Day 26 Update

This morning was another new adventure. Nathan got up a few times in the night to go to the washroom then he woke up about 4am feeling a little peckish. His wonderful mother got up and made up macaroni and cheese but that didn't fill the spot. So he had a couple of bowls of yogurt, that was better but still not quite doing it. So, of course, he had to have a plate of potatoes and peas to fill in the gaps. Well, eating like that at 4am sure doesn't make for one to be tired afterwards so after discussing it with Shelley until 5 am those two decided to get up for the day. They were up for awhile and started to get things done. Made some coffee for mom, poached eggs and sausage for Nathan and played some cards and drew some pictures to pass the time. I got up about 7:30am to see if I could get in on the action! I actually chased Shelley back to bed and Nathan decided he could lay down again too. While I was contemplating what I should do Justin woke up and figured it out for me - play with Justin and keep him quiet. Carter got up at around 8:30 to join Justin and I, Nathan managed to stay in bed til 9am and Shelley until shortly after 11am. What a way to spend a morning!

Nathan has paused a few times in the mirrors the past two days and Shelley finally asked him today if he had trouble recognizing himself. Nathan immediately started crying as he didn't recognize the chubby face and big body in the mirror. He has become very self-conscious of both his appearance and his weight. It was hard explaining to a five year old that he will wear all that excess weight off to get back to normal and that it was just the steroids that made him like that. After a talk like that do you think he wanted to keep taking his steroids?! He has been good though and does take his medication faithfully, even reminding Shelley and I if we forget. The funny part is that sometimes he reminds us that it's time but then does not want to take it. [and here was a great example - Shelley and I forgot to give Nathan his magic mouthwash before bed. Nathan just woke up (11pm) to go to the washroom and while he was in there he asked "don't I have to take my swish and spit?" And so we just did it]

Following up on our good news story from yesterday is that Nathan's walking is even better today. He started walking by himself now without us holding him or his hands. He still wants us to accompany him but he is walking on his own, albeit with a pronounced limp. To me this is a great sign as it means that the blasts must be down in his marrow and that our Gold Standard Day 29 is looking promising.

Tomorrow (Sunday) most of my family is coming in to celebrate Christmas with the boys and us. Hopefully Nathan gets a good rest and has a good day tomorrow!