May 10th

From Christine: Today was a really good day. 

Christine had her good friend Janie with her essentially all of today, and so she had a really great day. I wasn't with them so I'm not sure exactly what they did, but I think they spent some time outside, and I know Janie painted her toenails and finger nails, and I'm sure they spent lots of time talking. Janie is the one who started the fundraiser for Christine! She is much better at taking pictures than we are, so today's post will have lots of great images.

A picture of Janie and Christine outside.

A picture of Janie doing Christine's toes. 

Applying awesome body butter, courtesy of Rachel. 

Medical updates for the day are that Christine woke up in quite a bit of pain, it's been a bit of a rocky transition from the PCA IV pain meds to the oral pain meds. Her knee in particular was really bothering her in the morning, but the pain meds in combination with some ice gave her some relief. The swelling is about the same, and I think they were talking about maybe draining the knee tomorrow. Christine was explaining to Dad and I tonight that the doctors think the SJS reaction is basically happening in her knee, and there are layers of fluid (or something like that) inside the knee. It's apparently a very rare condition. Christine was wanting to taper the steroids faster after her discussion with Derm last night, so she asked this morning if she could hold off on the steroids until the doctors gave her an answer about lowering the dose. Unfortunately, nobody got back to her all day and its now 11pm and she still hasn't had today's dose of steroids. I just spoke with the nurse about it and it sounds like she is going to get dose tonight, and then tomorrow morning's dose will be given a bit later to space it out some. This could mean that Christine is wide awake most of the night as steroids cause insomnia, but luckily she has been sound asleep a lot of this evening so she has had a chance to rest. 

Dad will actually be staying with her tonight and through a lot of tomorrow - a Dad sleepover hasn't happened yet! Christine is actually pretty excited about it, even though she is presently sound asleep while Dad has a late snack/dinner. I forgot to mention it last night, but there are signs of healing in her mouth finally. I can visually see the tip of her tongue looking better, and her lips are looking much better. She still has a long way to go and the swelling in her joints is a new issue... but its encouraging to see some improvement!