Fantastic Apps for the Vision Impaired.

Thomas was given an IPad for his first birthday. We were very grateful that family pitched in to help with this very expensive piece of equipment. I was able to have a play with different apps at the BLENNZ Parents Immersion Course prior as well as give Thomas the opportunity to use it at the Homai Campus ECE centre. I decided the IPad was the right tool (as opposed to an Android) because of the larger availability of apps. There was especially one I specifically knew about that was designed for children with Thomas’s eye condition but only through Apple devices. 

Here are the apps we use regularly. At the moment, Thomas is using the IPad everyday, sometimes a few times a day and no longer than 15 – 30 minutes. It is part of his Vision Therapy and Fine Gross Motor skills. 

 

I ❤️ Fireworks Lite

 
 

Cause and Effect Sensory Sound Box

  

Cause and Effect Sensory Light Box

    

You can download a bundle that includes the Cause and Effect Sensory Light and Sound Box. Both separate apps. Costs for the full version but cheap.

The Duck Song

  

Storybots

  

There are two Storybots apps that are both free! One is a piano and the other is a whole bunch of songs. Thomas absolutely loves the songs. His favourite is the ‘Elephant’ song and ‘Down by the Bay.’

Fisher and Price B&W High Contrast

  

Tap and See Now

 

If you know of some other fantastic apps appropriate for children with cerebral palsy, CVI or low vision feel free to share. I am always hunting for new apps to trial.

Goodbye NG! Welcome G!

It’s been a month since my last blog update about Thomas and a lot has happened!

Thomas had his first surgery on the 2nd of September. We received the call less than 2 weeks prior and I made a post on Facebook the day before we went in for the Gastrostomy surgery. I thought that maybe it might be cancelled or something. I think I needed that time to get my head around it. I had been waiting for 7 months for that call and I finally got it. I felt nervous, and a little worried because it was actually going to happen. I knew it was the right thing for Thomas but I still felt horrible that he would be scared, confused and in pain.

We had both decided against getting the Nissen Fundoplication procedure as it was never originally recommended by his Pediatrician and his reflux was mangaged well by his medication. He does not have problems with gagging or retching either. The surgeon recommended not to proceed if there were doubts and if the medicine was helping. It is a procedure that can happen later on if we feel he needs it.

http://www.feedingtubeawareness.com/different-types-of-feeding-tubes.html

 

In recovery room, just out of surgery.

 
The surgery went really well. Thomas was discharged the next day in the afternoon. Usually it is about a 3 day stay but Thomas was back to his chirpy self the next day and I had fed him through the G tube and picked it up straight away. Thomas does not cope well when out of routine or his own environment so returning home so early was a great relief. We were so happy to have my mother come to stay for a week to help out. I was really expecting Thomas to have more pronounced dystonic episodes due to the pain but he only had issues following the surgery and that first night. After that, I managed his pain relief and slowly tapered it off.

Mr Chirpy.

Thomas has not been back at therapy yet but he is able to sit in his pram, feeding chair and playing in the sensory room or in bed. We have definitely noticed that he seems a lot happier in general. He is dribbling less too. He is eating the same volume of food topped up through the G tube and maybe a little bit more orally. Thomas has regressed a little with his oral feeding of chunkier foods. He seems to cope fine with soft little bits of pasta or rice but not peas, carrots or corn. These he will sometimes struggle with or will eat less due to tiredness from chewing.

We do not need to check the positioning of the tube like we used to with the NG so that saves time. The site needs to be changed and cleaned everyday. We can still give him his medicines through the tube. The tricky part we are finding is keeping his hands away from the area. Thomas’s range of movement is limited and often repetitive. It is not always controlled either. He has a very strong grip due to his increased muscle tone so we have to keep a watchful eye on his arms and hands. The Safe T Sleep wrap has been an absolute treasure. While he plays in the sensory room he has a smaller blanket around the area. I have recently purchased some G Tube pads from TubieLove. We’re not using them yet while he heals. They are super adorable.

 
It has been a big relief for us all I feel. I can see that Thomas is not as uncomfortable. He seems free. I really think the NG caused him a bit of grief. The plasters were really damaging his cheeks. It has made feeding a bit easier. My big focus now is to get the G Tube healed!

 

Funny boy!

  
 

Episode 00: An introduction

An amazing first podcast from Tessa.

So excited to be a part of this!

Grieving for a child I haven’t lost

Oh man this is heavy. I am thankful Thomas can say some words but I grieve a lot for all the experiences I envisioned sharing with Thomas that I know will not happen for us. It is exactly as said, you are grieving a child you never lost. Just because I grieve does not affect the love I have for my son…ever.

faithmummy

As I sat on the bench in a public park the tears came easily. Watching little toddlers peddling trikes and mothers chatting to babies. Seeing pre-school children laughing and chatting as they wheeled around the water on their brightly coloured scooters.

It has been building for a while.

The night before last it was anger and hurt as a friend shared how her 14 month old was defiantly talking back when they were trying to get her to bed. I wanted to scream and say ‘but she understands! But she talks!’ Instead I mourned silently.

The world goes on while I grieve for a child I haven’t lost.

It is a very different pain to others. I know the pain of not having children. I know the pain of losing a yet-to-be-born baby. I know the pain of losing someone very close. I know that feeling of despair and anger…

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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 😀

Gentleness – it helps

I have read oh so many articles and blog entries about a range of acceptable and unacceptable ways to speak with a parent of a child with special needs. 

In each one, one common theme that struck me was how unacceptable it is to ask another SN (special needs) parent ‘what is wrong with your child?’ 

Today, for the first time, I was asked this very question.

My response?

Nothing.

How did it make me feel? 

Terrible actually. 

There is absolutely nothing ‘wrong’ with my child. Wrong, by definition means, ‘not correct or true, inaccurate, inexact, invalid, untrue, false, faulty …’  and the list continues. You get the picture I’m sure. 

When I responded, I simply said “nothing” and followed it with, “he’s beautiful.” I knew what she intended to say but I answered her in truth and I meant it. He is perfect to me. Yes, he has challenges but this does not define him. I don’t want this to be what people remember about him. He has so many other beautiful qualities.

 Just ask and I will tell you. Or don’t and I will anyway!

The lady then asked if he will ever walk. I said, questionable. I don’t know this?! I find that most people ask this which tells me that we have become so square. Black and white. That we need to define people based on their ability to meet milestones. 

Does it really matter in the end?

I think not. 

What about making sure your child feels happy and safe. 

That’s all I care about.  

 

A short dream

Dreams. 

I enjoy dreams. I don’t have many dreams as sleep is so often interrupted. However, the times I do dream, I like to dwell on them a little. Think about what it might signify about life or how I’m feeling at the time.

I do not recall having many dreams during my pregnancy. Since having Thomas, I don’t think I’ve had more than a handful of dreams about him. I wonder why is this so? 

I had a rare dream about him the other night. I shared this with my husband and I had decided that although the dream was fairly pleasant, it was a reminder of a reality that is the not so distant future.

It made me reflect on why I dream so little about Thomas and how he features in my dreams. I do not often see Thomas in my dreams. He is present, but never visible. In my dreams I find this unnerving because I would wish to see him in order to know that he is safe. 

The other night I did not see him but I heard him. He was crying. It was because he was being held by a person who did not know how to hold and comfort him. I remember telling them how to comfort Thomas. During this time I was trying to remember how to put together Thomas’ new wheelchair. I was struggling to remember how to put it together. It looked like silver, and very shiny – brand new in fact. I was feeling frustrated for not knowing how to assemble it. We needed it for Thomas to get onto a plane. It was just Thomas and I and this other individual who was tending to Thomas. I figured it was a minder for the flight. Where we were going I have no idea?

This was my dream. Just a short one but it left me thinking about the day that I know will be coming when we will receive a wheelchair specifically fitted for Thomas’ dimensions. I will diligently listen to the visiting technician tell and show me how to use it and then will come the first time I actually do use it and I will hesitate. I know this because it happens everytime Thomas receives a new piece of equipment. Equipment that is big and complicated. Equipment with lots of straps with loud Velcro which Thomas abhors. Equipment that is a necessary requirement for Thomas. 

I recall the dreams that I used to have back when Thomas was maybe 6 months or so where I saw him crawl or walk. I remember how beyond happy I felt to see him do these physical feats and then I woke up. It was a nice feeling but it wasn’t a reality in our distant future. This I knew. 

I don’t have these dreams anymore.

Happy does it

Since the last post, Thomas was unsettled for about a week or so. It turns out he has another tooth coming through as well as a growth spurt where he ate like mad all day! He was very fussy, not sleeping well, and didn’t want to play! Oh man it was hard work. Of course, he was settled for his carer Sam. For anyone, who isn’t aware, we get a variety of different hours for different forms of respite. The respite has been an amazing help, enabling us to have extra help or time out. Some days, or weeks can be particularly tough. We get through it, but it really does test your limits and I’m not just talking about the sleep deprivation. Sleep deprivation is the rotten cherry atop my melted, curdled sundae. It is just another thing that comes along for the ride, the nail in my tyre, wearing everything down.

Recently, we were visited by the hospital social worker. We were discharged from them, but Thomas’ therapist was worried that things were a bit much and wants me to have a decent break. Somehow she was not aware I am getting time out but the days she visits, Thomas is usually really unsettled. Perhaps, maybe me being in my nana pants didn’t help but I’m sure Thomas doesn’t mind what clothes I wear! Anyway, the social worker came along and she is going to discharge us again. The good news is she’s going to organise the paperwork for us to apply for a mobility parking permit that requires the Peadiatrician to sign off. It will make life easier for us to be able to get Thomas in and out of the car with the parking spots usually being wider as well as closer to whatever it is we visit. Thomas is now 18 months old, and still needs to be carried like a newborn. He does not walk, crawl, sit or have full head control. He needs lots of support while being handled too. I don’t know if he’ll ever be able to do the above milestones but for now, he cannot. So I’ll leave it at that. We often get asked if we think Thomas might walk one day, but I can’t answer that. I don’t know the answer. Ask me what Thomas likes or dislikes. I can answer that or about his conditions. I’m comfortable explaining what they mean. 

Honestly, I only want Thomas to be happy. That’s the number one thing that matters to me. I want him to feel safe, comfortable and happy. When he is happy, I am full of happy too. When he is not happy, well, you know how it goes! 

  

Moving to a better home

Been a quiet time on the blogosphere for me however I am keeping up with the quick Facebook updates. 

Joe and I had decided that we needed to move into a bigger house with a more accessible bath for Thomas. Bathing Thomas is not easy and I know how much Thomas loves the experience, that I don’t want an awkward bath to discourage from regular bathing. It was awkward because the access to get into the bath had a set in glass panel covering half the bath. It meant that I had to do a majority of the bathing because I am smaller and can manoeuvre myself around the glass panel while supporting Thomas in his specialised seat. I was managing the bathing quite well for awhile there until Thomas started to get longer and heavier. My poor back was not coping and due to Thomas’s growing length, his foot or hand would sometimes get caught on the way in or out. Sometimes he would be fast enough to grab onto the glass panel. Cheeky monkey!

It took a good few months of looking around to finally settle on a place that would suit us. Trying to find a place to rent in Auckland is not easy within itself but to also have specific requirements like ours was even more difficult. Most houses we looked at didn’t have baths or had lots of stairs. Some were on busy roads or clustered with lots of other houses. We were hoping to find somewhere calmer. 

Success at long last in Te Atatu Peninsula! A lovely warm home in a much quieter spot. Not crammed in and yes, an accessible bath. Thomas has the biggest room too for all of his equipment. We were running out of room at the other house so what a luxury to have more space to sit and play with Thomas. We have all settled in very quickly and I am feeling less confined, and more at ease to live in house that feels more like a home.    

You can see the glass paneling above. The kind of chair we use is called the Riften Blue Wave Bath Chair. http://www.rifton.com/products/bathing-and-toileting-systems/blue-wave-bath-chairs

  

Thomas above in the new bath. Below are the last pics of Thomas in his old bedroom. We had him sleep on a mattress for a night or two as the crib was packed up ready for the move. He enjoyed being closer to the wall and spent about an hour or more exploring it with his fingernails. All we could hear on the monitor during the earlier part of the night was ‘scratch, scratch, scratch.’ Cheeky monkey!   

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!