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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.

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