If I level with you, before this Summer I can’t recall the last “school” holiday that we made it through without some physical representation of frustration. Whether that be bites, scratches or bruises from items thrown the holidays were out of routine and they were fundamentally a stressful period for everyone. I had noticed that some of the happiest times we were when would go on holiday together, with friends, family the more adults the better.
Prior to the Summer I attended an autism workshop for parents which was most helpful and compounded some of the ideas that I had already read about, one of the key elements for me was confirmation in my analytical mind. I spend a lot of time trying to decipher behaviour to make up for the lack of communication between us and A. The more you look the more you begin to see patterns, usually challenging behaviour has a cause whether that’s one that can be rectified or not is another matter. One of the big flags for me always behaviour would decline when there was only one adult and A had to share attention. Probably not that unsurprising for many children and a trait I’m hoping over time will improve but alas here we are.
Finally admitting that nothing else we were putting in place was making a difference to the holiday periods we decided to employ a nanny. What a difference, affirmation of what I had suspected all along. The difference is so apparent that I now have a changed child, one who is enjoying her childhood in the most part and is happy. Once where holidays were times in which we couldn’t go outside because as soon as A had access to any other children she would hit and push them down, refuse the go outside but finally with just increasing that adult 1:1 ratio those behaviours have reduced. Where we might have had a meltdown seven times a day now it may be once a week or less. Unbelievable, right?
Like a child in a candy store after a few days inside while everyone got to grips with each other I planned to go out most days and filled our Summer schedule completely. So with that, this is what we got up to this Summer!
Phew, if you made it down here congratulations. We also visited Marwell Zoo, had plenty of hospital appointments, assessments, therapy, soft play and parks. All in the very last day of the holidays I was sad that our long, slow days were drawing to an end. It was refreshing to leave drop off and pick up behind, to work to our own rhythm and learn through play. Goodbye Summer, hello Autumn – next to plan half term!
A day before Ariella’s fourth birthday and one day after Autism awareness week has ended Ariella was diagnosed with Autistic Spectrum Disorder (ASD). We assumed that it was likely to be the case but knowing it is very definitive and I feel very at peace today. Up until now I have tried my best to describe the behaviours, the difference in the way A thinks and communicates without having the right words. I would often say “I think she’s autistic” or use all the descriptive phrases but what we really lacked was the support to know what is coming ahead. It probably sounds crazy but we are facing an unknown genetic condition, unknown prospects, we’ve never been sure at all that any of her blood tests, any of her immune reactions can be taken for certainty. When you are dealing with a rare condition that has no name, it’s impossible to look at the average. ASD is so well documented, I’m relieved to be able to put a name to the way that she behaves, the manner in which she “socialises” and communicates. The rigidity that ripples reaching far beyond just A and spills over into all of our lives. It’s reassuring to be able to justify the way we have to adapt finally, we have to adjust our expectations to new ways of thinking and that can seem rather overwhelming. But knowing why really helps put to bed any doubt in the methods – not that there were many.
On Sunday we took both children to Marwell Zoo as a birthday treat, once we had explained this to A she was keen to have birthday cake and candles. She walked her way into the Zoo with one aim, find cake, find candles. I tried to explain that we were here also to see the animals which was met by “No animals” repetitively. It’s not the first time we’ve taken her somewhere and immediately wondered if we have made the right choice, we’ve really not utilised a lot of attraction tickets over the years. When we visited Canada I think we probably did the quickest tour of Niagara Falls ever. We did after some time accept that we would need to find some cake, which we did. First we had ice cream, A has taken to moving her evening ice cream to pre food, so a starter rather than a dessert which is a direct result of me using it to keep her occupied while I cook in the evenings. After this she began asking for her lunch, which we knew would probably happen, we managed to take her to a playground briefly until the requests for lunch became frustrating and decided to take her for lunch instead.
It was after all her birthday treat and the aim was to keep her happy, while also giving Sebastian some time around to Zoo. Straight after finishing her meal she wanted to get up and go home. Which was rather predictable, again – we managed to add in a couple of visits around a few of the animals briefly and a small trip to another park. All in very predictable and we knew she would want to go home, but we still try because I think it’s really important that while she might be able to stand right next to a Rhinoceros and not even glance or acknowledge it meanwhile a black and white wheel is the most fascinating thing ever. Until we try we won’t know and neither does she, so try we must – always.
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 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.
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 don’t even know how to articulate the true mental voyage I went on yesterday. The day started well with a trip to the gym, making use of the creche facilities – but from start to end it’s felt like someone is puppeteering from above, trying desperately to steer me into a state of emergency.
Let me rewind back and explain how my last nursery toddler free day ended in being more about the toddler than the baby. Monday I received a text message to tell me Ariella’s prescriptions were in, perfect I thought – I’ll go get those Thursday on a nursery day. Taking Ariella into a shop like that in which you usually have to wait a small or potentially large amount of time is not an activity I’d choose to do ever – unless I have no choice.
Thursday comes and I visit the pharmacy, no epilepsy medicine just all the others. We have enough to last the day and Friday but not the weekend. The pharmacist assures me that it’s no problem, they aren’t sure why it wasn’t repeated but they would put it through as urgent and it should be ready Friday morning, at the latest Friday afternoon. It’s a little less time than I’d hope for, granted but I had no reason to think it wouldn’t be completely fine.
That evening Ariella does something really odd while sat in her highchair, an odd jerk and muscle twitch – we have no idea what happened but we do know it wasn’t right and are waiting for more information on this. There has been a lot of screaming, lots of hand tremors lately so we’ve had a heads up that something isn’t quite right, while concerned we move on – with plans to query this later.
Friday arrives, I go to the gym and just as I’m getting in the car to head home my phone rings. Nursery, well what is this going to be? I think pretty much every parent assumes the Calpol call, am I right? I never assume that anymore because I’m child is way past the Calpol call. Absent seizures, lots of absences reported throughout the day – I get a call later to say some odd things were occurring while she slept. Eight members of staff are surrounding her watching and waiting to see if she’s going to have a seizure. I know why because it’s terrifying alone, being alone and responsible for administering rescue medication is not to be taken lightly.
I get home and call the pharmacy to check the medication is in, my second task of the day. It hasn’t arrived yet but is probably going to be here by lunch time I’m told – call back later and if not the pharmacy will chase. Feeling a little unsure about waiting and relying on someone else to action the task I drive to the doctors surgery to speak with the receptionist, the very lovely lady informs me that the epilepsy medication has fallen off the list – somehow. Explained why the repeat didn’t go through, explained why the following urgent repeat didn’t go through too.
I called the doctors last week to check that it had processed through as the medication is often changing, increasing in dose and up until that point being distributed every two weeks. How did it go from all there and correctly change to every month, to not being there at all.
The receptionist takes all the details down and goes off to find a doctor to sign for a new prescription so it can be sent to my pharmacy. All being done urgently, I leave pretty reassured that I will get a phone call, the lady was nice and I could tell she understood the implications of going cold turkey from that medication. Lots of seizures. This lady followed through with her actions, thank you receptionist lady.
I do get the call, it’s ready at the pharmacy for me to go and request, for them to fill it and I would soon enough be heading my way down with my todo list ticked off. Reassured I head into the pharmacy, they look and say “It’s not in stock, but we can order it for tomorrow (Saturday)?”.
My brain just stops for a moment, the very same lady that I spoke to Thursday and had a conversation about the medication being required for Friday. The same lady who promised to chase the GP for me but never did knowing it needed to be filled the same day. The very same one is staring at me telling me there is no stock in…Today.
I explained again it needs to be administered at 6am Saturday morning and we run out this evening. They begin calling all the local pharmacies asking if anyone has any stock, three calls later – no stock. Finally one pharmacy does and the prescription is released, two boxes kept back and we can pick it up whenever. Relief again. Sorted, but not ticked off the list just yet.
Jamie heads out while I feed the children their dinner and reaches the new in stock pharmacy only to be told he needs a Docket. What the heck is a Docket? I get a call from him saying that the pharmacy won’t give him the prescription without a docket. I explain that it’s completely electronic, the original pharmacy was sent it electronically, we have no paper documentation after he tells me this docket is a piece of paper.
It’s now been several hours since my very last nursery day started and I was still without my child’s pills that she needed. I phone the new pharmacy and speak to them directly, after a really quick download from me in the most polite manner I could manage they ask for Ariella’s NHS number and it’s all rectified in seconds. Medicine in hand, job done, tick. Manic laughing and a glass of wine. What could possible go wrong next?
Oh that’s right, then there is also the seizure activity. Fingers crossed for a quiet weekend!
Out for a picnic and a trip to the park, we needed some lunch and I knew Ariella would find shopping difficult. I try to only go on nursery days but sometimes life doesn’t quite work out that way, we whipped around picking items off the shelf quickly, no time to browse – not quite as easy now that neither of us can eat gluten. Quickly tossing some strawberries into her hands, “Here Ariella, you hold this and we will take it to the till”. Task initiated.
Then begins the repetitive requests from Ariella…
“Ariella, door, door, till, door, door, DOOR, scream, DOOR, scream, -insert random phrase that she likes to repeat when overwhelmed- “.
My reassurances trying to calm her failing I quickly gave the coveted strawberries to the lady on the till and back again to Ariella. Onto the next stop on the train tracks in her mind.
I pay, swiftly roll my double pram out the doors parking up outside and wrestle all the food into the pram. Sebastians sat quietly chewing on his fist, smiling up like business as usual. Yes business as usual, just as I’m about to sigh with relief that the shopping is over with a hunched middle aged man walks slowly out of the shop and says…
“She’s a delight”
But not in a good way, in that sarcastic voice that people reserve to cause offence. I turn around, wondering if I heard correctly? “Pardon?” looking him in the eye. He repeats again “I said, she’s a delight isn’t she!”.
I don’t reply, quite shocked – my first proper complaint against her lack of ability to comply. His wife says “come on, lets go” and off they wonder together, slowly. We head off to the park where Ariella has a fantastic day in the park out in the sun and for the first time she plays away from me with distance while I play with Sebastian sat on a park bench.
I have so much empathy for parents of children who scream, whether that be a rare one off occasional or a daily, hourly, minute by minute event. It’s really frustrating to hear, it’s shocking, it’s abrupt, it sets you on edge.
Never take for granted the freedom of watching what you like on television without your child screaming between each and every transition, being able to drive your car in whatever direction you like to whichever destination you like, spontaneously visiting a shop to buy something, browsing – oh you lucky devils, buying a coffee, stopping to speak to anyone in the street, speaking to your neighbours outside, playing with toys that make sounds, singing to yourself, going to a music festival, waiting for anything at all! I know when you are out and about, going about your day the last thing you want to hear and witness is a child having a meltdown, I say meltdown because I don’t believe the majority of children with additional needs are having constant tantrums. I know certainly there are a lot of sensory concerns playing their part and a absolutely -need- for the child to respond with a scream, sometimes Ariella will try very hard to hold the scream in.
I don’t want to be screamed at all day, I know it doesn’t sound nice but we can’t stop our children from doing it because they either feel they need to or because understanding and developing takes longer and requires more repetition which comes from more exposure and experience than a neuro typical child. As a society we need to learn tolerance and we need to learn to be more patient, with everyone!
I’ve noticed that as Ariella grows older the tolerance from society appears to becoming weaker, when she walks around she often stumbles sideways and will correct herself or she walks into people. I see less smiles now and more frowns, which is such a shame but we do not like being restricted in speed and pace how often do we want to pass or hurry up a learner driving a car? Easily forgetting that we once sat where they do, learning to drive and that everyone must start somewhere. Never forget that you take your own independence and ability for granted, a simple change in circumstances could shift your world.
For the first time this week a member of the public reported our use of a disabled bay – quite wrongly too not that it matters as we do indeed have a blue badge. I had noticed a lady staring over and wondered if she was going to speak up but she decided to take her complaint to the reception of a local gym I was attending. I’m sure if the new changes to the blue badge scheme do come in, then this will happen a lot more for those with hidden disabilities, society assumes disability based on appearances. Yet if you look closely you can see the differences in gait, only because Ariella is a child the lady probably just made assumptions. I kindly told the security staff that the bay was being used correctly, there were no problems. But it left a sour taste that one lady could look and complain based on assumptions, I hope she was told that she had made an error and can learn from her experience.
So what can you do to help?
If you see a child screaming or struggling and you need to interact always consider that the child might have additional needs. If you’d like to help in a positive way remember to:
Use clear simplified language;
Explain what you are about to do, using Makaton (sign, symbols and speech) or first, and next structured instructions;
Give the child extra time to respond to you;
Appreciate that the child may have sensory processing difficulties and may need to find somewhere to calm down; and
Remember that even neuro typical children struggle with their emotions and adjust your expectations.
“Do the best you can until you know better. Then when you know better, do better.”
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.
Usually we have a lot of fun this season, with Halloween and FireworkNight 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.
“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.
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.