Saturday, June 5, 2010

Zero = Perfect Score on this Test!

We got great news yesterday!  Bean's latest biopsy came back a zero for rejection!  This is the first time since her transplant that she has shown zero rejection and the docs were starting to consider changing medications (again) if it didn't happen this time.  So, we are all relieved and happy that she is (1) fully accepting her new heart and (2) able to start weaning off the prednisone (which may be contributing to her lack of growth to this point).  Prior to this, she has had mostly 1 or 1A results, with a couple of 3s thrown in for good measure (and three day hospital stays).  So, hopefully we have the medication levels figured out and she will continue to get these zero readings for a while.  We now get six weeks off from clinic appointments and a whole three months before the next biopsy!  A nice break in our travel schedule, especially with DH being in Michigan for work for six weeks!

Despite this good news, we also have to add another appointment to our long list of medical appointments we have for her.  The GI docs referred us to an endocrinologist to see if there may be some hormonal cause of her lack of growth.  She is on the low side of caloric intake, but not low enough that they thought it should cause her to be as small as she is - and she is small in both height and weight - she is proportional.  So, we have a pediatrician appointment on Tuesday and will ask him to refer us to someone at UC Davis so we don't have to drive to Stanford for those appointments.  Hopefully we can find someone there and will not have to add another trip to Stanford to the mix. 

Other than that, she is loving her weekly therapy through the Far Northern Regional Center with Angie.  She gets to play with all the toys that Angie brings in her big bag of toys and she is learning to put things back "in" to containers (versus just taking them out), to put pegs "in" holes (versus just taking them out), stack items, etc.  And she gets to play with bubbles, wood puzzles, and other cool toys.  Angie is fantastic and I can't say enough good things about the Regional Center here in the North State.  Bean is also getting physical therapy twice a month, but she seems to be quickly surpassing the goals they had set for her a few months ago.  She is climbing stairs (a little too well - had to put up a baby gate), cruising along furniture, crawling like a speeding bullet and has even let go to stand unsupported a couple of times.  Very exciting changes!  She is not talking at all yet - but, lots of babbling and a few things that sound like words - "up", "dada", "mama", etc.  But, she doesn't have a lot of purpose tot he words, so I'm not sure if she is really talking or just babbling more.

We are looking forward to summer in Chico.  There are a lot of fun things to do here during the summer and I plan on taking advantage of as many as possible.  There are movies in the park once a month, a family fun fair in one of our local parks each month (moves around from neighborhood park to neighborhood park), and of course the Thursday Night Market and Farmer's Market on Saturday mornings...and I am now part of the Chico Mothers' Club and we have a weekly playgroup, monthly bunco, and a lot of fun "field trips" for kids.  So, I'm planning on keeping busy this summer and taking advantage of my first summer with Bean out of a hospital and in our fun town!

First thing on the list of fun is a visit from our good friends from Arizona!  They come in on Monday and will be here for the week.  This means I need to finish reorganizing the guest room (which is a chaotic mess right now) and getting the house tidied up a bit, finish the laundry, and get stocked up with snacks, etc.  I'm looking forward to their visit and enjoying a little "stay-cation" while they are here.  There will be a trip to Lake Almanor to golf (well, I won't be golfing, but will be enjoying the scenery) at Bailey Creek Golf Course, an Oakland A's Game, Thursday Market, maybe a Chico Outlaws game, and of course some BBQing!

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