Kaiden and the first check-up

We had Kaiden’s 4 month check-up today and everything went very well indeed.
Kai had been doing fantastically well, and even though he lost all of the his words after the surgery, he has started brining it all back together.
p.s. This post was written WAY after it should have been…

We have been thinking about how to quantify Kaiden’s progress and can only think to do it using an age that we think he is currently at. We think he is about a year behind where he should be and there is a lot of hospital appointments going forward.

Figure: Kaiden, Evagelina and Truffle at the World Bagpiping Championships
Kai is not even dreaming of walking properly yet, but he is starting to do more. Specifically he has been trying to shuffle up and down the furniture. He does have physiotherapist appointments, but they are more about training Jadie on how to do the physiotherapy herself and monitoring his progress than actually doing anything with Kai.
Although this is disappointing, it does mean that he gets way more one-on-one care as Jadie is always there.
With the bombshell that we will be moving to the USA still fresh we wanted to get as many appointments out of the way as we could before we go. It may have taken us a long time to figure out the US system and many of them we due just before we went. So we booked a many as we could to see the Neurologist and the Endocrinologist.
Because Kaiden is now a LOT less lethargic than he was when  we had the first MRI, he needed to be under a general Anaesthetic. As we have had so much trouble getting blood out of Kaiden in the past we wanted to make this as easy as possible we got the bloods for the Endocrinology Department  tests taken at the same time as the ones the Neurosurgery Department was taking while he was under for the MRI.
Well, getting Kaiden to sleep was one of the most brutal experiences so far. It was very traumatic for him and us. But the results were fantastic.
Figure: left - Pre-operation;Right -  post operation
You can see that the new scan is much better than the old one.
Figure: left - Pre-operation;Right - post operation
You should be able to see that his brains are a lot less squished now which means that, although it is difficult to see, there are a lot more ridges.
Figure: This time we have the full scans
Because we are heading to the USA we will be needing the full history and Scans to take with us. So I have better pictures Smile
Jennifer Brown told us that although Kaiden had the worst case of Hydrocephalus that she had ever seen that he had made exceptional progress and that she had no problems saying that there would be no difference between Kaiden and another child in a few years time.
She even told us that from the day she saw his scans she wanted to operate immediately, but that she did not have the capacity. If you remember we had to wait 4 weeks between the Scan results and meeting her, and another 2 weeks to operate. This is our one and only problem with the care provided by the NHS…. there is no slack.
Wish us luck in the US…


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