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!
