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! 

 

The choices we want to make.

Please note that I wrote this post and we ended up in hospital numerous times while Thomas was unwell. I now realise that Thomas is now due for his vaccinations…just due. Now the worry is very fresh in my mind. I am still waiting to hear back from the doctor about what I’m supposed to do. 

Vaccinations…
A hot topic. I’ve seen a lot of articles popping up about this especially with the Disneyland Measles outbreak. Every time I see an article, I see hundreds plus comments to follow. Often these comments are ongoing arguments between people, yes mostly parents, who are for and against vaccinations. It’s interesting to read the comments because of the different perspectives that arise for parents against vaccinations. And not because of choice in some situations.

If Thomas had no major health issues I wouldn’t worry so much. It would probably be a case of a grumpy baby for a day or so and its over with. I don’t know quite honestly. I also don’t believe it’s an easy process even if you have a healthy child. There’s nothing worse than seeing your child poked with a needle and tears to follow.

Thomas was 6 weeks premature but still received his first 6 week vaccination when he should have been in my tummy. It completely wiped him out too. He was so tired he couldn’t breastfeed and required nasal gastric feeds for the rest of the day. I felt thankful that he was able to be fed but sad that it wasn’t from me. I felt powerless and useless.

What followed were two more vaccinations at 3 and 5 months. With both vaccinations, Thomas was hospitalised within 2 weeks with seizures. The second hospital stay was over a week due to a rare seizure type, infantile spasms/west syndrome. His form of treatment involved over a month of intensive steroid treatment which left him immunosuppressed for 6 months. This means that he was extremely vulnerable. During this time we held what is called an open letter that means that if he had a slight fever or runny nose, we were to take him to hospital and present the letter which placed him as a high priority. During the 6 months which followed, including winter, I lived in constant fear or worry that Thomas would catch a cold and end up in hospital. We stayed home a lot. Visits were limited with friends and family. Fortunately, Thomas had one cold and terrible eczema.

It’s now been more than 6 months since the treatment and Thomas’ neurologist has advised no vaccinations for now. He’s not due for his next for a few months yet. His GP recently raised the topic during an appointment. She said she would do some research on the process for children like Thomas. This made me realise that vaccinations will never be straightforward if medical professionals are needing to put a plan in place. She mentioned two possible options such as increasing his seizure medication over a 2 week period or hospitalising him for a short duration.

I wanted to write about vaccinations so to encourage people to please not judge one another so quickly. I’m not against it but because of Thomas’ complicated association with it, it makes me appreciate that not everything is so straightforward and that some parents do not get a choice. For now, my choice is limited to following instructions given by medical professionals. 

There is a part of me, a big part, that worries about the next vaccination and what will follow. I understand the feelings of hesitation, desperation and resistance towards vaccinations. I only want the best for my child.

Hello, just a small post!

Wow, it’s been over a month since my last post however if you follow the Minding Thomas Facebook page you’ll be a bit more in the loop. It is faster to quickly write a few sentences along with a couple of pics or a video on Facebook. In saying this I have been wanting to write lots and lots of things that are on my mind but need the time to do so which is a bit trickier now that Thomas only has one nap a day!

There has been lots of exciting things happening with Thomas developmentally. I want to write about this also. At the moment however I am far too distracted by the nursery rhymes playing while Thomas entertains himself in the sensory room, chatting away. I am also extremely tired since Day Light Savings has screwed up Thomas’ sleeping routine with him waking really early! I’m in constant Zombie Mode as I’m sure many other parents with little ones can understand.

It is the second week of the school holidays and we have had one week off therapy. We are back into things this week. This includes his therapy at conductive education and through CDC. Thomas has had his nana come stay for a week and then we will be travelling up North to see family soon too.

So, this is really just a quick post to say hello! Yes, we are okay and doing well (i.e. No hospital or doctor visits!), and I intend to get back into a better rhythm with posts because there’s lots of things I’d like to write about. Some of these posts will be about how things are going with Thomas, and topics that I’d like to talk about. 

Of course, here is a pic for you lovely people out there reading this blog!