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.



Life with Thomas

I am thankful to everyone who reads my blog that has offered kind thoughts, love and support. I know that the blog is an important tool for keeping family and friends informed and to connect with people from around the world who are either years ahead in the unique experience of raising a child with complex needs or maybe only recently introduced to it. I am no expert on every child, only my own son.

I really wasn’t sure whether to write about such a sad, and sensitive, and private part of our journey re: the Advance Care Plan post, but I feel it is important to share so to educate and make people aware of all facets of our journey. I wrote the post so to share my feelings on the matter.

Because Thomas has been unwell for the last month or more, and with winter coming up, it would be an appropriate time, the Pediatrician felt, for us to discuss an Advance Care Plan should Thomas’ health deteriorate. 

Currently Thomas is on the mend. He has recently started a new medication to treat his chronic constipation and consequently faecal impaction, with Movicol. He is on a week of increased dosage to flush everything out. He was very blocked up! To the point that the Pediatrician could feel it upon physical examination and when examined, Thomas’ dystonic episodes occurred which now tells us that his dystonia was fuelled by the pain and discomfort of the constipation. We are now on day 2 of 7 of the flush and it is definitely working!!!! Because of this Thomas has really bounced back to himself, mostly, which includes playing in his sensory room more often, sleeping more, eating without dystonic episodes and chattier and smilier. We are so relieved and happy to see him getting back to himself again. I understand now that he must have been in a great deal of pain for quite some time. 

Although Thomas is on the mend, we did have a little scare last night where we spent many hours in ED. All is well now. He had an NG feed and had a little vomit afterwards. He seemed to be choking a little bit. He had laboured breathing and seemed more limp than the usual. I was advised to take his NG tube out because I was not able to aspirate from his tummy and to take him to ED to have a new one put in as well as check his chest for aspirated fluids. He had an X-ray which came back fine. A new, much longer NG tube was put in and Thomas needed to be monitored for an NG feed. He seemed fine, although distressed by the other crying children and poking and prodding which infuriated his dystonia! We think the reason we were not able to aspirate fluid from his tummy, is because the tube must have been slightly dislodged from the vomiting. I was only drawing air out even though he’d just been fed. In theory I should have been able to draw out a little of what he just ate. 

Sorry if this is too much info! It is a bit yicky sounding but it is part of our feeding routine. The reason for drawing a little fluid from the tummy is to always check the NG tube is in the correct place in the tummy. Once fluid is drawn from a syringe from an opening of the tube, you then squirt a little onto a pH testing paper that tells you if it is okay to go ahead and feed or not. The photo where I am holding an end is the end that sits in the tummy. If you have any questions or want to learn more about it please feel free to ask. I am comfortable talking about it. The goal now is to teach other family members who are keen to learn how.