Long overdue post....

Sorry, I normally don't wait so long to update unless things aren't going well, but this time the delay was just from the holidays. :-) Charlie is actually doing REALLY well now. We switched around a couple of meds and decreased another and I don't know if it helped or was just a coincidence, but she no longer seems to be in pain at ALL and we're packing almost double the calories in her every day. We think she's gaining but haven't weighed her yet. I read about a condition that could explain everything wrong with her (well, that GI problem specifically anyway). It can be brought on by a stressful situation (including physical ones, like illnesses) and can be treated sometimes successfully with meds and sometimes it goes away on it's own. Sometimes it does require IV feeds though. She has no diagnosis so far, but I'll be bringing it up next time we see the doctor, for no other reason then if it happens again, we'll be able to treat her better (hopefully). Some of the meds used to treat it were ones we were discussing anyway before she started to get better.

We had a nice xmas. I made all the gifts again. Adrian got felt food:

I worked on it for months before xmas. I was a little worried because I thought maybe he was getting too old for play food, but he LOVES it. He plays with it for an hour at a time every day he's with me. I packed it up with picnic supplies: a red, checkered blanket with matching cloth napkins, two sets of dishware and utensils, and a basket. He has everything he needs for breakfast, lunch, dinner and snacks. :-)

Charlie got monkey finger puppets so we can act out "5 Little Monkeys Jumping on the Bed":

I need to get more pictures, but I also made them each pajamas, a hat, puppets, and Charlie also got a wall hanging I made using pictures from her favorite book. That was her "big" gift from me. It was a LOT of work!

Charlie chilling on the presents.

Hanging out with bubby in bed. He's been very sweet with her lately. But I did kick him out of the bed because it was just too crowded for all of us (now he sleeps on a mattress next to me) so he crawls up into my bed in the morning and snuggles with his sister. You can see her arms are filling out again. They were getting awfully scrawny before. :-(

And, finally, I let a group working with palliative care sponsor us this year. I said no at first, just like last year (I'm a proud mama and do what I have to in order to make xmas for my kids awesome) but they asked again (almost begged it seemed like LOL) and Adrian really needed new clothes so I said ok. I didn't expect quite so much though! I had about 12 presents under the tree. Family added about 5 more. By the time we opened them though, there were 55 presents under the tree! Yup, all from the group that sponsored us. They also brought 3 big packs of diapers for Charlie which will probably last us months. We still use cloth about half the time, so a huge pack of diapers last at least a month. Adrian got plenty of much needed clothes (the kid is growing at a phenomenal rate....about 6 inches in the past year and 3-4 shoe sizes). Both kids got some toys. And I even got stuff! A winter coat, bath towels, slippers, a shirt and sweater.