Day +13: No News Is Good News

Easter Monday in hospital = significantly reduced activity, for everyone involved.

We had our first real consult with Dr Trahair this morning. Since giving us the "big talk" and then the revised talk, we had seen Dr Trahair twice from our admission to now, and both visits were brief and fleeting.

Dr Trahair came to see us with a reduced team of people, as today was a public holiday and the main team was still on leave. Dr Trahair was pleased with Sean's test results, and noted that the neutrophils and white cell count were both on the rise, which was great news. The team was quietly confident that the transplant would be deemed a success. The word "quietly" was well emphasised - there was still such a long way to go, so while the team was pleased with the progress so far, it was still very much a game of "wait and see".

Sean was in fine form throughout the day. He continued to be quite active and mobile, and although he could get upset quite easily, especially when the nurses approached him to do anything connected to his body, he was also calming down quickly. As soon as we gave him a cuddle, Sean would stop screaming and crying, and enjoy the cuddle from us.

I was concerned that Sean may go backwards in his developmental skills, but there had been nothing so far to indicate that he was regressing. If anything, he was shooting forward leaps and bounds. Sean was becoming so much more aware of words and activities. For example, he knew where the sensor light that monitored his heart rate and oxygen saturations level went - often, we would put the sensor on the bed next to Sean, and he would pick it up and put it on his toe. We often used a piece of coban tape to wrap around the sensor after we put it on Sean's big toe. We'd lay the piece of coban on the bed with the sensor, and after watching the sensor go on his toe, he would pick up the tape and put it on his toe. We would also put a sock on his foot to prevent him from pulling the sensor off his toe, so the sock would be laid out with the other stuff, and after the coban went on his toe, Sean would pick up the sock and put it on top of his foot. It was a huge source of amusement for us to see Sean do this.

Sean was now able to sit and stand on command. He loved to dance to songs - any song - and Sean would sway and bend and stamp his feet. Sean loved to wiggle his bottom, and we would lay him on the bed and say "wiggle, wiggle, waggle" and watch him wiggle and waggle his bottom. A couple of weeks ago, we'd played "Round & Round The Garden" with him, and he'd laughed and laughed when we "ticklied under there". Now, he would do the actions himself, while we said the words. And if we stopped the game before he was ready, Sean would point at his belly and whinge until we played the game again. And yes, he'd "tickly" himself too. Too funny.

Sean was retaining his walking skills, and should now have such great balance, considering how much he moved around in his cot, on top of a soft foam mattress. On the odd occasion when he crawled inside the cot, it was great to see he was now actually crawling on all fours, rather than the bum shuffle scooching thing he was doing when he first started crawling.

Sean was a lot more cluey about what the nurses need from him too, and over the past week or so, Sean developed an aversion to the blood pressure cuff. He knew the nurses needed to check his blood pressure, and would stick his arm out, albeit reluctantly at times, but he would cry when the cuff started putting pressure on his arm. He knew how to put the thermometer into the case, and take it out of the case, and knew it went under his arm. And if you gave him the stethoscope, he'd put the earpieces around his neck and the scope on his chest or belly.

If we asked Sean if he needed a nappy change, he would point to his nappy, or touch the front of his nappy. When we needed to change him out of his suit and into a fresh one, we'd ask him to lift his legs, and he would. We'd ask him where his feet were, and he'd kick his feet towards us. So he certainly knew what "nappy" and "legs" and "feet" meant.

Sean was becoming very good at greeting and "dismissing" the people who traipse in and out of our room all day long. Sean usually greeted the auxiliary warmly - Patsy, José, Irene and Carol all received warm welcomes and farewells, and the medical team were usually "dismissed" with emphatic waves even before they were finished talking to us. Sean loved to wave at anyone who walked past our room, and was always trying to get the attention of the passers by. Sean had taken to waving to me from his cot first thing in the morning - I'd be awake and lying in my bed, waiting for Sean to open his eyes, and when he did, I'd wave to him, and he'd wave back at me. It was the loveliest way to wake up every morning. Sean was also becoming very good at giving us kisses, and was slowly getting the hang of blowing kisses, although he still licked his hand and waved the "lick" on.

So, besides not being able to say anything but "Dadda", Sean was tracking along just fine. We may need help in the future with Sean's eating, but we will cross that bridge when Sean has an appetite again.

Penny came to visit us today, and brought with her freshly made spaghetti bolognese. YUM!!! I was actually craving a large bowl of pasta, so Penny must have read my mind! Penny stayed for a while, and we chatted about her impending move to a new home with Anna and Cody. She was excited about the move, as she was keen for the next phase of her life to begin, but she was nervous too, as they had yet to find a new abode and they were now racing against the clock to find somewhere to live. Jonathan and I hope they do find something soon - the rental market is very tight at the moment, and there are always lots of people competing for the same property. We have our fingers and toes and arms and legs and eyes crossed for Penny and Anna and Cody, and hope they find a place soon.

It is always fun to catch up with Penny, but before long, she had to leave to head home, with a promise to return when she had more time on her hands. Penny was working as much as she could to save up the money for the big relocation, and now that football season had started, she was a lot busier. We promised to call her if we needed her for whatever reason before she could make her next visit.

We tucked into Penny's pasta for dinner, and I was so happy. A giant, glorious bowl of spag bol. Exactly what I wanted. YUM!!!

The little guy has been asleep for a while, and Tina is looking after us tonight. Sean had no problems going to sleep tonight - almost as soon as he was wrapped up in the blanket, he was off to dreamland. The pumps have been beeping a bit more than the other nights so far, but hopefully, once all the medications have been given, those pumps will be quiet. I'm going to sign off and watch a few episodes of Chuck.