melanie has been doing about the same. no new major problems for which we are grateful. she has had some significant fatigue issues, but that is nothing new and considering she is still anemic it's not surprising that it would be worse.trying to figure out her fluid balance. her urine output dropped again, so increasing her iv fluids. it is still less than it was before influenza/DIC (and i am giving her MORE iv fluids now that i was then). her weight is still up with quite a bit of fluid. haven't noticed much of a difference since increasing the diuril. will be checking labs tomorrow and will see how her calcium is doing since we've added the new medication.we have been enjoying the beautiful weather. melanie has been able to go outside. i took her for a walk in her kidkart saturday and sunday which she really enjoyed. her new doll and care bear came with. :) she got to play out on the deck and in the yard. she got very tired today and laid on my bed until she went to sleep in her bed. she was also able to go to church this morning. she "helped" me teach the 4- and 5-year-olds the songs for the christmas play, although after the first song she kind of zoned out and sat in the chair.yesterday we went to a fund-raiser for a local family whose daughter has had heart surgery. it was at a local athletic club. melanie played with some balls for a few minutes but mostly sat on my lap and watched the boys play. most of the things she was not able to do. she appeared to enjoy watching them. at one point she said, "i wish i was brandon and ethan. that looks really fun." then she said, "mommy, when i get better will you bring me here so i can play too?" ugh, talk about rip mommy's heart out. she says things like that off and on, and it of course always affects me; but with being pregnant i think it tears at me emotionally even more.today at least she got to do something fun. she and the boys (and her doll and chocolate!) went for a little ride in the back of grandpa's truck up and down our street. she was very excited about that and happy that was something she got to do just like the boys!before this warm spell, chocolate has been cold and shivering. we got him a blanket, and melanie has been wrapping him up so he stays warm. i'll post a picture on the blog site.the x-ray melanie had of her stomach last week showed that the balloon of her gj tube actually looked too tight and could possibly erode her stomach and make the hole bigger than it should be--didn't look like that had happened yet though. so i loosened the disk. this doesn't explain the leaking though. she is scheduled for a barium study to see if we can see exactly what is happening with her stomach contents. we'll do that sometime this week. melanie's skin continues to look better with the addition of the new medication from about a month ago. she has one spot on each arm that is open and bloody and oozing still. today i put gauze over it and used the mepitac tape that her skin can actually tolerate to secure the gauze (making sure the tape did not get on the open skin of course). she cried some when i did it because the tape was irritating, but she was able to tolerate it. i don't know if covering it will help or hinder, but hopefully since she at least can't scratch it directly it should help some.tomorrow is the big day for finding out if we are having a boy or a girl. scott and i will find out in the morning. i'll tell the kids and then i'll post it on here when i get a chance! exciting to think this will be the last night i will not know if this little "butterfly" i feel is a boy or a girl. then onto figuring out a name! i think that is going to take a while, although the kids already have their votes:brandon: autum for a girl, eric for a boymelanie: sara for a girl (though the other day she changed it to sally), tommy for a boyethan: princess leia for a girl, luke skywalker for a boy :)

we could use a few prayers in the insurance department. since i had to resign from mayo, our insurance is now through scott's work. they are refusing to cover some of melanie's medications, sending us wrong kinds of some medications, and now say she has reached her maximum benefit and we will have to pay full price from now on. obviously this is not impossible when just ONE of her medications cost around $3000 a month. we have not received a couple of her medications because they want full payment for them. i've made multiple calls--being disconnected twice and had to go through the whole automated system again--and have not gotten very far. i enjoyed taking a break from it this weekend but will have to start making more calls tomorrow. she ran out of one of her medications tonight and only has a week left of another one. yet another one we cannot give her because she does not absorb it--it is prilosec beads. the beads are nearly impossible to get in her j-tube to begin with, if we can get them in they clog her tube, and then--14 hours later--they came back out the tube as still-formed purple beads. she is not absorbing the beads like she should. so far they will not send us the compounded liquid form, so she has not gotten that medication for days either. the other medication they refuse to cover at all we are trying something else instead--it actually ends up putting her on two meds instead of one, but it is cheaper so they say we have to do it that way. there are some that have never been covered by insurance, so those we continue to pay as usual, but there is no way we can pay 100% out of pocket for every medication. very frustrating to take care of her when we cannot even get the medications she needs to keep her systems from deteriorating further. i am not looking forward to the hours and hours of calls i will need to make to figure this out. prayers that we could find a quick resolve would be greatly appreciated!


in the back of grandpa's pickup:

melanie giving chocolate some snuggles in her kidkart

the kids playing legos on the deck:

melanie sleeping with her new care bear, thank you carrie!

melanie got chocolate all bundled up to keep him warm