Friday, December 24, 2010

A Very Merry Christmas...

Well, maybe this picture is not the best representation of a Very Merry Christmas...but, really it is.  Bean freaked out a bit for her Santa visit - to be fair to her, we had to wake her up from a deep sleep to get the picture.  But, at least we have one this year.  Last year, we missed out on Santa because of her immunity system.  This year, we felt much more comfortable since she's been really healthy and we went to a relatively small-scale Santa for the visit (no mall - just a light show that Orland, CA does every year called Avenue of Lights - it was great). 

I must admit that the last few months have been a little overwhelming for me.  I just haven't been able to get a handle on things - grading, class prep, housecleaning, appointments for Bean, etc.  It just all seemed to kind of pile up and I could never dig myself out.  So, I was very happy to see the semester end if for no other reason that it would give me some time to get caught up and maybe even relax a bit.  The relax part has not really hit yet because we had so much to do for Christmas prep - getting a tree, shopping, decorating the house, etc. - which was fun and turned out really well, but has still created a long list of to-dos since school ended. 

The last month has been pretty good for Bean medicine-wise.  She is now down to only four medicines in the a.m.!  That's right - only four!  I believe we started out with nine and we were still at seven up to a few weeks ago.  But, she is no longer on the Predinisone, which meant she could come off the Pepcid (which she took because Prednisone often causes stomach problems), and she has stopped taking Lasix!  It seems like something is missing each morning now, but what a relief to see her come off of some of the meds.  So, our drug regimen is now:

8 a.m. - Prograf, Cellcept, Diltiazem and Magonate
2 p.m. - Diltiazem, Magonate and Lipitor
8 p.m. - Prograf, Cellcept, Diltiazem Magonate, Septra

Pretty simple compared to where we began just over a year ago!  We are still playing with the Prograf levels and she is currently getting weekly blood tests to try to get the level where it should be - we've gone up, we've gone down, back up again one time a day, back down again.  Hopefully we can get it figured out..but, until then, we just have to get blood tests and change the amounts.  In addition, we are on a break from her Periactin, seeing if cycling off of it and coming back to it next week might jump start her appetite again.  We'll see...

She has not grown as much as I had hoped.  She is still wearing mostly 9 MO size clothes and still fits in some of her 6 MO pants.  I am hoping she will be at least in 12 MO clothes by the time she turns two, but we shall see.  We have an appointment with the endocrinologist at Lucille Packard in February as well - to get her checked out for growth and make sure everything is okay in that department.  She also has a biopsy in January.  So, not much of a break in the medical department for us, but at least I'm not teaching for the month of January, so its easier to schedule travel, etc. 

We're excited to have Christmas at my parents tomorrow - Bean still doesn't really get the whole Christmas thing, but she loves tearing into paper and says a great "Wwwwoooowww" when she sees new things in a box or bag, so it should be fun.  I will have some video rolling and will hopefully post something for you in the next week. 

I hope everyone out there has a great Christmas and gets all the gifts they need and want.  My thoughts and prayers will be going out to our donor family this holiday season - it must be a devastating time of year.  I hope they can take some comfort in knowing that they have given this family the only Christmas gift that they would ever need - the health of our daughter.  We love all the other gifts, but this is truly more than we could ever ask for or expect and it came from a stranger.  Please remember that and send a good thought/prayer out to all the donor families who must deal with their loss this holiday season.  And if you have not already, please consider becoming a donor and giving the most amazing gift out there...the gift of life.

Merry Christmas and to all a good night!

Sue, Jason and the Bean...

1 comment:

  1. I love the Santa picture, you must have one of those-the crying one!
    I am also glad the semester is over, even though I only did one class, I was overwhelmed. You have so much to take care of with Bean health-wise, work, school and the house would be crazy. But that is great about the meds. I am also having trouble with drug levels, mine go up and down constantly.
    That is soooo cute about the present opening, you have to post a video.
    I also feel for my donor family because I think she does not have any other family.
    Hope you guys are having a great day!

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