Neurology and more updates…

We had a fairly good visit with Thomas’ Pediatric Neurologist during the week. Joe and I always ensure we go there prepared with questions because the appointment process goes really fast and you otherwise end up leaving annoyed because you forgot to ask something. Usually you also leave the appointment with fresh questions too. We won’t see his neurologist for another 2 months so the emphasis on being prepared is key!

So the good news is that Thomas has not had any worrying signs of infantile spasms but that if they do relapse we will go straight back on to the steroid treatment because Thomas had an initially positive response to this treatment. We will not need to have him re-admitted or require an EEG as they can do a visual clinical diagnosis. Yay! EEG’s are stressful! On that note, Thomas has a follow up EEG coming up to check for the specific hypsarrhythmia wave pattern indicative of Infantile Spasms. Boo hoo!

Thomas is still awaiting results as to whether he has another rare seizure disorder that the neurologist wants to check on. His blood results show that he is genetically fine which is a big relief for Joe and I. This also tells us that Thomas’ brain bleed was not of congenital origin. 

We were able to see a more up to date MRI scan of Thomas’ brain. It showed us that his brain injury was moderate to severe and that he will be globally delayed in all areas. I hope to get copies of this that I can share but in general terms there is a whole lot of white matter missing and replaced with fluid. The white matter that is missing is all on the outside surrounding the brain but also within the inner part of the brain where his ventricles are located which has left him with enlarged ventricles with bleeding still resolving. I’ve posted a pic below so that if you can imagine that part that is missing is exactly where the visual cortex is as well as part of his motor cortex. This explains why Thomas has a severe visual impairment as well as cerebral palsy. The neurologist said that when Thomas is about 2 years old we may have a better idea of what his capabilities will be in terms of development. For now, we will just wait and see how he develops. 

 

After his appointment he had quite a bit of blood taken for more tests. As you can imagine, Thomas was very traumatised by this experience. For any young bubba or child this is distressing I’m sure but double distressing for Thomas because of his lack of vision and an inability to reason with what is being done to him. I gave him loads of cuddles and he settled once we were out of there. Unfortunately, he had an unsettled night and we stayed home the next day which meant no BLENNZ playgroup for the day. So sad to miss these sessions as they are very awesome for Thomas and I. Thomas was still quite grizzly for the most part of Friday so I know it was the right decision to keep him home for the day. By Saturday, Thomas was feeling much better.

Here are some fabulous pics of Thomas continuing to make great progress with his strength during tummy time. In the most recent weeks, he is starting to show an awareness of his environment such as toys or people. He is trying really hard to get anything into his mouth and has learned ways to do this by shuffling around on his back. He does not have the strength yet to get his hands to his mouth or bring an item to his mouth so we help him out here as much as we can. 

Thomas patting the cat.

A very strong man!

Very smart how he moved sideways! He loves the keys on the side.

Thomas loves to suck on the cats ears!

 

 

 

Sensory what?!

So today I’m going to write a post about Thomas’ sensory room.

It is often something that we get asked about, or generally it is, “what is it?” or “what does it do?”. I would definitely ask the same questions because I’d never heard of one until I started looking into CVI and came across it myself. Before we go any further I think it’ll help to have a picture to refer to! The sensory room is provided by BLENNZ.

As you can see, it’s a pretty neat place for Thomas to explore in. In fact, it is HIS place. When he is in his sensory room, it is his time to explore independently. We do not interact with him while he is in there because it is his opportunity to focus on developing his awareness of cause and effect. This means that he can learn that he / objects within the sensory room are responsible for producing certain sounds. The sensory room is especially designed to suit Thomas’ individual learning needs.

Within his sensory room there is a deliberated contrast of specific items on each side. He has a plastic chain vs a cold metal chain. There are bright shiny pom poms (his favourites!), smooth sides vs fake grass. High contrast, bright colours and shiny materials are effective for catching Thomas’ attention. As well as texture/feel, sound is an important aspect. Thomas can listen to himself chatter or the metal clang, the clinking of beads, or the jingling bright balls. Within this space, he can also develop an awareness of object permanence whereby all objects remain the same for a lengthy period of time. Objects are dangled in specific areas so that his knee or foot will purposefully hit certain objects. The idea here is to help him become aware of his body and what it can do.

The benefits – LOADS!

Ever since Thomas began using his sensory room from about 5 months (he’s 7 1/2 months now), I noticed some positive changes immediately. He started to move his head more as though he was scoping out his environment and using purposeful looking. He can turn his head to both sides now. His hands have relaxed and opened up more. They were almost always in tight fists. He generally moves his body a bit more like kicking his legs about. To begin with, Thomas used his sensory room once a day for maybe 5-10 minutes because that is as much as he could cope with. He was especially anxious and frightened by the objects and it took him a good few weeks to adjust and develop confidence. Now, well, he is a very boisterous, playful and confident boy. He will spend 3/4 of an hour or less up to 4 – 5 times a day. He absolutely loves it. I am so thankful that I can see Thomas play and interact with his environment. I was told that I can pop him in there and go about jobs etc but to be honest I’m too distracted watching him!

What can he see?

This is a question we often get asked. I often struggle to answer this question because I really don’t know. At the moment he has pretty low vision but he’s not blind. However, if he is tired or sick he will not use his vision as a primary source at all. Whenever Joe or I are holding Thomas, people often ask if he’s asleep. Quite the opposite! In fact he’s very alert but Thomas will stay very still and put on what I like to call his ‘listening face’ while he tunes into his environment. Often times he will poke his tongue out to taste or maybe feel the room. Sounds a bit odd but it’s super cute! Thomas uses his peripheral visual field a lot as well as looking downwards. This is also why he sometimes looks like he’s asleep. He tricks me all the time! Thomas does not fixate or appear to follow objects just yet but what he can do is quickly glance at something bright or shiny and then he looks away. I think that it is because it is a lot to process all at once. Thomas does look about the room but he’ll always be in a constant motion when doing so.

Here is a quote that sums up what it’s like for a child with CVI using their vision;”When a child with CVI needs to control his head, use his vision, and perform fine motor tasks, the effort can be compared to a neurologically intact adult learning to knit while walking a tightrope.”(Blind Babies Foundation) That’s pretty hard work then!

Check out Thomas’ Facebook page, Minding Thomas, to see a video of him in his sensory room.