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.

Spoonfuls of sugar

Drugs, drugs, drugs!

At first, the thought of taking Thomas home and being responsible for administering his medications was quite scary. He had spent a total of 7 weeks in NICU and I’d become used to the idea of NICU nurses taking care of this side of things. I was responsible for feeding him and CARES and that was pretty much it. So I was thankful when they weaned him off his anti convulsant while he was in NICU so that he could be closely monitored in a safe environment. The idea of weaning him off it at home was frightening so one less drug was a relief.

This is just the morning lot of meds alone!

Fast forward a few months and now preparing and administering drugs is a regular part of our routine. In fact, that’s usually how I start my mornings. Thomas wakes for his morning feed, nappy change and medications. He’s usually very good at taking his meds but as he progresses he is showing a distinct awareness of which ones he prefers (the sweet tasting ones of course!) and the ones he does not prefer whatsoever (mashed up pills mixed with water or expressed milk). We are now starting to see him try to spit it or gag it. 

Medication is very much a big part of our daily routine with me trying to ensure that it is prepared and administered routinely.I have become so used to it and it isn’t until a new drug is introduced that I get a little anxious. The anxiety for me is ensuring I give the correct amount and whether there are going to be side effects or interactions with other drugs. Side effects are an unfortunate thing but I’ve found that sometimes you have very little choice. 

Most recently, we have delved into using a range of sedatives such as Midazolam, Melatonin (blimey expensive non-subsidised!) and Chloral Hydrate. These, to me, are the scariest because, well, they sedate my wee man. Midazolam is now only used when Thomas has a seizure (infantile spasm seizure) lasting longer than 10 minutes. Melatonin was used to help Thomas drift off to sleep due to the sleep deprivation side effect of the Prednisone. Unfortunately, he would sleep from 20 minutes to 2 hours so it was not so good at ensuring Thomas remained asleep for an appropriate length of time so we moved onto something much, much stronger.Enter Chloral Hydrate. He needed to be hospitalised while they trialed dosage amounts and to ensure that he was monitored as Chloral Hydrate can slow the breathing down a little. Thomas responded well to the sedative and so we were able to take a little home to see him through for the week. Unfortunately, you can build an immunity to it so that story ended quickly. Thankfully, Thomas finished the Prednisone treatment and is now sleeping much better as you already know as per my last post. 🙂

Big picture wise, for us, at the moment, it is about managing Thomas’ seizures so that they do not cause him discomfort, anxiety or further cognitive delays/regressions. We want to make sure Thomas is comfortable and happy. 

Thomas working hard.

Appointments, appointments, and more appointments…

Whoa what a busy week for Thomas!

He has had a visit from his vision therapist from BLENNZ as well as the Home Care nurse. Thomas is absolutely loving his sensory box at the moment. He’s especially boisterous and loves to thrash and bang everything about the place. He’s figured out that there are objects on the side of the box and is trying to work his body over there. Thomas is also trying to get the hanging beads into his mouth.

Taikura Trust came on Tuesday to speak with us about respite which we are eligible for. We just need to decide what we want and go from there. I’ve posted the link of Taikura Trust if you’re wanting to know more about it. It is a charitable trust that is a provider of needs assessment and service coordination for people under the age of 65 years.

http://www.taikura.org.nz/

Thomas is not happy about immunosuppression!

BIG NEWS!

Thomas had his last dose of prednisone on Monday! Goodbye Prednisone and stay away! We have not seen any spasms now for the last 2 weeks. Thomas will still have immune suppression for at least 6 months. 😦 He will also need another repeat EEG and visit with the pediatric neurologist. We have been advised that Thomas is still in ‘danger zone’ and could have a relapse of infantile spasms up until 5-6 years of age. Bit of a gutter really…

 

We had a visit to Waitakere Hospital to ACCESS Clinic for Thomas to be assessed for a postural support system while sleeping. While we were there they assessed him for seating support systems too. The main focus is to ensure that his pelvis and hips are sitting and moving as they should be. At the moment, they are not.

Thomas had a tough time on the Prednisone which left him with all sorts of side effects, one of which included insomnia in which he required hospitalisation for most recently. Since he has stopped taking the prednisone, he is slowly getting back into his sleeping routine which is a relief. He has always been a good sleeper until recently so we hope that he returns back to his old sleeping habits.

Thomas doing the sleeping thing pretty well.

Milestones

A big hearty thank you to everyone who has checked out my blog and shared it with others. Feel free to follow my blog via email or share the link with others.

As you will notice, it is still very much a work in progress as I work through each page I work through parts of the journey. 

So…milestones. Milestones are a very big deal right? Anyone who has a child with special needs will know that milestones can be a sensitive topic because often milestones are either not achieved at all or you spend your time thinking when will my child achieve “insert milestone here”? or will my child ever achieve said milestone? You get to the point where you actually realise that it is probably not a healthy thing to think about anymore and you grieve it and eventually let it go. Sometimes those thoughts resurface but you shake it off and carry on.

Today I will share with you a recently achieved milestone during the week. 

We haven’t got it on camera yet but we’re waiting. I have witnesses too which helps because sometimes you think, “nah, that wasn’t genuine.” So when someone else hears/sees it, it’s the real deal. 

Giggles! Thomas was feeding in the lounge and randomly giggled. A proper little giggle. I couldn’t believe my ears. (and if you know me you know I am poorly with the hearing side of things hah!) My mother in law was sitting across from me and we looked at each other in total shock. What did we just hear? And then he did it again. Since then, he is randomly giggling here and there. Not sure what at but it’s the most beautiful, yummiest sound ever. At 5 months, Thomas began smiling and cooing. 7 months, giggling! 

As a treat, a most recent pic of Thomas smiling.

You’re welcome.

You know you’re a parent of a child with special needs when…

I had to make a post of this because the inspiration came from a recent Home Care Nurse appointment and really just to get these out of my system. I just need to dump it and stop thinking about it especially when I should be getting some decent broken sleep. Here goes…oh and feel free to add to the list in the comment section. You know you’re a parent of a child with special needs when…

• You don’t need to make an appointment to see your child’s GP to get a medicine, instead you just phone and speak to the nurse and they fire it through to the closest pharmacy. This one applies if you do it regularly/often.
• When you walk into a pharmacy and they know who you are and refer to you as “insert child’s name here” dad/mum.
• When the pharmacy make regular complimentary phone-calls to let you know a prescription is ready and do you need anything else?
• When they ring you as above because when you dropped off the prescription/had it faxed through, they need ample time to prepare the complicated array of medications.
• You get super excited when the Home Care Nurse brings you a paper bag full of good quality oral syringes. You may even proclaim that it feels like Christmas. Sad but true.
• You have a diary to record appointments for you, I mean your child. And by appointments, I mean medical appointments.
• You start collecting hospital discharge summaries.
• You spend time away from home but not for a holiday but a hospital stay here and there.
• You go hour by hour, not day by day, or week by week.
• You can’t list all your child’s medication on one hand anymore.
• You can’t list all your child’s medication on two hands anymore.
• People ask how your child is doing and it’s easier to just say “he’s happy”. Because, really, that’s the only thing that matters to me and any parent I’m sure.
• You wait for the ‘okay’ from the community dietitian before you begin introducing things like solids.
• You return to hospital and the nurse says something along the line of, “I knew you’d be back” or “oh no, Thomas, what’s wrong now?”
• You make sure you have spare coinage so you can buy from the vending machine, should you be in hospital anytime in the near future.
• You get excited when the, “insert specialists name here”, contacts you on their mobile and you have their number saved on your phone!
• Your child gets more mail than you and your husband combined. The letter is usually addressed to ‘caregiver/parents of -insert child’s name here-‘.

Okay, I’m going to leave it there. I could probably carry on for a bit but I think I’ve had a good ‘blah’ and got it out of my system. I think!

Solids Gah!

My first official post has to begin with something extra ordinary. Poop!

I have had so much fun being able to re-introduce solids. We held off the solids until a SLT (Speech Language Therapist) confirmed that Thomas has a healthy swallow. With the interruption of hospital stays (twice in two weeks!!!) we are attempting to re-introduce solids again.

I must say…I am so happy that Thomas is able to feed well. I know that this is something that is a big positive in our world. I am excited to explore this with Thomas.

Selections! So many different flavours and combinations of flavours. I’m going to have a lot of fun. I bought a whole lot of different foods to play with. 

We started with Orchid Apples. He liked it. Success! He’s a hungry boy too. Next, Bananas and Mangoes. Whoop! He loved this one! My mum said to watch out for his poop with those bananas. I thought, no worries. Poos smoos.

Midnight. Awoken. Thomas has done a big poo. Okay no worries. Sorted.

Next night. 2am. Awoken. Joe got up this time. Came back swiftly asking for help please. Diligently (I didn’t argue, I swear) I followed. Yep, another poo! WHAT!?

There appears to be a pattern emerging here. My little man appears to be forming a regular pooping schedule that I have had the pleasure of not enduring. When Thomas began taking levetiracetam for his seizures his number 2’s appeared once every several days to two weeks. 

Solids. Yep. Much Fun. Luckily the below picture does not apply….for now.