Handy Websites

Welcome! This cloudy, rain pending morning I have changed two poopy naps followed by eventually lighting the fire and polishing off a coffee.

I have been updating the Resources page to include more useful websites I often visit. I only add websites to this page that I truly believe are worth spending time exploring. Check it out >>>>>> Useful Resources

These days I find it tricky with Thomas not napping during the day. He dropped his day naps shortly after turning 2 many moons ago. I find this surprising considering he has had significant brain damage. (Grade III brain bleed) I had it in my head that he would require naps to re-fire his brain from over-stimulation or ‘neuro-fatigue’. It has been the opposite for us. Thomas requires lots more stimulation whether it be auditory, kinaesthetic or oral. Yes, he still loves to bring things to his mouth! Lots of nerve endings getting some TLC! Personally, I don’t mind this because it encourages him to use his arms and hands more which is great physical therapy in itself. For a long time there, Thomas wasn’t able to get his hands near his face and so it is exciting that he is starting to get better at moving his hands towards his face. This encourages him to explore his face too.

During the day Thomas will enjoy listening to nursery rhymes or stories on his iPad. We have to encourage different positioning throughout the day so he will either spend time on the floor, in his gravity chair, wheelchair or standing frame.

He attends kindy three times a week, 2.5 hours a day. This is as much funding that the MOE (Ministry of Education) will give us even though I have stated I want him to attend more. Getting a third session required getting more people involved to make it happen. So although there is such a thing as 20 hours Free ECE, Thomas does not get anywhere near this amount because he requires a support worker (Teacher Aide) additional to this with him at all times and this is the funding that the MOE is not willing to provide on a needs based situation. So this means that we cannot take advantage of the full 20 hours. I am beyond frustrated with this.

Is this discrimination you wonder? Yes, it is. Is this happening to other children around NZ? Yes, it is. 

Thomas also attends weekly hydrotherapy swimming lessons in Whangarei. This is the highlight every week for him. He continues to improve his swimming skills each time we attend. Thomas is a member of the Cerebral Palsy Society and they provide vouchers for physical therapy. This is what we use our vouchers for.

Thomas is wearing his fantastic new flotation device from Water Gear. It is the safest device that we have come across with the most even distribution of foam support. Using a life jacket, we found that it was safe but too much foam was situated around the trunk area that made it difficult for him to remain vertical in the water. The waterway babies neck ring was great up until last year. We found that as Thomas became more and more physical, he would dunk his head in the water taking in the water. This became a safety concern so we went hunting for a more appropriate flotation device which resulted in the above.

That’s it from me today.

Lots of updates…

It’s been pretty busy in our household lately. There are so many different focuses at the moment for Thomas.

Everyday is fairly routine but within that day there are lots of different things we need to work on. So many in fact that not everything gets seen to and I feel the pressure often due to this. I know that I cannot achieve everything I set out to achieve everyday but I like to feel that I’d like to try. If you catch me after a bad night with Thomas, those are especially harder days. 

You see, most children develop and achieve certain milestones and move onto something else. With Thomas, I’ve learnt pretty abruptly to leave all those expectations behind. I stopped the plunket visits early on and reading typical child development books because none of that could apply to our situation anymore. I was living with no expectations except to just see how things develop. For the most part of a year, it was extremely tough watching Thomas having seizures, develop dystonia, struggle with feeding, reflux, eczema, and the crying. I’m seen a lot of that so much so that I’m de sensitised to it. I don’t freak out about seizures, unusual spasms or aggressive crying because it has become a norm for us. Don’t get me wrong, seeing all of that does upset me and make me feel powerless to help. But I have learnt that freaking out does not help the situation at the time. It is best to focus on comforting Thomas. 

I get by most days by prioritising what needs to be done and what can wait another day. Like washing, that can definitely wait!

What I try to focus on with Thomas has often been the same for many months because Thomas needs more time to work on certain things. I’ll list those below with how each is going.

• We have been working on using his new cause and effect switches from the Speech Language Therapist. He seems to have clicked onto this idea pretty quickly. He will press it and either listen for it or respond.
• His sensory room that gives him independent playtime. He enjoys this but does not spend much time in it like he used to. He seems to be getting bored being on his back.
• He has his standing frame to practice bearing weight on his legs and hips. Thomas is still a little weary and unsure during this. There is a lot of crying and fussing as he gets used to new things. He does seem to want to push on his legs and lift his head more which is pleasing.
• A big focus is on feeding and keeping a track of how many mls water, formula, and solids and ensuring they are given timely. Thoma has been eating chunkier solids for about a week now which is an amazing development for him. He used to gag on chunkier foods but is now starting to chew a little first before swallowing. His cough reflex is strong so if food gets stuck, he seems to be able to clear it independently.
• Working on cup feeding to encourage more taken from the cup instead of through the tube. He seems to tolerate more when he is thirsty and more alert. Usually he can tolerate anywhere from 20 – 60mls. He prefers water and nothing else. We have tried a few different liquids but he always enjoys the water. So refreshing!
• I try to get Thomas on his tummy often during the day. He is enjoying being off his back and able to get his mouth to his hands easier this way.
• Assisted rolling, side lying, sitting with bearing weight on arms and hands, and bringing hands midline continue to be a therapy focus. Depending on how Thomas is feeling, we can get varying results however in general I believe that Thomas is developing an awareness of what he should be doing and is trying to attempt certain physical maneuvers independently like trying to roll and swing his hips over. His head control is improving. He wants to lift his head and hold it up for longer periods and at times look around the room. He seems to be opening his hands more. His right side in general is tighter, therefore weaker than the left side. 
• Vision therapy such as assisted play with me. We use certain IPad apps, playing with light up toys or bright coloured toys. I have noticed him using his peripherals a lot to try and look out of the left side at people, or things. He is starting to show that he can hold his focus for maybe 2 seconds or follow an item but this fluctuates depending on how alert he is.
• I have posted photos of Thomas on his Facebook page where he is often getting stuck in uncomfortable positions in his cot. To address this we have been using the Safe T Sleep to strap him safely in the middle of the cot. He transitioned straight away with no issues. The only problem now is that we only have 1 because they are not cheap and he’s been out of it for a day or so while it dries from a wash. Bit of a hassle but not the end of the world!
• Thomas is still attending regular twice weekly Conductive Education sessions. These are going really well. He is still receiving individual sessions as these best address his needs. 
• No news on the Gastromy surgery. We are still waiting! Patiently…
• Another focus that I am trying to be consistent with but sometimes let it slip is working on communication with Thomas. Things such as Objects of Reference that are small physical items or words I use repeatedly for certain situations so to help him learn associations and be prepared for certain things. At the moment it is letting him touch a nappy before a nappy change, touching a spoon before eating, or applying gentle pressure to his thighs when he is on his back to let him know he will be picked up or putting my hands under his arms and saying “up, up, up.” This way he knows he’ll be picked up. It seems to me that he is learning to remember these prompts because he will still and wait or when getting up out of a chair he will try to push himself out a little. He is also very cued in to his auditory environment. It’s not that he has super hearing. He’s just very tuned in and knows what certain sounds mean.
• Orally, Thomas continues to chat and babble away. He sometimes says words clear as and other times it is a bit harder to decipher. Words that he will say include hello, more, no more, mum, muma, love you, hello mum, no, and bang. He does not always say words functionally but he sure likes to practice them. Words he uses functionally are love you, mum, hello and more.

Thomas babbling and chatting.

http://youtu.be/ozArPSSh_jE

Thomas using the switch for the first time.

Hope you enjoyed the videos. Any questions, feel free to ask because maybe I left something out?!?!

Today in Auckland it’s raining so best to keep in doors. ☔️ 

Have a lovely day 😀

Yawn!

Been some early starts here for the last few days. Thomas has decided that he is a big boy now and he gets up early to go to work, I mean play. So this morning has been his earliest by far, having been up and ready for the world by 5am! To add to this, Thomas, the big boy he now is, has dropped one nap, now averaging one nap a day. This is more difficult a transition for us parents I believe. 

It all started with day light savings, surprise surprise, NOT! He used to sleep in till between 9 – 10am and it started with 8, 7, and here we are at 5am starts. As I sit here writing listening to some raging music, I mean nursery rhymes. I’m a cool mummy. Gotta get into Thomas’s hip music ya know, anyway, he is playing away in his sensory room talking away and bashing his items in the sensory room. I am aware that kiddos at Thomas’s age often do start getting up at appropriate, I mean ridiculously early times in the morning to officially start the day. This seems to be the norm. The difficulty lies in with a child with Thomas’s physical needs, being that he has cerebral palsy and low vision means filling the days are really tricky and all consuming. This means that Thomas is fully dependent on me to get him around. He cannot just decide he’s done playing and get up and move onto something else. It usually eventuates with him putting on a frustrated cry until he is picked up.

The other difficulty is of course, he is a big boy, a bigger boy as each day passes. I am so thankful he is gaining weight and growing, however, my back does not agree. It’s now at the point where he is not only heavier, but longer. This becomes all about finding smart ways to manoeuvre him around safely. I am finding it difficult scooping him up out of the cot and getting him in and out of the bath. Don’t get me started on getting him in the car seat! There are times, not often of course, when a foot or arm will get caught. This is because he cannot see where he is going and does not preempt moving it out of the way but also that when the offending arm or leg is caught, he does not have the strength to move it either. Tricky tricky! 

For anybody new to this journey of raising a child with similar needs, it’s handy to know these things. I get a lot out of speaking with other parents who are years ahead to learn how they operate or work with difficult scenarios. Often I hear that as the child grows, the challenges remain but change over time. Thomas has some upcoming new challenges, one such challenge is getting a GTube. His surgical consultation is coming up in May so I wonder if he will be having the surgery within months! I have been told this will make life a little easier than having the NGtube. I see it as a new challenge. Something new to learn. Something that will become a normal part of everyday life with our Thomas. Not something that I ever planned for, but I’ve learnt that you can be as prepared as you can possibly be and that life will happen in any which way it pleases. There is only so much you can control in life. Well, that’s enough philosophy from me for the morning I think!

Post coming soon on Thomas’s exciting developmental changes! 

 

Thomas loves his playtime!

http://youtu.be/Fl78V0BGJQk

Yesterday Thomas had loads of fun playing with rice! He was more interested in listening to the sound of the rice being poured in than playing with it although he did manage to get rice everywhere which was great fun!  The sounds he makes in the video are a new expression for him. It’s adorable to listen to.

The last two days Thomas seems to be much more content. I really hope that this continues because he seems so happy. We’re not sure whether it’s because he’s on an antibiotic, the viral bug has vacated or the change in the new Neocate formula but I’m just so very thankful to have some really good days with Thomas. 

While he has been feeling better, he has been happy to play in his chair again and it has been exciting for me to be able to introduce some tactile sensory play. There are so many things I’ve been keen to do with Thomas and now seems like an ideal time while he is up to it. As you all know, it has been a bumpy last two months so it is such a delight to have our happy little boy back. I have noticed he has more energy and all he wants to do is play, chat, cuddle, and smile! One thing that is tricky is the feeding, but we are easing him back into this.

Today, as a family, we had our very first outing to an event. This is such a huge deal because we need to be organised and Thomas needs to be feeling up to it. Up until now, he has had the occasional quick trip out to the supermarket, or mall. It takes a lot of effort because it is about keeping him comfortable and calm. Going out to an event such as a show is a huge sensory overload for Thomas. As a parent of a child with an NG tube, I have noticed the stares. I’m not bothered by it because I understand that it stems from curiosity or concern. It’s just interesting how different the stares are from the ones we received pre-NG tube days. The stare is not like the friendly smile we used to get and now more so a direct, serious or concerned looking stare. It comes from a variety of people of all ages. I find this a bit oddly. But really, I honestly don’t care. I’m super proud of my boy and I think him the most beautiful child with the biggest heart. We are so proud of how he coped today on a big outing.



Learning Resource Fun!

I am not a big crafty type fan but making resources at school for teaching was always good fun. It was a blast to spend a good few hours this weekend making resources for Thomas at a two day Parent Immersion Course through BLENNZ at the Homai Campus in Auckland. I missed my boy and he certainly missed me. It was delightful to have a cuddle, a smile and coo of recognition from my little man. Ahhhh so delicious!

I loved meeting, sharing, and connecting with lots of lovely, friendly, and open people at the course. Lots of hot topics to discuss like equipment or funding. Always informative learning from others going through a sort of similar journey. For the first 5 months of Thomas’ life, it was a lonely and confusing time because I didn’t know what Thomas’ difficulties were. It was a challenging, and often depressing time not knowing how to bond with a child who cried a lot and had little to no vision. I didn’t know how to play with or engage with him. I had so many ideas in my mind that I would romanticise about before I had Thomas like my baby looking me in the eyes, reading lots of picture books together or pulling funny monkey faces and big toothy grins. 

Since finding out Thomas has CVI from around 5 months onwards, I was able to learn new and different ways I can interact and engage with Thomas. I have written about the Sensory Room before in an earlier post which you can read about, but this was really where it all took off for Thomas. He really came alive. It stimulated him and enabled him to experience and explore his environment. This also allowed me to start to work through letting go of my romantic notions. 

It has been a real education for me to discover the delights that items such as tinsel, vibrating pens, beads, chains, pom poms, feathers, rippled cardboard, and bells can deliver.

Not only did I make some fantastic resources, I bought a few things too which you’ll see Thomas playing with. This is also the first time Thomas has used his tray for play. What a star!

Resources I made

This is a cat’s toy but perfect for Thomas to get his fingers through and hold on to!

See look at him go!

Not real grass hah!

Some neat textures and sounds.

I had a lot of fun making this book!

Sparkly, shiny and makes a fabulous sound when moved on the tray. Thomas particularly liked the gold beads.