We had Violet's new Scleral Shell colour matched this morning. She was a good girl and sat patiently on my lap while her Ocularist Jim Morphett painted away.
He still has to seal it and we go back 23rd July to pick it up.
Decided I would take some photos of him painting her shell today and post them on the blog, with his permission of course! He is just so good at his job!
Received Violet's MRI Report in the mail today.
The report is very detailed and of course all mostly medical terminology you would need a degree for to make sense of it. Although there were alot of things reported on, the main areas of interest in this recent MRI Report are:
Pineal Cyst has now grown to 1cm in size (at birth measured 4mm)
On Wednesday, we had our individual appointment at The Spastic Centre with Violet's OT, Physio and Speech Pathologist.
As posted in one of my April posts, Violet had a speech assessment using the Reynell Developmental Language Scale and we finally got the results from this assessment.
Her language is doing very well, considering it was only a little while ago she started putting words together. Although her expressive language including sentence structure is still at a 2 year olds level. She also has difficulty identifying some objects and their names and at times has difficulty finding words to express herself.
She also noted that Violet's speech displays a mixed-resonance speech quality and after her assessment, the speech therapist examined her mouth to check her palate. As we already know Violet has massive tonsils and adenoids, but the speechie said she saw signs of a palatal abnormality, which she believes could be sub-mucosol cleft.
While I was in hospital last week, we received Violet's scleral shell to trial before we have it painted. It went very well and has now been given back to her Ocularist to be built up and painted at the end of June.
Well, if one good thing can come of me and my impending brain surgery, it's this!
As Pre-School applications for next year have to be put in by July, I thought to myself this would be something I really needed to organise before my surgery. Not only to make sure she got a placement but that I had been able to visit a few centres to make a proper decision.
We went and visited a couple of Pre-Schools last week, some of which as soon as I walked into made me feel very uneasy. Some of them appeared to have no structure or organisation at all!
But then I found one that I really felt good about! They had no idea I was visiting, so none of it could have possibly been orchestrated.
Not only did the centre look safe for Violet, it has a great structured program and as soon as we walked in we saw the children sitting in the room intently listening to a story being read. The staff were very informative and friendly and after explaining Violet's needs to them they were more than happy to look into organising her funding straight away! I took an application and thought to myself even though I was extremely happy with what I had seen, I still need some thinking time before putting the application in.
Later that night I filled it in and the next day I took it back into the Pre-School. I have decided on 2 days per week. They will be contacting me in September for an offer of placement for Violet. They will then book an appointment with the Director to organise Violet's Health Care Plan.
As I left the centre, I felt like a huge weight had been lifted from my shoulders! Something I had been dreading and even putting off for so long, I had finally done it and felt very comfortable with my choice.
Today Violet had her MRI under General Anesthetic and she was such a good girl! It never is easy to see her have a GA but she and I coped very well.
She also had to be intubated for the GA, so her throat is still very tender from having that done.
It was to investigate her Epilepsy and Vascular Malformations further. It also gave the opportunity to have a good look at how her Shunt is draining her excess CSF from her ventricles.
For those of you that may not know, Violet has Unilateral Hydrocephalus. So her left Ventricle is severely enlarged and even though she is viewed as Unilateral Hydro, her right ventricle has always been a little enlarged due to her having the hydro on the left.
Today the scans show some great results with her right ventricle, it's basically back to normal from what I can see of it. Her left is getting better slowly but still a long way to go yet. Her Neurosurgeon has always said her left ventricle will never completely get down to normal size, as it was so severe.
Here are a few of the scan images from her MRI at birth and also from today's MRI to compare:
← MRI from birth
MRI @ 3.5 years old →
← MRI from birth
MRI @ 3.5 years old →
← MRI @ 3.5 years old, a great scan showing her Shunt
