Sometimes you sit down with a beer in your hand, get all ready to watch the ol' teevee and just BAM! you fall right to sleep.














I've learned that i should post on here prior to finishing my workload of other stuff from the day. By the time i'm done with everything else i just don't have the mental fortitude for typing up even the briefest description of our lives at present. It's just one "i'll do it tomorrow" after another.

Things have been rough the last couple of weeks. We've settled into a strange sleeping routine wherein i (should) go to be around nine in the evening and Christine stays up with Tuesday, who doesn't sleep in any appreciable amount at night and has a greater tendency to spit up, cry, fuss and just generally need lots of attention during the wee hours. Then i get up between five and seven in the morning, depending on how tired Christine is, and take care of the baby until i leave with the other kid for school. Christine is getting almost no sleep these days. She can't sleep if i'm not home and i'm not home quite a bit. After the apnea episodes of a few weeks back we decided to decline the respite care for Tuesday, but it's looking more and more like we're going to ask for at least one day a week of someone coming over during the day time so Christine can sleep.

Tuesday continues to hang in there. She came down with a cold that had us all a bit worried but she seems to have fought that off now. On the downside, however, he stomach got even more sensitive during that time and we ended up reducing her feedings more and more until she was hardly getting anything. We've tried to increase her formula intake again, using a very slow, constant pump, but her little tummy just can't handle it. When we set the pump rate to where it used to be she just spits up. What this means is that she isn't getting the nutrients she needs to keep growing. She appears to have lost some weight.

Our hospice nurse, who is an incredibly kind soul, told us not to feel guilty, that many times people in the later stages of terminal illness stop taking in food to a large degree because their bodies just aren't able to process it. We want to feed her, it's a parental instinct, but Tuesday just doesn't seem to want it. Paradoxically enough, she seems most content when we are feeding her very little. Very little about this whole experience has been easy, but watching our baby daughter's little arms and legs get skinnier has been particularly hard.

On a much lighter note, one of Tuesday's new favorite pastimes is getting the fingers of her right hand into her mouth. This is no mean feat for her and she seems very happy with herself when she's able to pull it off. We're pretty happy about it too. We're very proud of her.



Every time you say goodbye, you should tell them that you love them.