Day -4: You Can't Stop The Music

We think we have a musical boy on our hands.

Sean had the pleasure of meeting a very lovely music therapist called Kym today, and was totally delighted with her singing and guitar playing abilities. We watched as Sean looked at the guitar with some reservation to begin with, but as Kym played "Twinkle Twinkle", Sean lit up and really responded. He started playing with the drum, and then picked up the drum stick and started beating it against the drum. There were bells and a tambourine as well, and Sean happily played along to the beat of the music.

Over the past 2 weeks, Sean had become much more interested in music. For ages, when Sean played with his toys that played music, he would bounce up and down and giggle. Before long, he started swaying to the music, like he was dancing. Then one day, 2 weeks ago, out of the blue, Sean walked up to me and started making "star burst" motions with his hands (opening and closing his hands). Exactly like the actions to "Twinkle Twinkle Little Star". I was bemused, and Sean kept making the "star burst" actions. So I started singing "Twinkle Twinkle", and sure enough, Sean beamed his gorgeous smile, twinkled with his hands, and swayed to my singing.

I was so surprised to see Sean making the "star burst" motions. Mainly because I had not spent a lot of time singing to him, or doing the actions to songs, etc. The last time I did "star burst" actions to "Twinkle Twinkle" was during our swimming lessons late last year, to distract Sean when he was suppose to be floating on his back. My clever little man had somehow remembered this, and insisted I sing to him whenever he did his "star burst" actions.

It was such a joy to watch Sean come to life with live music. He loved the guitar, and tried to help Kym strum a tune. Kym asked if Sean had a favourite song, and we told her Sean loved "Twinkle Twinkle", so she played the song and we watched Sean really blossom and take to the live music. Kym played other songs as well, and Sean kept smiling and playing, and about 2 songs in, he started "singing" along as well. It made me happy and a bit wistful to see him having so much fun.

Kym only stayed for a short time, as Sean was getting tired and he was due for a nap. She promised to come back next week to play with Sean again. I had a chat with Kym afterwards, and thanked her for Sean's first ever music therapy session. I mentioned that I knew a bit about music therapy through my volunteer charity work with Redkite, but I'd never imagined that I would ever be using the service for my baby. Kym was really pleased that I knew all about music therapy, and stayed for longer than she had planned to talk with me. We are certainly looking forward to having her back next week for more fun with Sean.

Treatment wise, Sean continued to soldier through the chemotherapy. Today was the last day for the treosulfan, which meant that the extra hydration that was required to flush the drug through Sean's system would be taken off tonight. Sean had been peeing a lot due to the extra hydration, and was looking a little bit bloated from all the fluids, so once the treosulfan was administered, he won't need to have his nappy changed every 90 minutes.

Today was another busy day for us, with the medical team paying a visit in the morning and checking Sean from head to toe. The doctors were happy with Sean's progress, and told us that there was no need for the nasogastric tube to be passed for another day or so. Today was our dietitian's last day of work before going on maternity leave, so we bade Jennifer a fond farewell and wished her all the very best for her impending motherhood. After an inauspicious start, we had grown to like Jennifer and we really hope she has a safe and trouble free labour and delivery.

Kylie the play therapist came by with a laser star projector for Sean, and the galaxy of stars sparkling on the ceiling looked awesome. A great tie-in with Sean's favourite song of the moment.

Jonathan and I continued to marvel at our little man's overall development. This week had seen Sean a lot more aware of things, and being a quick study, he was also learning new tricks. Sean is almost able to blow kisses - he brings his hand to his mouth, but has yet to learn the "blowing" part. Sean can dance to songs we sing him - he can either sway to the music, or he will hang on to something and stomp his feet, like he's trying to do an Irish jig. And he is certainly very vocal and determined when it comes to choosing things to eat - if we offer him something he doesn't want, he bats it away, and if we give him a choice of things to eat, he can and will choose what he wants. For the longest time, I was fearful that Sean wasn't hitting certain milestones relating to food, and even though he still prefers mashy and easy to swallow food, he can pick up food like peas and corn and crackers and feed himself.

Sean received a new dressing over his central line today, after getting a new set of lines hooked up to him. The lines must be changed every 3 days to prevent infection, and considering how tangled and kinked the lines had become over the past 3 days, with Sean twisting and turning and moving about in his cot, it was just as well he was getting new lines.

Our poor little man suffered a bout of vomiting and a bout of diarrhoea today, which was to be expected. Unfortunately, both incidents took place on Jonathan, which was not so nice for him.

Both Jonathan and I went for a walk today, on separate outings. Jonathan said his legs were feeling stiff and sore, and desperately needed some exercise to stretch them out, so he went for a lengthy walk up to Belmore Road in the morning. I did the same walk in the afternoon, and went to Woolworths for a quick shop as well. I also checked out the Discount Store on Belmore Road, but didn't find anything worth buying.

My parents paid us a visit again today, and again brought yummy food for Jonathan and I to have for dinner. Sean was unfortunately asleep when Gong Gong and Por Por were at the hospital, so they didn't stay too long. In fact, Sean slept for 3 hours today, almost completely missing lunch!

After that big sleep this afternoon, it was inevitable that he would have some issues fall asleep tonight. As I type this, Sean has been asleep for about 15 minutes, after wriggling and crawling around in his cot, and getting up on all fours and doing "downward dog" yoga poses. That cheeky thing knows what "lie down" means, but he really pushed his limits tonight.

Only 2 more days of chemo to go. Stay strong, little man!