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When you have more questions than answers

Monday we visited Ariella’s physiotherapist, its was a morning appointment but with the likelihood of me arriving back around lunch time I knew there was a chance we would miss the post lady. The appointment went very well, Ariella’s leg has resolved itself and we now believe that this was due to her feeling unwell. Her therapist checked her leg again and we did some play exercises, reaching around cruising benches for toys. We were both pleased to see that she was walking normally again, which was very reassuring to see! We agreed that it was good that she had been seen limping by her therapist because such a dramatic change from the flu/common cold is hard to believe.

What wonderful news to start the morning off, Ariella was walking around looking very pleased with herself – she felt stable and was letting go of one of my hands to pop the bubbles without wobbling. We are really hoping she will start to walk independently soon. After the sessions we jumped into the car and headed home for lunch, as I was pulling into the drive I saw the little royal mail red drag along cart they use. My first thought was “Will I have missed her?”, I knew that I had to sign for Ariella’s MRI report and CD and that if I wasn’t in I’d have to wait another day. Luckily the post lady was just making her way down to leave when she spotted me and I signed for it as I got out of the car. Perfect timing! I thanked her a lot, she probably wondered what she had delivered to me!

Ariella was suitably tired from the session that I knew she would have lunch and then probably take a long nap. During which I could open the letter, look at the CD and look at the radiographer report for her recent MRI. That’s exactly what happened, we don’t really own a laptop that can take a CD anymore so Jamie had prepared an older machine which we had wiped completely ready for it’s new home the night before in preparation. I didn’t know it would come Monday, I had waited in all Friday and most of Saturday for it’s arrival too. In fact the most peaceful day in our home for me was probably Sunday because I knew there would be no post. Anyway it arrived and with it the worry of what I might find out imminently. I think I probably paced the room a few times by myself while Ariella slept completely silently in her bed, I shoved the disc into the machine and waited for it to engage. By the time I had come back with a coffee it was ready and I used a special password that was sent me to unlock the CD and MRI viewing program.

I think the first thing I thought was how different the software was compared to the one used for my own MRI many years before. It wasn’t too complex to understand but took me a few moments to load the correct scans, they are separated by types of view – which I now understand what these show and the purpose of them. But at the time it took a little while to understand and then to further my understanding of the scan slices navigating my way through my daughters brain slice by slice. I knew what I was looking for originally, I wanted the sagittal view going from side to side so that I could first identify the Corpus Callosum. I knew this would be the easiest part for me to identify due to my huge amount of reading I have done on the subject, MRI, Ultrasound and classification of the various parts of it. I first will say that I’m not trained in medicine and we of course wait for the Neurosurgeon to diagnose Ariella, I requested the results myself because I don’t like surprises that are sprung on me in the moment, where I don’t have time to understand or relate the words to whatever context someone is trying to explain them to me in.

I believe the Corpus Callosum is thinner than typical for her age, it shows signs in my view of Hypoplasia (underdeveloped) which fits under the umbrella term Dysgenesis of the Corpus Callosum. This is what the ultrasound at three months suspected and I think that this is something that will be brought up in the next meeting we have. The radiographer report is very basic, it just says reduced white matter bulk it does suggest there is moderate ventricular and sulcal prominence that is non specific and had no specific features demonstrated. It does state no signs of Hydrocephalus, her Hydrocephalus was the external type (which is better) often it resolves itself by two years old and thankfully it has. I think from reading, the moderate prominence is typical of External Hydrocephalus so I’m not too concerned about this sentence but we will see what the Neurosurgeon has to say in February.
I definitely went to bed that night with a full brain and with a head that felt like it probably had too much input and not enough output. When I woke up things I had read just clicked together in a way that didn’t the night before.

You just never think that you’ll be looking at your own child from the inside out, I truly hope you never are.

Being Mum Lifestyle Parenting Weekly Update

Twenty one months old and a whirlwind of a week

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.



Being Mum Featured Lifestyle Parenting Travel Weekly Update

Twenty Months – “Walking in a winter wonderland…”

Twenty months old, twenty. I guess we stop counting in months soon? Maybe when they reach two? To say they are only one for such a long time in which so much changes, seems silly so I understand why things still count in months. I guess if I was looking at clothes, they all seem to stop counting in months at two. Two it is then.

Sleigh Bells Ringing, Just hear those sleigh bells
ringing and jing ting tingaling too
Come on its lovely weather for
a sleigh ride together with you – Neil Diamond

We put the Christmas tree up this week, I wasn’t going to I know but looking at it every day sat out in the cold looking sorry for itself all wrapped up. Everyone else seemed to be putting their’s up and it only has to survive a couple of days without me topping up the water. Worst case scenario? The husband has to take it outside and saw an inch or two off the bottom again. Because I’m not doing it, having done it by myself while I was feeling all high and mighty during the start of the week I’ve decided that using a saw while simple involves quite a lot of physical effort and it’s definitely not for me! I did it though and I dragged it’s sorry self all the way up into the living room. Put it in it’s stand, unwrapped it, threaded all the lights myself and then decorated it. Where was little Ariella during this? She was napping, pretty good use of time in my view. My back does not agree but that’s an ongoing debate between me and it.

Taking a little rest while admiring the various hours of hard work

Taking a little rest while admiring the various hours of hard work

If you don’t have a Christmas tree stand for your real tree yet I really do recommend you spend a little more than you might normally and buy a Krinner. You can put the tree up by yourself as it has a little foot pedal and a great big water storage area.

In other news, we’ve ditched the bottle (hooray)! Ariella has slept through the whole night for quite a while but when we tried to remove the bed time bottle she was waking up in the middle of the night for milk. She definitely wasn’t waking due to hunger at this age and she didn’t really want the milk after all she wouldn’t drink it in a beaker cup. We decided to just go cold turkey, we explained to her that she was a big girl now and big girls don’t drink milk in a bottle. The first night was predictably dramatic, she had full blown tantrums, threw her arms around, threw her head back, screamed, cried, could not be comforted. We kept going in to reassure her and eventually she wore herself out when her efforts did not bring us running to her room with bottle in hand.

The second night, it was like a switch had flicked and she no longer woke for milk. Just a little whimper then soothed herself back to sleep. Third night in she didn’t wake at all, I did go have to go in and put the blankets over her again as she really loves to move around at night. But other than that she was totally asleep, I had no idea we would only be in for one night of tantrums. It feels really too good to be true!

We had our first hydrotherapy session on Wednesday and I had no idea what to expect, although Ariella did attend swimming lessons for many months I had never taken her myself. I also wasn’t sure exactly how hydrotherapy would be different to normal swimming, but from what I can tell the pool is warmer but so far most of the swimming exercises are on par with the likes of Waterbabies. Naturally the amount of children attending is a much smaller group, just three but this gave the two therapists plenty of one to one time to help out with the exercises. Ariella really enjoyed herself and spent most of the time laughing, It reminded me to book up some regular swim classes again as she really does enjoy the water (we stopped when we moved). One big difference as I said was the temperature which is comparable to being in a hot tub, so rather warm! Ariella has never liked a cold pool so this was perfect for her, for me I can’t say It bothered me too much but I do tend to have quite a good tolerance for warm water.

At our last physiotherapist session Ariella was given some orthopaedic footwear (Piedro) to aid her recently diagnosed hyper mobility, hyper mobility is in basic terms over flexible joints. We decided this week to put them on her routinely, so she now wears them from waking until bed time and this has really improved her walking hugely. I’ll definitely be looking at the Piedro brand for her next pair of shoes, they also do sandals so I’ll look to add those to our holiday list. The pricing of the footwear is greatly inflated but the extra support really helps gain confidence in the basic structure of the foot. Even when we take the boots off now she seems much more stable, so I’m sure the specifically designed footwear is having a large impact.

Watching Tv in new boots

Standing practice

This week has been a real run up to festivities for us, we had plans to attend a glitzy red carpet affair on the weekend and then continued that with a long weekend spa break. Both were exceptionally well timed, fun, relaxing and I think Ariella enjoyed spending a few days with her grandparents who offered up their babysitting service for the red carpet affair before heading into the Cotswolds. We greeted them at the door with a vomit soaked toddler, vomit covered mum and the external pieces of the car seat in hand. Everything was sponged down or washed, just in time for her second go hours later at which point we decided she was either car sick or unwell. As days past it was clear she had some kind of vomit bug given the car seat was covered once more (and currently sitting in the washing machine for a good deep clean).

Red carpet evening, child free!

Red carpet evening, child free!


Next in line was Calcot Manor & Spa in the Cotswolds, one of our favourite places to relax. They have an onsite creche which you can use included in the room rate when staying in the family rooms alongside the baby listening services. The Creche is such good fun, the staff are always very reassuring and all lovely. As well as this they have the most awesome spa with a blissful outdoor hot tub and top of the line treatments. We used to visit often before children and it’s remained consistently excellent throughout the years with a unique balance between catering for the couple market and also families. This is such difficult line to walk on! The food is top quality, the spa excellent, the family rooms lack nothing – they are as comfortable and accommodating as our own home. Perfect!

Calcot Manor

Christmas Tree outside

On this occasion we decided to go for a family suite as Ariella tends to get disturbed now when we come in and out of rooms. It’s not always an option but she did sleep a full 12 hours as normal here, the rooms are beautiful whether you have older children or younger. They are accommodated with tv’s, games, books and also the younger children have all the extras you might usually need to bring (steriliser, washing up liquid, nappy bin). Family Suite

The first evening we dine with Ariella at the children’s high tea then once she was asleep enjoyed some superb cocktails in the beautiful decorated lounge area with some of our close friends, with roaring fires and Christmas trees scattered throughout it was very relaxing. Just what we needed to unwind and prepare for the rest of our stay (as well as the treatments had scheduled at the spa). The following day we made use of the creche, dropped Ariella off and headed to the spa where we enjoyed spectacular massages – I opted for my usual hot stone but a much longer duration this time. We managed to change or creche booking to a little earlier so that we could enjoy the spa and the hot tub before our treatments, as we weren’t sure if we wanted to take Ariella swimming. The swimming times for children is quite a narrow window but as it turned out, Ariella wasn’t feeling very well anyway.

Cocktails with friends

Yummy lunch in the conservatory restaurant

Yummy lunch in the conservatory restaurant

The following evening we had a baby sitter booked in, the creche at Calcot offer baby sitting in the evenings which is really a treat. So that left us free to dine with more friends in the fine dining Conservatory, exceptional food and wine is on offer. It was so great to have a huge amount of time to ourselves, child free and I feel very much ready for Christmas now!



Being Mum

Catching up to speed

I should probably catch you up to speed, or Ariella – in this case both fit. Roughly two weeks ago (who am I kidding? It was seventeen days to be precise) Ariella had another progress review by her new paediatrician, moving around has certainly given us plenty of new faces to meet and greet! I think her last review would have been around six months ago when she was one while we were living in  Richmond, six months is a long time when you are little.

Ah wait, for anyone who doesn’t know these reviews usually consist of physical wellbeing checks, developmental questions about gross motor skills and games testing and scoring. The children have a bunch of activities to try and do like removing an object wrapped in a cloth (object permanence), retrieving a cube that can only be removed by tipping the box, stacking cubes, picking up small pieces of paper and sorting very simple shape puzzles. The twelve month one usually has mothers in a state of worry as often you’re provided a sheet of tasks which you mark yourself to say how well they can and cannot do something.

As I mentioned in my previous post we’ve always had a level of delay from holding her head at three months(three weeks) to sitting (two months), to crawling and still walking which is pending. But it’s always been up until this most recent review a gross motor delay. I remember attending the first review at around eight week? The tasks and hoops to jump are much more physical, usually done by your doctor. They check for physical tone – can the baby hold its head when lifted up, amongst many other things which have since escaped me. Ariella had low tone and a jump in head circumference, that’s the first time she was flagged.

The doctor said “I’d like her to have an ultrasound on her head just to check”. I asked why, what would possibly be highlighted and that’s when the concern of extra fluid around the brain was raised.

They give you this look at that point, have you ever seen a doctors look? When they don’t want to worry you but feel definitely some action needs to be done. Lots of reassurances too, “she probably just has a larger head, some children do”.
We paid privately because I’m too impatient for her ultrasound scan, the wait on the NHS was rather long and after spending some time on Google it’s easy to start imaging the worst (shunts/major surgery and the like to drain the fluid off).

I wandered to that appointment rather naively alone, Ariella strapped to my front in her Stokke MyCarrier. It was an unusually hot day in Richmond and I really had expected the scan to be routine – everything’s okay! We were seen by a lovely paedtrician, in a lovely practice who promptly after asking all the usual questions/physical checks set straight to doing the ultrasound in the same room. I can’t say I really understood the pictures in front of me at the time, now I wish I had paid more attention.

It was only towards the end that he confirmed there appeared to be more fluid around her brain than normal but only externally, not in the ventricles which (we found out later from neurology) means it’s likely to  only need monitoring and not a shunt put in place. As well as this, he said he needed to review the scans in the evening because there seemed to be some abnormally with her corpus callosum but he wanted to check in more detail but that if it was the case she would likely have some developmental delays, later that evening we received the email with the referral to neurology and the findings of the scan written in better detail.

You really only need to know about two phrases “external hydrocephalus” and suspected Dysgenesis of the corpus callosum. Both of which I googled a lot that evening, with such a wide range of outcomes the future suddenly looked very uncertain. From this point we saw a neurosurgeon in Harley Street and later moved our care back to the NHS with the same consultant. We attending Great Ormond Street every now and then depending on her progress and head measurements.

Often I would attend the development reviews and think “never mind she does this normally at home, just an off day”. But this time I had already noticed a sharp difference between Ariella and her peers, the way she played with toys.

Her eighteen months review score put her at ten months old (eight months delayed) on everything except speech and communication, after this day I decided I needed to up my game.

I set about creating an activity planner to be sure that during the week we were covering all our bases, it’s not kept to 100%. If life gets in the way or we have a play date then certain activities get missed, but we are seeing progress. It’s great to know that whatever happens, even if it turns out she is just a natural late developer we’ve really done the best we can for her.

I went back to basics, Ariella has always had access to a variety of toys to which she could have learnt about object permenance, stacking, sorting, but she would mainly just throw the toys around. Going back to basics has been great for her, she is now able to complete a simple shape puzzle, tip items out of other items, stack supported objects (we still have some way to go with stacking wooden blocks!).

We’ve been working on the concept of smaller and bigger. I can highly recommmend these Montessori shape puzzles which I purchased from Absorbent minds.

I did tell you’ve we’ve been having lots of fun! The living room has become an obstacle course where we encourage her to stand up and retrieve objects. She is really coming on fast with her gross motor skills this last week, since the appointment she now stands up in her cot, walks holding one hand at times, cruises furniture easily. It’s hard to explain how difficult these feats have been for Ariella, only when you feel the tone of a child do you get a sense of the difference. She’s always been much less stable, eventually something clicks and she will be able to auto balance herself. For example she has been sitting for a long time, she has mastered sitting dull and if I try and give her a quick nudge while sitting there is that resistance that should be there for standing, whenever I happen to be holding someone else’s child it’s very obvious to me that her tone is much lower. Her most recent physio therapy session report confirmed this, while not abnormal (thankfully!) her tone is on the low side of normal.

To cover our creative bases and encourage drawing and mark making, I also purchased an Aqua doodle which is a no mess alternative, at this point she was still putting everything into her mouth. Crayons of which we have some beautiful stockmar ones made out of beeswax she would rather taste than use. I feel this is starting to change now so am hoping we will be able to start drawing more soon with something other than water!Up until now I’ve always tried to give Ariella choice, her toys are generally on a level which she can reach to decide what she would like to play with. I’m a big fan of the Montessori approach to learning, it fitted nicely with our weaning choices and the independent nature of Ariella herself. But to not try and actively focus her mind at this point would be a failing on my part so I’ve had to put that slightly to the side in the hope that I can gently persuade her to do certain tasks.

Repeativeness seems to be key, which would line up with her suspected diagnosis (still unconfirmed). Playing with her environment doesn’t always seem to come naturally to her, unless it’s music or speech. She adores her weekly music class and instruments at home, she is a major fan in classical music and has an empathic understanding that is im told beyond her years.

I shared this picture recently on my personal Facebook of her crying to a violin playing on the television. She really has a lovely soul, her ability to understand and communicate helps immensely with the current challenges as we can stop her from becoming frustrated with reasoning.

She really is a joyful character, she is very funny and says and does the most adorable things. I hope I’ve given you a little insight into our new action plan and look forward to sharing how we are getting on!