Daley Ponderings

I had to go calculate the day since we no longer count the days like that any more - it has been great to have less medical stuff going on these days, and we get more comments about her being "so cute" in the grocery stores and the soccer games, etc.

Her hair is growing in, and I don't think I've heard her referred to as a boy in a while (for a while she just looked like she had a really short haircut, but it is growing out more).  She discovered the 18 month clothes bin in the attic the other day and has been wearing some onesies, since she mostly still fits into them.  She'll turn three next month.

We continue to do weekly dressing changes - we had a full day yesterday and so she fell asleep during the change - it is hard to imagine kids screaming through it, but we are certainly blessed to not have that problem. She happily puts on her mask and then holds her hands above her head until it is done.

She has been gaining weight, and we've started up the steroid tapering off again and doctor visits are every other week, once a month to Dartmouth and once a month to Boston, so that schedule is nicer too.  It is possible that the steroid taper will be increased and be done soon, which then triggers the start of the cyclosporin (immunosuppresant) taper, which will be the end of the meds entirely!

Her nasogastric tube fell out while she was sleeping last week.  Both Heather and I had seen the tape was getting loose, but neither of us expected it to fall out, so we thought we would replace the tape the following day.  .  However, Grace woke up in the morning and brought the tube down already pushed out of her throat.  So, we proceeded to the semi-unapproved installation of a new tube, and it went successfully (I tested it out on myself last month, and got the tube down about a foot before gagging and deciding that if I needed to, I could do it, but since this was just "for fun", didn't need to continue further.  We'll see what Boston says about that on Wednesday.  Last time, Dartmouth recorded the procedure as "without contacting medical providers", and did an x-ray to confirm proper placement, but didn't explicilty forbid it in the future...  I think that because we know the exact length of the insertion, there is fairly little risk involved - a nurse at Children's told me that she will really start coughing if it is in her lungs rather than her stomach, and we verify the pH after insertion as well (the supply house apparently thinks it is reasonable for us to do the procedure, because they send all the equipment to do so, though maybe they are thinking a visiting nurse - they are sometimes surprised to hear that we do dressing changes ourselves).

The soccer "orange out" event was great - the high school principal said there was a "sea of orange" in the school that day, and there were a lot of people wearing orange at the game.  And they had a short presentation and a picture before the game.  And they had the captains of the opposing team give us some flowers (which though they are on the list of not allowed items in the house, we're thinking that probably that risk is pretty small at this point).  And they raised $1,600 for us that I've been thinking about donating to Hospitality Homes, an organization that provided subsidized housing to us in Boston, though I've also been debating about using part of it for some sort of special trip for the family.