Tuesday, October 4, 2011

We're the lucky ones...

Driving the 12-passenger...let's go people!
Sometimes it catches me off guard.  I catch a glimpse of her smile or hear her laugh and I am amazed at how lucky we are to have her.  This becomes especially acute when I read about other heart babies or transplant recipients who are struggling with health issues or financial issues or insurance issues.   We are truly the lucky ones...I just like to publicly say that every once in a while to make sure everyone knows that I realize it...even if I don't always sound positive about things.  My last post was kind of a downer, so this one is aimed at turning that around a bit!

Last week we had our heart clinic visit and I am happy to report that all was looking good.  Bean did not enjoy the appointment by any means - there was much tears and "go home"s, but we made it through.  Her echo looked good, she is now officially on the charts for both weight and height (albeit, 3% for height and 8% for weight, but hey, its on the charts!), and her pulse ox was 97%.  Her BP was a bit high, but understandable with all the screaming and carrying on she was doing.  I thought she may be a bit better because she has been using her doctor's kit at home and taking our blood pressure pretty regularly, but it just wasn't the same.  So, I think the BP was not very accurate of what she usually is.  We have to schedule the next biopsy - probably for around Thanksgiving - and we had to go up slightly on her prograf because her count was a little lower than they like to see it.  We will get another blood test in another week or so to see if that fixed the level or has overshot their goals.

About town in Chico...she is ready and set to go!
Other than that, she has been insanely into sea life ever since our vacations to the aquariums.  She used to be in love with starfish and although she still likes them and jellyfish, her new favorite is what she calls the "bat ray!"  Its really more like a manta ray, but she calls it all rays "bat rays!"  I put the exclamation point there because she really can't say it without exclaiming it.  She wants everyone to draw them (I have become pretty decent at it if I say so myself), she wants to see pictures of them, she would like to have books about them.  I have found a few books at our library about sea life that have pictures of rays and entire books about starfish and jellyfish, but she would really like an entire book about "bat rays!"  We'll keep looking...in the meantime, she watches a documentary on American aquariums that I found on Netflix quite regularly and exclaims "bat ray!" every time one appears on the screen.  She's just a little bit obsessed...

We are in the second season of Music Together class and she still loves it.  The first class was a bit traumatizing for her because she, like her father, is a creature of habit.  She did not react well when the "marching song" was not played and the instrumental we play instruments along with was not the usual "twinkle, twinkle".  The songs change for each season and she had become quite infatuated with the routine we had established with the old songs.  So, she cried.  She screamed "MARCHING SONG!" repeatedly during another song.  She cried some more.  She whined "twinkle, twinkle?" during the new instrumental and refused to play an instrument.  It was quite dramatic.  But, the instructor of the class is awesome at handling the less-than-perfect behavior and was very understanding (thanks Tanya!) and she made it through.  We had a little talk before the next class about how the songs might be different, but we could still march and gallop and play instruments, just to different songs and she was much better the second and third classes.  She asks pretty much everyday if we are going to "masick" class, so she obviously loves it, marching song or no marching song!

The last thing I will say about Bean is that in the two years since she came home to Chico with us (can not believe it has been two years...where does time go?), she has been a true joy for us.  She is a source of constant entertainment (even more so now that she can tell stories...which are often hilarious and totally embellished with dramatic plot lines not based in reality), constant love (my favorite is when I pick her up to carry her upstairs to bed and she sleepily pats my back as if to say "good job Mom"), and constant adventure (a trip to the store or even a ride in the car becomes an eye-opening experience when you have a two year old along for the ride).  She has started to fall in love with game playing - she "plays" Yahtzee! - which to her means rolling the dice and then turning all the die over to the five and then saying "mommy, mommy - look!" and I say, "Wow -you got all fives!  That's a Yahtzee!" and she says, "Yahtzee!" and we start all over again.  She also knows what the name of the little gray figure is in Settlers of Catan (the robber, for those who don't know) and she knows that Daddy always plays with orange (when he was gone, someone else played with orange and she pointed to the pieces and said "Daddy's").  Her new favorite shows (other than the aquarium documentary) are Caillou and The Wiggles (which is actually an old favorite that she has brought back for an encore).  She still loves Max and Ruby, but seems to have lost some interest in Mickey Mouse Clubhouse (although she still loves her Mickey Mouse books and her Mickey and Minnie stuffed animals).  She still says "songs!" every time she gets in the car, even though I think I'm the only one who liberally gives into the request each and every time.

Even though I haven't had any kids before her, I know these are special times that will soon be gone.  In their place will be other special times, but none exactly like these.  So, I'm trying to savor some of these times, commit to memory some of the funny stuff that happens and live for the moment as much as I can.  I don't want to miss out on anything, and although I'm looking forward to the future pre-school years, these toddler times are pretty hard to beat!

Thanks to everyone who has followed Bean's story thus far and continues to read.  Thanks to new readers who have hopped on to hear a story or two.  It really is something special to have her around and I don't take that miracle for granted...not for one day, not for one hour!  Maybe for a minute or two every once in a while...no one's perfect!

And, Six Years Later - Marking the Good Times

Hello!  Long time no write on this blog.  I have always included a link to this blog on my email signature to keep people reading Bean...