy session on Wednesday. I got a call in the morning by luck her therapist was going to be in the Hydrotherapy session and would be able to check out her left leg by pool side. Excellent, I knew our doctor would be calling me back in the afternoon and if she hadn’t been seen then it would of meant clogging up the hospital system.
Ariella has been very temperamental lately, she switches from happy to fearful in most circumstances which can be quite difficult to manage. Usually this makes her arch her back and as of late she has taken to biting. We took her swimming on the weekend and immediately entering the changing room she became distressed and unconsolable, it’s quite difficult now she is bigger to get her dressed when she is in this mindset as she cannot stand unsupported and the pull down changing mats are too small for her or don’t support her weight.
So I was quite prepared for the same kind of result on Wednesday and as expected she screamed the place down. Luckily the Hydrotherapy pool is situated in a special unit and they have a very big changing bed, this makes things a lot easier for us. I was hoping that her physiotherapist would be able to check her out on the changing bed too but Ariella wouldn’t let anyone touch her without kicking and screaming so instead she opted to check her hips in the pool.
This worked nicely, in the pool most of the time Ariella was happy enough unless I tried to lie her flat on the water – she used to be quite happy to do this but for some reason she wasn’t this week. The session has a high ratio of therapists to children, we are normally just a class of three but today only the two of us had turned up so we had 1.5 therapists each. The swim exercises are much like Waterbabies if you’ve ever watched those, but slower and with some additional aids put in place in case the children are unable to support themselves in the water as expected.
After the Hydrotherapy session ended I walked Ariella up and down the side of the pool so that her leg turn could be inspected. She is still holding on leg out towards the side rather than straight, but her muscles seem to be okay. The therapist said that from a physiological point of view she is happy and she couldn’t explain why the sudden change had occurred, but agreed to see us next week in clinic for a physiotherapy session. Good news! Ariella screamed getting dressed and while I was getting dressed and then we dashed back home in time for our Portage assessment.
Portage (Early education support service):
This service is available to you if you have children aged up to three and a half years with significant developmental or other needs. The portage teacher or support worker will work through activities with you, supporting you to help your child’s learning and development.
The assessment establishes whether your child qualifies by asking lots of questions about them and how they would typically react to certain situations. One of the nice things about this service is it’s home based, which is one less appointment to plan travelling to. The bad thing about it is that if you are accepted then the waiting list is long, but that seems to be the case for quite a few services at the moment. The assessment went well and although we don’t have a formal letter yet the lovely lady indicated that from my answers Ariella should qualify. One thing this did establish is where the line between Portage and Occupational Therapy (OT) sits, they are two different services and I’m told that OT in our area has such a long wait list that we would be best to look privately, I think we will consider this.
Once the Portage assessment was over (it took a few hours) then I called the doctor back, I had missed their first call as I wasn’t expecting them to call me back until 4pm. The doctor was happy that Ariella had been seen and is hopeful that physio next week can work to progress with Ariella’s leg. If progress isn’t made then it can be considered further, I asked whether it would be prudent to contact her Neurosurgeon team to update them too and she agreed (which reminds me I need to do that!)
After getting off the phone I found I had two emails in my inbox, one from the Ophthalmologist at Great Ormond Street (GOSH) and one from the records department at GOSH. The Ophthalmologist was just letting me know that they were able to bring Ariella’s appointment forward to early February instead of on the same day as her Neurosurgery appointment. This is good because initially she was assigned an appointment hours before Neurosurgery which while would be great from a travel perspective wasn’t that logical as we were to discuss the results of the Ophthalmologist during NS. As these things tend to be I emailed to ask whether the report would be available in such a short time, I thought the answer would be no and as suspected it was.
The other email from the records department was confirming that they had received my form requesting the MRI results and Radiographer report but would now need payment. Lucky for me I had already sent it separately along with a bunch of copies of our identity documents and I knew the letter would hit their desk on Wednesday or at the latest today. I replied immediately to let them know this and I got a pretty swift reply saying they would apply for the results immediately. Great news again!
I had a few lovely clothes orders arrive on Wednesday too, finishing off Ariella’s holiday wardrobe which I’ll post about imminently. I’ve been quite sad that I haven’t been able to exercise as I’ve been so unwell, but my Lunchbots order also arrived so I think that has inspired me to get back into the healthy kick mentality and I’m more enthusiastic than ever about how these little boxes will change our lunch eating habits. I ordered one for all of us along with their sauce pots so we can eat bento style, once we’ve started doing it for a little while I’ll update you with a post.
That was Wednesday, I was feeling pretty rough during the course of this but needs must. We did manage a park visit purely because I felt like Ariella needed to go outside and see some fresh air. That evening we unintentionally had to order takeaway due to some very poor quality sweet potatoes (thanks for that Tesco) but I feel perhaps it was for the best. The best thing was by the end of the evening we had resolved quite a few concerns, Ariella’s leg had been checked, the MRI results were being actioned on (they quote forty days for this so knowing it was being dealt with now was very good), the portage lady had been very supportive and I was finally starting to feel better.
Today Ariella woke with a fever, she hadn’t been eating much over the last few days so perhaps this is why. She started coughing in the night and vomited her food up yesterday evening. I knew when she let us lie in until 7am that today was going to be a slow day, perfect! We had nothing in the diary and I was very thankful for it. We watched Harry Potter films and Ariella spent the day playing on her iPad, watching TV and playing with a few toys. We’ve been on a rotation of Calpol and Nurofen to keep her fever low, whenever it spikes she vomits.
Two very good things happened today, I heard from the GOSH records department to say that everything had been received and that they were posting a CD and the report to us recorded delivery as well as a password due to the CD being encrypted. This was amazing news, soon, very soon after waiting so many months we will have a huge amount of clarity over what was seen on the original ultrasound of her brain. For me having seen the ultrasounds the very best outcome I allow myself to consider is that its just the Corpus Calloum and is just slightly thiner than expected. The worst outcome could be more abnormalities or something life limiting flagging up. But I feel that we need to know and that I would prefer to know in the comfort of my own home so I can be prepared when we speak to the Neurosurgeon in February.
The other amazing thing that marks the 12th of January 2017 as an eventful day is that it snowed today. This is the very first time Ariella has ever experienced snow, we took her outside and allowed her to see it and feel it. At first she was a little unsure but I think by the end she could see the beauty in it.
I’m so glad we had newborn photos taken of Ariella, even though she’s older now and has developed a more child like face it’s lovely to look back in such detail. You forget the details you see, the dry skin on their hands and feet from being cooped up in a liquid world for so long. You forget that they always had the little face they have today, but it was just slightly changed. Photography today captures childhood completely, all the minute details, the milky beards, the fresh new nails, down to the odd hairs on her ears (anyone else?).
Yes I’m glad we captured that moment for eternity, I’ve been debating for some time when is best to next get more photographs taken. We decided not to for her first birthday even though I would have been first in line to do a “cake smash” style setup, I just did not get around to organising it. When next? Perhaps when she is two?
It must be something to grow up in the new world with every moment of your childhood documented, recorded and adored. I think my own parents who had four children they have a lot of their first born, some of their second. I was their third child and I do happen to have a photo album of key events, my youngest brother he only has a couple of pictures of himself as a little baby. Then of course there are our children, I think I’ve probably got a photo or video of every day Ariella has lived. I’m glad that I can offer her such a vast amount of memories to share with her when she is older, to show her all the things we did together. How much she was adored.
A camera is a save button for the minds eye – Roger Kingston
I remember once seeing a video of another parent who took a video of his daughter every day for many years, he collated the pictures together. You can watch it below, I’d love to do something like this with Ariella when she is a little older! If you don’t have the video opportunities you can always just use photo’s (another example below too).
I hope you might leave here inspired to go and capture your own children’s childhood eternally, I can’t imagine the dedication required to stay the course in capturing each image every day or week but I cannot argue with the overall effect. I myself am certainly inspired!
I had such high hopes for this week, we had lots of lovely things planned starting with a music class, classical music performance to watch and finally a Christmas market/fair. Then on Monday morning I woke up with Ariella’s cold and I knew then that the week was going to be challenging. I understand that children pass germs and viruses around, they don’t really understand the concept of breeding germs but my immune system has taken such a battering since becoming a parent. Somehow I managed to survive the first year without a single cold, but now Ariella touches everything and mixes with other children it’s just a matter of time until the next and the next.
Due to my inability to function as a person we started our Monday off pretty quietly, it’s not too long before a toddler realises that they’ve been indoors all day so the easy morning can only last so long. We worked through as many activities as I could encourage her to be interested in, she played with her Teddy. She has learnt to share her stacking cups and pretend they are cups of tea along with a big slurping sound. It was lovely to see such great pretend play.
Cup of tea Bear?
I also really wanted her to start practicing more with her cubes on the spindle as this activity helps children thread later on and works on fine motor skills. It’s something she until this week couldn’t quite do fully but she mastered it!
Mastering blocks on a wooden spindle, well done Ariella!
Never underestimate the fact that parents do not get to recover from their illnesses, I think every illness I’ve had since Ariella has taken me double the time it used to recover from. After realising this yesterday I’ve decided it’s because life just continues as normal when you are unwell. I’m not medically trained, just an observation but I guess if you are not resting then it would make sense?
When I’m not feeling 100% it’s hard to muster the energy to do new interesting activities, we spent a lot of time at the park this week which is my go to. Ariella absolutely loves the swings though so I don’t think she minds! Being in a totally lazy mood I also didn’t feel like cooking, so lunch on Tuesday was a quick trip to a local sandwich shop Pegs Parlour on Godalming high street. We hadn’t ordered from there before but It was delicious and I highly recommend you pop in for a visit. I don’t eat meat so sometimes sandwich choices can be quite limited, the kind member of staff recommended the goats cheese and caramelised onion filling for me. He made one up and a cheese sandwich for Ariella, both to takeaway and off we went. We will definitely be going back!
Sadly we didn’t make it to the music class which is our weekly class in the mornings, we could have gone but I really didn’t want to infect everyone else. I was in full cold mode, spending most of my time running around with a bunch of tissues in my pocket and in no real state to want to sit in a room trying not to cough or sneeze. Am I the only one who thinks this?
To make up for my completely lack of effort in the food department at lunch I felt I should try something new for dinner so I did whip up a storm using a new sweet and sour recipe recommended from one of my friends months ago. It went down a treat, I was surprised how little sugar you can use when making it yourself. Normally we don’t have sugar in our sauces which is why I have to make everything from scratch all the time.
What’s new?
Communication
We had a couple of new things happen this week, Ariella’s vocabulary is increasing day by day. She can now say “Cow” and make the noise to go with Moo. Also she likes to say “Ready, Steady, Go!” all together and my favourite “No” pronounced Noaw. Learning to say no has certainly made things interesting, not because she uses it irrationally – no in fact she doesn’t say it that often. But because now It’s very clear what she wants and does not want, we ask Ariella a lot of questions. “Do you want to do this? Do you want to do that? Do you want to get out the bath?” now she understands to express her view sometimes respecting it can be challenging. We try though!
We have also had lots of fun with our lighting, Ariella can say all the colours and so far seems to really love “purpurl” purple, we let her shout out the colours and change the lamps to suit. It’s easily done with the Phillips Hue lighting system and can be easily be controlled from the luxury of our mobile phones, or by just asking Siri on our watches.
Physical and Motor Development
Gross mobility has come along slowly too, although she doesn’t seem to be too interested in walking much she can now get down herself when climbing the sofa. This is great, no more worrying that she’s going to fall off or frustration from her because she can get up but cannot get down again. Next week I’ll try introducing the stairs more again, she does have access to a staircase 24/7 while at home. We have a neat little one which has walls on each side so it’s rather safe to learn on (the others are gated!), she doesn’t show much interest in it at present though.
I almost forgot – Ariella learnt to dance! On demand.
I’ve spent all week trying to get her to stack a tower of blocks working on fine motor, will she? No. She loves knocking them down though, I think that’s just how she likes to be. She can stack a single block if in the mood and she enjoys the spindle blocks which helping a lot. Ariella also has been practicing with her little activity cube from Asda, dropping balls down the track and has shown some interest in positioning the cars on her ELC Click Clack Track. It’s been quite difficult to take her interest away from her iPad this week, I don’t know if using an iPad counts as fine motor? I guess it does, she’s become quite good at manipulating the objects. Check out the little video below.
Sensory and Cognitive Development
Ariella has really come on a long way since her review in this area, she understands now that objects don’t just disappear if she cannot see them. She likes to hide her sticky dots for her bath under the bathroom rug and knows when I hide her iPad that it’s not gone (mean mummy!)
This week she learnt about different shapes and their names, she can even say certain ones and she’s able to complete the shape puzzles used in the review. We are trying to move towards using a shape sorter but I think once fine motor improves she will be mastering the sorter in no time.
Here’s a few pictures of our week, I shan’t bore you with a blow-by-blow account all you need to know if it’s been raining a lot and pretty cold here in England. However we have had lots of festive fun, with the cold season starting the various fairs and markets are kicking off. We intend to end our week on a high with a trip to a Christmas Market this afternoon!
Autumnal park fun!
Goats cheese and caramelised onion sandwich from Pegs Parlour in Godalming
It arrived! Polarn O. Pyret all in one suit!
Devotion, pushing the swing in a rainstorm
Testing out the new suit!
The first minced pie of the season
Practicing standing ready for a trip outside.
Trip to check out the Guildford Cathedral Christmas Market
Lunch at Zizi’s in Richmond, London. Lovely children menu, went down well!
At the dentist, waiting for a long time (two hygienist appointments back to back). She did very well!
The Good the Bad and the Ugly
The whole week so far has been a bit of a silly flop, we couldn’t go to the music class as I haven’t been well. Our trip to the park ended up with me soaked to the bone in a deserted playground pushing Ariella on a swing in a rainstorm, with a cold and no coat (silly me!). Once I was well enough Thursday we missed the classical music children’s show because there was nowhere to park, on Friday we went to a local Christmas Fair which was advertised as a big market in Guildford. The most amusing part of Friday was trying to find the place with one of my lovely mummy friends and her son, we certainly worked off the chocolate cake we had once there but the market turned out to be more of a crafting fair.
To top it all off a trip to the dentist, which actually was quite amusing for Ariella at least. I have my fingers crossed that today will be better, we are off shortly to another Christmas Market this afternoon, if I don’t get some mulled wine this time I’m going to write the week off entirely.
On the plus side, Ariella got a new hat, she visited the park A LOT, her new all in one came so things aren’t as difficult outside in the rain without her walking, Ariella isn’t unwell thank goodness and I’m starting to feel better finally.
All in a days lifetimes work eh? I did get a minced pie though, just saying.
Sunday started pretty relaxed, we had a couple of things on the to-do list, Jamie (the husband) was tasked with taking a bunch of items to the local recycling centre, I needed to find those items from around the house – we often wait and bulk up until we have enough that needs recycling to make the trip worth while. It feels great to have lots of extra space again, we had acquired silly things like two steam mops and two floor mops (yes lots of mops). I guess these things are made, bought and then when they break they are a pain to actually get rid of. We’ve also gone completely digital, finally we have taken all our DVD’s everything from games to films and they’ve been sent packing, even the PS3 is gone. Of course now everything is either stored digitally or streamed, there really isn’t much need for physical media and if anything it’s more effort to retrieve. I’m a huge fan of really clearing out things that just aren’t used, it’s how we maintain such a organised life here, our cupboards are organised purely because the things in them are used and put back. Everything has a place, if it has a use!
After all that hard work, we had earned a nice lunch, home made Eggs Royale all round!
Ariella loves eggs just like her dad, she also likes smoked salmon although doesn’t get it too often due to the salt content and is a big fan of home made hollandaise sauce on top of a poached egg. Once she caught sight of it, she was pretty difficult to keep distracted while hers cooled down.
Lunch followed a long nap for Ariella she usually sleeps for two hours in the day now, this was perfect for us to get ready for the afternoon. Since joining as members of the National Trust we’ve been seeking out new places to go visit and Surrey is absolutely filled with venues. Alongside looking for somewhere to spend the afternoon we also decided to really start hitting the Christmas Shopping list, we ordered Ariella’s main Christmas present from us (we’ve gone down the route of a kitchen and accessories). This will hopefully help her to stand up and play more and work alongside encouraging imaginative play. I’m hoping to top up her presents with extra from “Santa” for her personalised sack that we bought her last year from a store on Etsy.
Once Ariella woke up we packed up the car and drove to check out Polesden Lacey.
‘This is a delicious house…’ remarked Queen Elizabeth, the Queen Mother on her honeymoon at Polesden Lacey. This country retreat, only four miles from Dorking and junction 9 of the M25, has glorious views across the rolling Surrey Hills and acres of countryside. It was home to famous Edwardian hostess Mrs Greville, who entertained royalty and the celebrities of her time.
Marvel at the glittering Gold Room, designed to impress kings and maharajahs, or Mrs Greville’s extensive collection of art and ceramics ranging from world-famous Dutch old masters to sparkling Fabergé objects.
The gardens offer something for every season, including climbing roses at their best in June, a herbaceous border that we’re currently restoring to pre-war glories and a winter garden bursting with yellow aconites.
The wider estate provides plenty of space to let off steam on a walk through woodland or over rolling hills, with four waymarked trails to try.
– Official Website
On arrival we were surprised how vast everything was, there are walks that you can do up to around two and a half hours (maybe another day!). The carpark was packed and there were so many people which surprised us as we did go later in afternoon.
We were really just looking for somewhere to walk but we were hoping to actually go into the house too, sadly one of the staff waiting by the entrance to the house said they were closing. Which was quite surprising as it was only 3:20pm! However we are hoping to visit again during the Christmas festivities they have planned and it’s only a forty minute drive so disappointing but we hadn’t made the trip exclusively to view inside the house.
The grounds are truly beautiful it’s really no wonder that this is one of the National Trusts most popular venues. Looking out onto the renowned Surrey Hills, I could very easily picture living here back in the 1900’s. The gardens were very well maintained and in spring and summer would be spectacular, at the moment everything is sitting quite dormant preparing for the long winter ahead. Even driving to the property was a treat, it’s a really pretty area. Over the weekend I ordered Ariella an all in one waterproof fleece overall from Polarn O. Pyret so once that arrives (providing it fits) I’ll be able to put Ariella down on the Autumn/Winter ground to explore more for herself.
There is a play area too but it’s a little walk from the main parts of the property and we didn’t have our wellies on (we were hoping to spend more time in the house). Certainly though we will be taking a look at that next time. It was great getting about with the Tula Toddler, although we did see plenty of families pushing strollers/prams around so if you wanted you could definitely do that too. One downside was that they had wrapped up the statues for winter, they had done this tastefully with white material and white tape but it was a shame. I can understand why though, to preserve them but It did definitely felt like the venue was somewhat like the plants in a dormant phase, preparing for the winter and that if we wanted to see it in it’s best light we would have to come again (which we will be! Look out for the Christmas 1930’s makeover blog post that I will be doing once we visit in December).
After a little walk around to see the chickens and stomp around the grounds we decided to head back so that I could make dinner ready for Ariella. She always eats at 5-5:30pm and predictably in the car on the way home she was having a few grumbling moments about us daring to allow her stomach to remain empty. This evening we all had Paneer Butter Masala which is a very mild creamy curry, I have been making this dish since long before Ariella was born. My first taste of paneer was actually during our honeymoon in the Maldives, once of the dishes offered was Butter Paneer and once home I loved it so much that I had to find a recipe. As you can see, she loved it and if you fancy trying it at home you can follow the recipe here.
Right at the end of eating Ariella decided to run her hands through her hair (Noooooooooooo) so we had to give her a bath. We don’t bathe her every night, it’s definitely not part of her routine for bed and it seems to work quite well for her skin type. But alas tonight we did! Ariella suddenly developed a phobia of the bath, completely out of no where but we’ve been able to tackle this by using her bath toys – mostly George from Peppa Pig, this along with some reasoned talk seems to get her into the bath and happy once in to stay there. It was lovely to end such a wonderful day with a long line of words from Ariella, Jamie was showing her how bubbles from the bath can be squished together in the air and float down like snow. Alongside this saying “Ready, steady, go!” and Ariella copied every word completely and fully.
The grounds are truly beautiful it’s really no wonder that this is one of the National Trusts most popular venues. Looking out onto the renowned Surrey Hills, I could very easily picture living here back in the 1900’s. The gardens were very well maintained and in spring and summer would be spectacular, at the moment everything is sitting quite dormant preparing for the long winter ahead. Even driving to the property was a treat, it’s a really pretty area. Over the weekend I ordered Ariella an all in one waterproof fleece overall from Polarn O. Pyret so once that arrives (providing it fits) I’ll be able to put Ariella down on the Autumn/Winter ground to explore more for herself.
