Monday, December 12, 2011

Meet Me On Monday

I spend most of the blog posts on here talking about Bean.  But, I decided to join in a little blog hop meme - "Meet Me on Monday," and write about myself instead.  I don't know if I will participate every Monday, but I have seen it a few times and thought the questions were kind of fun.  So, here goes:

1.  Tomorrow I'm going to _____________________.

Give my second final, among other things.  I have office hours at 5 p.m., but I need to get some grocery shopping done. I would like to make some cookies.  Bean has of her last sessions, which I'm very sad about.  I also need to do some more cleaning around the house - the place has been a disaster pretty much since we brought our Christmas tree home and displaced a whole bunch of stuff for which I still have not found places.  I also have found some really cute Christmas crafts to do with Bean, but that may have to wait for later in the week...

2.  Pudding or Jello?  Definitely jello.  I like pudding okay, but jello is just better!

3.  What book are you currently reading?  I'm actually reading two.  The first was a book club book from about six months ago that I finally started and really like so far.  It's called "Angry Housewives Eating Bon-Bons" and the title does not do it justice.  It is about a book club in the early 60s and the lives of the women are fascinating and I love the book choices within the book.  The other I just started and is called "The Plato Papers" and is very strange but intriguing.  Somewhat post-apocalypse, somewhat philosophical, and sometimes kind of funny.  Hopefully I will finish them both before the year ends!  My book total for 2011 was pretty disappointing.  I would really like to read and finish more books!

4.  What is the first concert you went to see?  My dear sister (Aunt Dawn from a previous post) took me to see Bruce Springsteen on his Born in the USA tour.  I must have been a sophomore or junior in high school. Our seats were far, far away, but I still thought it was awesome.  

5.  What is your current weather?  To me, its cold, cold, cold.  But someone told me today that they were visiting family in New Mexico last year and it was 26 below zero!  What?  Its in the 30s at night here and gets into the low 50s at points during most days.  But, I lived in California my whole life, so I think its cold!  So far, not much rain though - which is a little unusual.

So, there you have it!  If you would like to participate in the blog hop, you can go to Never Growing Old's blog and get the link up information!

Wednesday, November 23, 2011

Thankful Thursday: 3 West, Lucile Packard Children's Hospital

We're back.  We have been lucky enough to stay out of the hospital since January of 2010, which for a young heart transplant recipient, seems to be a minor miracle.  But, our hiatus is over and we are back on "3 West" - or as those in the PICU and CVICU know it, the "step down" unit.  We are in the room next to the room we were in when Bean came here post-transplant, and I had to catch myself from walking to that door instead of our current room the first night.  Because although it seems like a long time since our last visit, it also seems like it was just yesterday.  Some of you may already know why we're back here because you are facebook friends of mine, but for those of you who aren't, let me give you a quick fill-in:

Bean had her regularly scheduled biopsy Tuesday morning to check for rejection.  Everything seemed to go very well and we were discharged around 12:15 p.m. and headed out to the airport to pick up my husband, who was flying in from a business trip in Chicago.  By the time we had done that and been on the road for about 45 minutes, she threw up all over the back seat of the car.  We stopped quickly at the next exit (again, my sister Dawn took one for the team - it was her car and she had gotten up at 4:30 a.m. to help me out by driving and going to the biopsy with me...what a thanks that is we gave her...) and cleaned it all up and changed Bean's clothes and were back on the road.  We got to my parent's house about 25 minutes later and gave Bean some water and tried to calm her down.  I noticed then that she felt quite warm, so we took her temp and it was right around 101.5!  The discharge sheet for biopsies say to call them if they develop a fever over 101, so we called.  After a few calls between the heart center, the surgeon and the transplant team, we were told to head back in for overnight observation.  She threw up twice more before arriving at the hospital. Since then, we have found out she has pneumonia and we will be here until at least tomorrow.  So, our Thanksgiving 2011 is being spent in "3 West" of Lucile Packard Children's Hospital (LPCH).  We are very thankful for LPCH, but not very thankful to be spending Thanksgiving here!  The real kicker is that my JP (my husband) has gotten sick (cold) and can't come to the hospital now because this wing is full of immuno-compromised kids.  So, I am at the hospital with Bean solo today.  A good friend was so good as to bring by Thanksgiving dinner from Boston Market for me at lunch and the hospital has a special dinner for Thanksgiving tonight as well.   So, I'm well taken care of food-wise and it was great to socialize with someone who isn't two years old and whiny and sick!

"3 West" is an interesting place.  As I said before, it is the step down floor for the PICU and CVICU, so there are always a number of transplant patients - new recipients, those waiting for transplants and those like Bean who are in here a number of months/years post-transplant due to other complications.  There are also those with surgical heart repairs healing, lung and respiratory issues, and other medical issues.  There are very small babies all the way up to teens.  There are very vocal patients (not unusal to hear the belligerent screams of toddlers or preschoolers dealing with nursing visits, needle sticks, etc.) and very quiet patients.  There is constantly traffic through the halls as a lot of patients are told they have to walk around in order to get discharged.  Many are dragging IVs or carrying drainage tube containers or feeding tube bags.  Some are being towed around in red wagons by parents and still others are being carried by parents.  Many are wearing masks due to their immune systems being compromised.  I must say that most people look exhausted.  It is exhausting on this floor.  In the PICU and the CVICU, the nurses are assigned one, maybe two patients.  Here, they are typically covering two or three rooms and their job is to make sure that parents and caregivers are ready for what they will experience at home.  So, they encourage parents and caregivers to do the work - feedings, diaper changes, giving medicine, etc., but they are having to do a lot of training.  And there are sleeping couches in each room because unless you have a very good sleeper and/or feel comfortable with the possibility of them crying or being uncomfortable until the nurse checks on them (versus the nurse being in the room with them as in the CVICU or PICU), you really need to plan on being here overnight.  Its not a great place to sleep, but it is better than a chair.

I never sleep really well when I'm here because there are constantly people in and out of the room or Bean wakes up and cries a bit, and I feel like I need to comfort her immediately (how horrible it must be to wake up in this room with an IV in your arm and now oxygen in your nose?).   So, I'm up and down all the time.  But, the nurses are usually very nice.  They try to be as quiet as possible when entering, doing their work ups and exiting.  The first night, the nurse brought me cookies.  They always ask what they can get for you.  So, although they are training you for dealing with the realities of your medical situation once you leave the hospital, they are very supportive and nice about it.  And with us, there really isn't any training going on, because we have our routines down for giving meds and I've dealt with just about all the possible things (keeping diapers for weighing, keeping track of liquid and food intake, where the extra blankets and pillows are located, what all the machines are and what the different alarms mean.  The only thing I had forgotten is how to disable the alarm on the IV machine, but that has now been refreshed!

Overall, LPCH is pretty good place to be if you have to be in a place like this. I'm thankful this Thanksgiving that we are lucky enough to have a team of doctors and nurses looking after Bean's health and although I would much rather be visiting my in-laws this week and eating too much for my own good and then eating more...I am happy that we have access and ability to have Bean here and to be sure that her health remains as good as it has been.  We hope to go another two years (or maybe even more) without an overnight stay in 3 West, but if it turns out that we have to be here again, we will accept that.   Taking care of Bean's health  is priority number one for me.  And this place seems to do it right.

We did get some great news today while sitting in this hospital room - the biopsy result was another zero!  That was two in a row now...for the first time since transplant!  This could mean that Bean's immune system will be weaker (since it is a sign that the anti-rejection drugs are suppressing her immune system a bit more effectively now).  Which means we will have to be a bit more vigilant when dealing with any health issues around our house.  But, we'll take that...and take the zeroes!

Hope everyone out there had a good Thanksgiving!  

Friday, November 18, 2011

Fantasy Land Friday - From Transplant to Triathlon

I originally came up with the idea of a Fantasy Land Friday post to identify all those things I wish, hope, yearn, and/or envision for my life. For instance, a clean house or a completed to-do list. Anyways, you get the idea. But, this first Fantasy Land Friday post will focus on something a bit different. I don't spend a ton of time thinking about Bean's long-term future. I don't know if that is normal or a result of fear or denial or just the result of my seeming inability to plan ahead for anything. I also think that its difficult at this point because she's only two and I don't know what her interests or talents are yet. But, I'm sure that part of it is fear of the future and what it will bring.  Because of that, I love stories like this one:

Transplant recipient in second Ironman - Sherwood Park News - Alberta, CA

There are a few things I love about his story.  First, his transplant was back in 1986, which is pretty early in the transplant history, so long-term survival was usually predicted to be shorter than today.  He says that they gave him 10 years, and now, almost 30 years later he is competing in Ironman triathlons!  The second thing I love about his story is his willingness to be a "guinea pig" so-to-speak for figuring out the amount of stress a transplanted heart can take.  I would love for Bean to do sports - not necessarily Ironmans, but some kind of sport and if she decides she wants to do a sport seriously, I would love for her to have confidence in being able to do that.  The last thing that stood out for me was his recognition that many recipients never get the chance to meet their donor family.  The media typically covers stories that include both the recipients and the donor families.  Everyone asks about the donor...and its strange to know absolutely nothing...and hard to explain, but totally understandable from my perspective.  But, perhaps at some point in the future, we will come to know more even if we never meet the donor family.  And even if we never know more, I will always hold that family and their angel donor in my heart.  And I will try to make sure that Bean does the same.  I could not help but think that a boys suicide 30 years ago has given this man a chance to do amazing things and something that seemed hopeless and senseless has become something so full of hope and so meaningful.

So, here is something inspirational that I will definitely have Bean read in the future.  Its a great story - hope you enjoy it as much as I did!

Thursday, November 17, 2011

Thankful Thursdays - Aunt Dawn

Taking Starfish and "Bat Ray" out for a stroll.
Above is Bean, last weekend, with the stroller she conned my sister into buying for her while looking for shoes and the rubber starfish and manta ray they got at Michael's.  My sister, Dawn, was taking care of her so I could travel south for a speech and debate tournament.  She was supposed to be going with me, via car, but we had a rather traumatic end to that idea - which included Bean being locked in a car for about a 1/2 hour, having to be removed by AAA coming to pop the lock.  Embarrassing, yes.  Not as scary as it might sound because Bean loves to drive the car, so she spent most of the 1/2 hour doing just that, snacking on yogurt snacks she pulled out of a bag I had packed for her, etc.  She got a little upset towards the end, but overall she handled it relatively well.  I, on the other hand, had a slight breakdown after we got her out and decided I couldn't really deal with the drive to Southern California.  So, my sister volunteered to keep her for the weekend.  

Dawn has been a lifesaver this year.  With my travel schedule often colliding with Jason's travel schedule, and Bean being at an age where hanging out at a speech and debate tournament all weekend is not all that exciting, there has been a number of weekends where we needed someone to watch the Bean.  And it makes it nice that Bean loves Aunt Dawn - they go to the park, lots of walks and she usually gets to go see Grandma and Grandpa (my parents) while visiting her, they've gone to the zoo, the insect museum at UC Davis, and lots and lots of parks.  I realize that Bean is not an easy child to take care of - she takes multiple medicines multiple times every day (she is much better at this - she often gives them to herself with a little help now), for a while she was snoring like a chainsaw during the night (this has also gotten better - we now think she had a bit of a respiratory infection because once she got on antibiotics, she is sleeping so quietly we often have to check to make sure she is breathing regularly), she is about as belligerent as they come (she is in that stage where she says no to everything - and she has now taken to throwing things when she gets frustrated).  But, Dawn has never complained.  She always says she is good.  She never says anything about her not sleeping well or hogging the bed or kicking her while she is sleeping.  She deals with the fact that I am often an organizational mess and forget a coat or the right shoes or pajamas.  And she never asks me for anything in return.  Its really something that I don't take for granted.  It makes my life so much easier than it would be if I had to take her with me to all these places or find child care for a whole weekend.  

So, today, in honor of what I will call Thankful Thursday, I would like to thank my sister for all she does and all the love she showers on Bean.   As Thanksgiving approaches, I have been thinking about the many, many, many things I have to be thankful for, but this one really jumped out at me as I looked at the picture of Bean above.  So confident, so happy...with the stroller, starfish and bat ray that Aunt Dawn got for her while spending a weekend taking care of her to make my life easier.  Thanks doesn't go unnoticed!

Monday, November 14, 2011

Life is hard....dinner shouldn't be! (Review)

I am constantly struggling with time.  Time to get my work done.  Time to spend with Bean.  Time to do things that I like to do.  Heck, some weeks, I struggle to find time to take a shower!  Because of that, and a little bit of being intimidated by cooking, I am a huge fan of convenience foods.  I often teach classes in the evening or even late into the night and having something quick to fix when I get home is a great benefit.  So, I was excited when I was asked by SocialMoms to test out a new Smart Ones product from Weight Watchers and blog a review! 

I've eaten Smart Ones boxed meals off and on for a while, so I was surprised when I saw the packaging.  The new Smart Ones Satisfying Selections come in a steam-in bag.  Its a pretty large size (see the 30% larger serving note on the packaging) and although the varieties are currently a little limited (there are five varieties available), all of them sounded delicious to me.  I received coupons for two free bags and I chose the Ziti with Meatballs & Cheese and the Chicken Teriyaki Stir Fry.  I was excited to try the Ziti as the picture looked cheesy and had numerous meatballs.  The ease with which I was able to heat it up in the microwave was GREAT!  There was no stopping in the middle, lifting the plastic cover, stirring the product and placing it back in the microwave, only to find that I didn't stir enough so the middle was cold and the outsides were burnt on to the edges.  Instead, you just place the bag in the microwave with the steam side up and start it, not having to stop until its finished.  No stirring.  No dealing with unevenly cooked food.  Just place the bag in the oven and let it steam!  It was, by far, the easiest cooking of a frozen meal I've done.  And I've cooked my share of frozen meals!

Now, I don't know about you, but often the pictures on the packaging for frozen foods are about as close to reality as the shows I watch with Bean on the Sprout network!  They look so appealing when you pull it out of the freezer, but once the box is removed, all appeal is lost.  That was not the case with the Smart Ones Satisfying Selections.  The ziti came out looking like fresh pasta, there were tons of meatballs and the cheese was plentiful as well!  And the taste was very good as well.  I have to admit that I was starving when I made it, which I suppose could influence my opinion of the meal.  But, the meatballs were tastily seasoned, the noodles were soft and fresh and the cheese was plentiful.  It wasn't the best ziti I've ever had, but it is definitely the best tasting frozen food pasta entree I've had.  And again, I've had my share of frozen meals!

I had the Chicken Teriyaki Stir Fry the next day for lunch.  It was also tasty, although not quite as good as the ziti.  The flavor was not quite as good, but the chicken was plentiful (increased protein portion is one of the perks of these selections), the noodles seemed fresh and evenly cooked and there were quite a few veggies in the mix.  I just found the sauce to be a little lacking in taste.  

I have lost about 14 pounds since the beginning of Summer (thanks Hungry Girl) and I was also excited to have new options in the frozen dinner area.  It seems lately that the boxed varieties have shrinking entrees and just are often not that satisfying.  But, these meals are definitely larger (30% larger) and more filling than the boxed varieties I've had lately.  I had a slice of bread with the ziti for a late dinner and it was enough for me to not feel hungry.  The teriyaki at lunch was a pretty perfect lunch portion as well.  For those of you on Weight Watchers, the teriyaki chicken is a 9 point meal and the ziti is a 10 point meal.  Not bad for pasta dishes!  Especially the ziti, which I thought was quite cheesy.  

I would definitely suggest that anyone looking for a good frozen meal that won't kill you in calories to check out the Smart Ones Satisfying Selections! 

This post is part of a SocialMoms product evaluation, for which I’ve been
selected. I’ve been compensated for my time with 6,000 My SocialMoms Rewards
Points. The opinions expressed in this post are mine and don’t necessarily reflect the
opinions of SocialMoms or Heinz.

Thursday, November 3, 2011

Happy Halloween Week!

This is coming a bit late, so I'll call it Halloween Week.  I feel like a broken record sometimes, but I've had such a busy couple of months that I am feeling constantly buried.  Too much travel for work means no weekends at home to get caught up with things...a wicked, nasty case of strep throat followed up by a chest cold has not helped things...and seemingly a ton of things to get do get done in our personal lives.  Its all a bit much sometimes.  But, I seem to have been able to fight off the latest cold and Bean has amazingly not caught any of the bugs that have been moving through my classes, team and our home!  Thank goodness.  

As you can see from the picture, Bean went as a purple butterfly for Halloween this year.  She refused to wear her antennae, so she looked more like a ballerina with wings, but it wasn't worth the fight.  She loved trick or treating, saying "more candy" after we left each house.  It helped that we don't have many trick or treaters in our neighborhood so people were more than happy to give her multiple pieces of candy.  She doesn't really eat the candy, so I'm not sure why she was so demanding of more, but she loves to dump out her bag and look at all the different kinds of candy she has. And the pile is slowly disappearing, thanks to those of us around the house who would rather eat than look at it!  :)  

Bean is very much into Music Together class right now.  We dressed up at the last class and the kids were all very cute.  Here is Bean during the instrument play part of the class:

We missed out on the downtown Treat Street festivities because she fell asleep on the way there and proceeded to nap for two hours.  Oh well...maybe next year.  She also refused to have her picture taken with the extremely cute backdrop the Chico Mothers Club had at the Halloween Party.  Sad, but true.  

I can't believe it is November already.  I have the Great Debate all day tomorrow at City Council Chambers, we go to Northridge next weekend for our last tournament of the semester, and then the Rookie Tournament and Nervous Novice Tournament on campus the first weekend of December.  I'm exhausted thinking about it, but such is life.  

I am looking forward to the week off for Thanksgiving, but Bean will have her biopsy at Stanford on Tuesday of that week, so it won't be a total week of peace.  Hopefully things go smoothly for the biopsy and she isn't too upset by the whole experience.  We still haven't settled on a plan for Thanksgiving and Christmas and where we'll be and for how long...another challenge to figure out in the coming weeks!  

I hope all of you had a fantastic week, whether celebrating Halloween or just getting ready for the coming holidays!  Its just starting to get cold (and maybe even some rain) here.  I'm ready for the season change - looking forward to dressing warm, watching all the leaves turn, and even some rain!  I'm sure I will be complaining about it in a few weeks, but for now, the change sounds good!

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 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 one's perfect!

Monday, September 19, 2011

Loathing Fear in Chico

Here is a great picture of Bean at the park this morning splashing in the water that was pooling up in the bottom of the giant sandbox.  It has a faucet up on top of a little hill that sends water cascading down the rock structure and into the sand below.  She absolutely loved it.  And although it was a bit warm today for the month of September (9 degrees over the norm I heard), it was a great park visit.  I thought we were in for a great day.  Boy, was I wrong!

I had to return the rental van from this weekend's debate trip, which meant moving Bean's car seat from our car into the 12 passenger, driving to Enterprise and sitting around for about a 1/2 hour waiting for a ride home.  Bean was actually really good during the wait, but it was still a wait I could have done without.  Especially when my phone died as soon as I sat down, so I couldn't access email or get anything done while I was there.  We finally got a ride home and I really thought that Bean would take a nap, but it just wasn't in the cards.  It seems more and more that she goes without a nap unless she is driven somewhere for a long enough time that she falls asleep.  Which happened a couple of hours later when I was taking her to Kids Park to drop her off.

Last time she was at Kids Park, I left her there for a longer time than usual (about 4 hours total) because I had two work meetings in one morning.  She attended their pre-school from 9 - 10:30 am and that went well, but afterwards, during open play, I guess she was running and bumped heads with another kid and just lost it.  I got a call as I was going into my second meeting saying she was crying and could not be consoled and asking what they could do.  Since I was on my way into a meeting, I was caught off guard and could think of nothing.  Great mom, huh?  Can't think of one thing that consoles my child.  Well, I actually thought of the bottle, because that definitely consoles her.  But, because we have gone to only three bottles a day, I had not taken one with her because her afternoon bottle is not due until 2 p.m. and I would be picking her up at 1 p.m.  I also had forgot to pack a pacifier or any other comforting item.  So, she cried and screamed and threw things I guess.  She finally calmed down after about 10 minutes and she was fine when I went to get her.  BUT...she has a memory like a steel trap and once something settles in there its hard to get rid of it.  So, she has been whining a bit every time I bring up Kids Park.  I really should have known better, but I thought she would get there and realize how fun it is.  I also knew she was super tired today, but I had no other child care options and needed to go to work.  So, I dropped her off about 3:20 pm and headed into work for my 4 p.m. class.  At about 3:45 pm my office phone rang and I immediately recognized the number as Kids Park.  My heart sank...

Sure enough, she had got upset about being left there (even though when I left, she was happy to see me go and gave me a kiss and said good bye...20 minutes earlier...).  This time though, she cried so hard that she made herself sick.  This has been a Bean trait since early on in returning home from the hospital.  It kept me from making her sleep in her crib - the cry it out method made her puke.  And really, she would cry hard enough to throw up even if I was sitting there and just wouldn't pick her up.  She has thrown up in her big girl bed a couple of times from crying so hard.  If I sit and blow in her face repeatedly when she gets that upset, I can usually stop the regurgitation from happening.  But, you can't really make that part of your day care instructions - right?  So, I left work - at first panicking because I thought she was really sick.  I mean stomach flu would be disastrous right now, and she has been sleeping really poorly the last couple of nights.  So, I thought the worse - because FEAR is a constant in my life.  Although we have been incredibly lucky in her not getting sick at all since the transplant (knock on wood), she is on immuno-suppressants and she has not had her flu shot yet this year.  So, I panicked.  It could have also been the fact that I went to bed at around midnight last night and woke up around 5:00 a.m. this morning, with a wake up scream/cry or two from Bean in the midst of that five hours.  I swear that R.E.M. is only a band name from my youth and not some type of restful sleep that I reach every night.  I feel as though sleep deprivation may be reaching extremes...and the exhaustion makes me act like a hormonal crazy person.  So, I cried, cancelled class and went to Kids Park to get her.  She was still crying when I arrived.  Her face was puffy and red and she was clearly miserable.  But, she had no fever, she was breathing fine and she immediately perked up when she saw me.  She complained of her ear hurting when we were walking to the car, said that she didn't want me at work, and promptly said she wanted french fries.  At this point, I am definitely not happy.  I feel guilty - why didn't I just hire her babysitter to come over - who she loves?  To save $2.50 an hour?  To "socialize" her, when I am convinced that much of that socialization is just teaching her bad habits like screaming, saying no defiantly or "mine" constantly?  Really, I kind of thought it was a fun place and she seems bored at home so much of the time.  But, I think Kids Park is off the list of places to leave her for a little while.  I just think she's going to be slow to reach a certain level of independence.

And, I guess that's okay.  She was, after all, laying in a hospital bed hooked up to machines and unable to be held or cuddled or loved on for almost the first five months of her life.  But, every time I hear myself saying that or read it as I write it, I think I sound like one of those crazy people who justifies their ridiculous actions by saying that it is because of something that is really not related to the other thing.  I mean, what if the crying until she throws up is just a thing she does because she knows it allows her to get her way?  It seems really extreme...and when she is in the midst of one of these episodes, she really does look uncontrolled.  She looks like she can't stop crying and is really in the middle of something painful.  So, I can't imagine that she does it on purpose.  But, heck, I could just be taken for a ride.  Who knows?  All I know is that I still have the FEAR in the pit of my stomach anytime she even seems like she may be getting sick.  And I LOATHE that FEAR!  But, its not going to go away.  It will never really go away.  Its kind of like a toothache that is always there, but you get so used to it that it doesn't bother you until something cold hits it and then its this shooting pain that is unbearable for a temporary period.  Today was something cold hitting that dull fear and it became unbearable for a temporary period.  But, now its over and we're back to the normal dull fear - we'll go to the eye doctor tomorrow and visit the pediatrician just to make sure nothing serious is going on and next week we'll go to Stanford for clinic and I will hope and trust that everything will come back fine and we will continue on. But, that fear is still there.

Another family that is on a pediatric heart transplant email list with me got a shot of that sharp pain today and it won't be as temporary for them.  Their son, who is now 13, received a heart transplant as an infant and now needs not only a new heart but a new liver as well.  My heart goes out to them...I can relate to their pain.  And I dread the day that I will have to deal with something similar.  And maybe we never will - maybe our luck will hold out and Bean will keep this heart for 20+ years.  But, I guess the point is, we won't know...

Anyways - she is doing well now and I think she is really healthy.  I think just like she is growing physically a bit more slowly than others, she is also growing emotionally a bit more slowly than others and she has hit her point of separation anxiety.  She has also started to show some signs of the "terrible twos" as she gets closer to her third birthday.  So, we may just be running a bit behind schedule with some of these typical "milestones" the parenting books and magazines talk about.  We shall see.  But, for now, we'll just keep on dancing...

Monday, September 12, 2011

Things I Love About Chico #1 - Fantastic Foodiness

Today's post is a bit of a departure from my posts as of late.  I am going to try to increase the number of posts on the blog as well as the diversity of posts - so, if you only read to follow Bean's story, you can skip this one as she is but a bit player in today's post (there are some pics though - she loves to have her picture taken, so its inevitable).  But, I will continue to cover her health care story...I will just be writing other things in between.  I'm going to attempt a blog schedule and my Sundays (when I post on Sunday) will be Things I Love About Chico posts.  Simply because I love Chico and its a good way of introducing my readers to some of the things we get to experience up here in the Northern Northern California area! 

I am getting ready to head out to my third Taste of Chico.  For those unfamiliar with this type of event, let me explain.  The city's (and surrounding area's) restaurants, caterers, stores and other businesses set up a booth on downtown streets and provide small "tastings" to ticket holders.  You buy pre-paid punch cards for so many food and drink tastings and the vendors punch them as they provide your tastes.  In addition to the food, there is a beer/wine garden for adult beverage tasting, bands playing all day in multiple places and a lot of coupon/discount offers from many vendors.  Its a really fun and tasty day and you get to sample some food that you might never otherwise know about.  I discovered one of my favorite Chico foods at Taste of Chico two years ago - Bacio's catering and their BBQ chicken or pork sandwich!  I've now eaten multiple things at Bacio's (which has a counter service as well as catering) and all of them have been fantastic - but without Taste of Chico, I may have never eaten there!  This year will be especially nice because it isn't horribly hot (it has often been in the 100s, but right now it is high 70s and at the peak today it will only be 92), which will make the whole experience much more enjoyable!  I can't wait to make a new discovery this year!

Speaking of new food discoveries, I have been participating in Upgraded Living's "Secret Menu" challenge and so far it has been a blast!  Basically, the challenge is to visit 18 local restaurants in the month of September, order the "Secret Menu" item listed in the magazine (some are not actually secrets, but are just the hidden gems on the menu), take pictures and post them on the magazine's Facebook page.  They are giving away $50 gift certificates to each of the restaurants and a $200 cash prize to one participant.  So far, I think I've been to the most places, but its still relatively early in the month.  But, it has been a lot of fun to try new places and new items at old places.  It is amazing how a relatively small city like Chico has so many great places to eat and so many hidden little places around town.  I think I'm close to being half way done with the 18 places and so far there has really only been one thing that I would not get again - and it is not a reflection of the restaurant, but the fact that their item was a gluten-free pizza, which wasn't bad, but not having a gluten allergy, I would prefer my usual pizza crust, thank you!  But, its nice to know there is a pizza option for those with gluten allergies in town!  I have gone to three new places due to the challenge (Donut Rising, Farm Star Pizza and Left Coast Pizza) and ordered a bunch of new and really good items at places I had been before.

Because of these food adventures, Bean has tried some new foods as well.  She really liked the donuts

 and very much enjoyed the dough on the pizza from Farm Star Pizza.

I have always loved the food choices in Chico, but this is bringing me a whole new appreciation for the variety and quality of food here!  Thanks Chico!  I'm not a foodie, but I love food and Chico is perfect for a food-loving non-foodie like me!

Finally, the last food thing I love about Chico is the Saturday Farmers' Market.  Its a year round farmers market with lots of great produce, some specialty food items and great gift possibilities from local artisans. This past weekend, my friend Theresa and I took some photos to give you a "taste" of this local event.  Enjoy!

Friday, September 9, 2011

Milestones Met as Time Flies

September 2009
It sometimes seems like a lifetime ago that we were finally coming home from the Ronald McDonald house in Stanford to a new (to us) home in Chico and life was becoming a new normal.  It wasn't too long before the developmental therapists from our Far Northern Regional Center began to visit once a week.  For Bean, it was play time - she got to play with different toys, sing songs and have someone devote 100% attention to her for an hour.  She loved it.  Our first therapist was pregnant and went on maternity leave...and we were sad.  But, her replacement ended up being great as well and new toys were introduced and the attention was still there, so Bean still loved it.  Watching the therapists was also a benefit to me.  I learned the developmental milestones they were looking for, I learned the toys and activities that would help Bean reach those milestones and I soon acquired toys that worked on the same skills. I wouldn't say that I "worked" with Bean on the skills, but I definitely "played" with Bean in the hopes of her reaching her goals.  And every report, she got closer and closer to her adjusted age (because of her being a preemie, she was adjusted to her gestational age).  

Well, as Bean's third birthday draws nearer (how did that happen?), a bittersweet realization was reached last week as her latest evaluation was being performed.  Bean has officially "caught up" - she is considered normal in almost all areas of development (she is a bit behind in fine motor skills and self-help skills, but these vary greatly by age, so it isn't considered to be a problem as long as they are close to their age)!  At three, the Regional Center transitions clients into the local school district.  But, we will not be transitioning because Bean is now not in need of additional services.  I say bittersweet because the attention and the training was great to have.  I think it really helped me help Bean and to cope with some of her challenges in a constructive way.  I was not afraid to challenge her because I saw her being challenged by someone else and saw her enjoying the challenge.  That confidence is harder to find on your own, I think.  But, I am so very thankful that she has been able to catch up - physically (she is walking normally for her age and she is even on the growth charts for weight now - 3rd to 5th percentile), linguistically (she's actually ahead in this area - not totally shocking since her parents are debate coaches and she spent a considerable amount of time, once out of the hospital, at speech and debate tournaments and even a two week debate camp last summer), and developmentally.  I hear/read so many stories from other families whose children are struggling because of their time in the hospital, their time on the ventilator and their time with a lack of full oxygenation from their heart problems.  We have truly been blessed with Bean rebounding from all those things in a relatively quickly and almost surprising way.  And for that, I am eternally grateful.  

I can not believe that we came home from the Ronald McDonald house almost two years ago!  Those first few months were a blur, but I still remember the incredible feeling of being able to dress Bean up in her flower costume and answer the door for Trick or Treaters in our own home:

In some ways, this seems like a lifetime ago - she has changed so much and done so much.  But, in other ways, it seems like not that long ago.  Last year, she traded in the flower costume for a cow costume and looked like this:

Which is not that dramatic of a change from the previous year...but, here she is a few weeks ago while on vacation:
The star of the show in Gigi's sunglasses...and the change from the previous year is pretty dramatic!  In two years she has gone from a teeny-tiny, tube-fed, broviak line wearing little girl to a now-just-tiny, food eating (and still three bottles a day drinking), line-free little lady!
And we are thankful everyday for her shiny, happy face (even when it isn't so shiny or happy).  She is loving life for the most part as a two year old and has not shown too many signs of the terrible twos yet (we're hoping THIS is not a developmental delay!).  She loves to talk, is really into starfish and jellyfish, can say "leopard shark" clear as day, and has fallen for Kipper the Dog (who can resist that adorable British accent?). She loves to play games, has a memory like no other (much better than mine now, which seems to be going downhill fast), is fascinated by bugs, loves loves loves her Music Together classes ("Songs!" is her first demand upon arriving in her car seat), is outgoing to a fault sometimes (I think she has scared other little kids more than once by barreling up to them and saying "hello" or "hold hand" if they are older kids), would stay in a bathtub overnight if it was allowed (but would demand "more water" intermittently during the night), and has just discovered a love for KidsPark.

Overall, I would say we're living a pretty normal life considering our daughter has a heart from another baby beating inside her right now...she takes medications (only five now) three times a day, she has to have an echocardiogram done about every two months now (something I have never had done in my lifetime - and probably something most of you have not ever had done) and a heart catheterization done about every four months now (something which terrified me the first time she had it done, but has now become quite routine) and we have to be careful of germs, especially during flu season (and flu season cometh...very soon).  Other than that, we're pretty run of the mill.  And that normalcy is pretty much a miracle!  Our miracle...

Sunday, July 17, 2011

Second Annual Heart Workup Tomorrow

Tomorrow morning we'll be at Lucille Packard Children's Hospital for Bean's second annual transplant workup.  This is where they do all the same things they do at all her other biopsies, plus they check heart pressures and for narrowing and/or hardening of the arteries.  The cath takes a bit longer than normal, so the recovery is also a bit longer than normal, which can make for a long day.  But, it does not require an overnight stay, which I am thankful for.  I am interested to see if Bean will be any more accepting of the appointment this time.  Last time, she was a real bear to deal with during the hour and a half of pre-op we have to do.  I am hoping she is a little less of an angry Bean tomorrow, but I am not holding my breath on that one!

I did an event in Oroville for the California Transplant Donor Network this week.  It was a health fair and I just stood at a table and encouraged those who were not registered to donate to do so and to thank those who are already registered.  I worked with a couple whose son was a donor 11 years ago.  Their story was so touching and they are truly amazing people.  Their son was only 24 years old and died of a brain aneurysm during his sixth month on the job as a police officer in Sacramento.  They are Latino and the dad said that when his son came home from the Police Academy and said he was going to register as an organ donor, he told him no.  He thought it was wrong.  His son told him about the speaker who had come in to talk about organ donation and that he felt strongly about it.  A little over six months later, his dad had to come to terms with that discussion...since then, they have met the recipient of their son's lungs and their son's heart.  And they are obviously huge advocates for organ donation now.  Their son was the first Latino in 10 years to donate his organs in that organ procurement area.  Since then, the numbers of have really gone up in that group, but their son was unique and his father has become a big advocate to honor their son's memory.  His father has also learned how to sew quilts and has made four quilts using the patches from law enforcement agencies all over the United States.  Here is a picture of us in front of the one he had displayed at the health fair:
They were incredible people and I'm going to begin collecting more patches for them as I travel around for Speech and Debate and other things.  If you would like to send me a patch from your local law enforcement agencies (police, sheriff, etc.), just let me know and I will get you my address and send them on to this dad. His quilts have traveled around for both law enforcement and organ donation and he plans to continue to make more of them.  They have inspired me to write another letter to our donor family as it took them five years to feel comfortable meeting the two recipients they have met...and they are so appreciative of the ability to do so.

So, we are off to the hospital tomorrow and although it won't be a fun experience, we are thankful to have that experience, as we are each and every experience we are able to have with the Bean.

Wednesday, July 6, 2011

Heart Birthday Number Two

Tomorrow marks Bean's second "heart birthday".  She was born on 2/19/09, but she received the gift of life on 7/7/09.  Last year we had a little celebration with balloons and cake, but this year, I am on the road visiting family, so we will probably only mark the day in a small way.  But, I wanted to be sure that I posted here and told everyone reading this to please say a prayer and give thanks to the family that so generously made the decision to save lives that day in July 2009.  I know that they will mark this day (or one in close proximity to it) in a much different way and I want to always remember that.  I am so thankful for each day I have with the Bean.  These last two years have been such a gift to us.  And I believe that Bean has been a gift to others as well, and I hope she will continue to have the bright and shiny personality she has currently.

Life for and with the Bean will never be totally easy.  There will always be the meds and the doctor appointments and the anxiety of facing the unknown.  But, life with the Bean will always be totally satisfying.  Knowing that each day is one she may not have had if she had been born just a decade before she was (because of medical advances that allowed them to keep her alive while waiting for a heart) or if the donor family had not chosen to donate their child's heart.  There will be the same frustrations that happen in any family, but in the back of my mind I will always know that those frustrations are better than no frustrations.  And although I can't predict the future and I realize that anything can happen, my intuition tells me (and my hope drives me to believe) that Bean will do wonderful things in her life.  I'm not sure what those things will be, but I can't believe that this great gift was given to her without it being meant for something great.

Yesterday was our country's birthday and Bean and I celebrated with my husband's family.  He is away in Michigan working this month, so he was not there and we missed him.  But, it was good to be with family and friends and celebrate the holiday.  Bean may have overdone it a bit:
This was at 2 p.m. in the afternoon!  She rallied for the evening, but didn't like the proximity or decibel level of the fireworks out in front of the house, so we retreated to the bedroom for a little video watching.  But, she definitely had a great time with family friends' kids, Aunt Sydney and Uncle Jeremy and Gigi and Papa!  She got to "drive" the boat for a bit, be the subject of many pictures with her new friends, and get a lot of attention!  So, overall, it was a great day for her!

Prior to coming to the in-laws, my friend Sylvia came to Chico for a visit, which was great (and that very patriotic 4th outfit the Bean is passed out in was from her!).  In an attempt to do something local and outdoorsy, despite the heat, we decided to visit a waterfall.  My original plan was to hike in 2 miles (easy, flat hike) following the  directions I found online.  But, when we pulled over at the marker for the waterfall, we found it to be right there, down a not-so-flat hill.  In the interest of saving the 4 mile round trip hike and getting some good photos, we decided to just brave the incline and see the falls.  It was a little challenging with the Bean and my dog, Bella, and Sylvia decided to stay up towards the top of the hill versus going on down where my friend Theresa and I went to take pics, but overall it was a great experience.  Bean has not stopped saying "waterfall" for the past three days and loves to see the pictures!  I will definitely have to put more waterfalls in future travel plans!

Tomorrow we leave my in-laws and head north, but not quite home.  I am participating in a new book club on Friday night in Berkeley, so we will be spending tomorrow, Thursday and Friday-day with my family in Davis/Bay Area.  Lots of family time for the Bean is great and it gives me a little bit of a break from being one of her only sources of entertainment (thanks to Theresa and the "winning" pool, she has been whisked away for an hour or more on an almost daily basis - I sometimes join them, but not always).  But, I will be very happy to get home next week again and spend some time in my own bed!

I will leave you with some pictures of the Bean, most of them in or around "wah-ter", which is currently her favorite substance other than formula - both to drink and to play in.  I grew up as a competitive swimmer, competing in my first swim meet at the age of 3 1/2.  I would not be surprised if Bean follows in similar footsteps, as she is already a pool lovin' fiend!  But, we shall see!  Hope you all are enjoying your summers and my heart will be with our donor family this week and always for giving us memories like these:
Excited to be leaving for the pool!

Looking like a little surfer girl!  Chico may be inland, but this is definitely coastal wear!

Drying out and warming up after her first swim in a "big" pool!

She obviously isn't the only family member who loves the water!

Relaxing a bit with Daddy before he leaves for work for five weeks!

Working on our summer gardening venture...

In the pool with Theresa...she has progressed to NOT wanting help when in her floaties!

Playing with her Busy Bugs set and lovin' it!

We have been busy bugs ourselves these past few weeks and summer is flying by (where did June go?!?).  We hope to get in a few more great experiences, reap the bounty from our gardening attempt, and even catch a wink or two of sleep along the way!

Thursday, June 9, 2011

Life With Bean...Long Needed Update

Hello out there!  Its been too long since my last post and we've done so much, I couldn't possibly cover it all.  So, I am just going to cover our most recent doctor's appointment in this post and then will try to do some backtracking for you this week.

Yesterday we had a heart clinic appointment at Lucille Packard (LPCH).  The appointment went pretty well considering Bean has now begun to realize that hospitals are not amusement parks and she is probably going to get poked and prodded.  We had to start off with a blood draw, which we usually try to have done here in Chico because the woman who does it here has the magic touch with Bean's somewhat belligerent vein...she can always get blood on the first poke without having to dig around.  At LPCH, amazingly, considering how large the Children's Hospital is there, we have to go to the adult side of the hospital and they always have problems.  The last time we went there, the woman dug around in one arm for about three minutes, never getting any vein and then proceeded to the second arm, dug around there for about the same amount of time before hitting any vein.  It was horrible.  This time was considerably better.  Thanks to the woman at Chico, I no know that one arm is much easier to find vein than the other, so I offered that one up and she did have to dig around a bit, but probably only for 60 seconds or so before hitting vein.  Whew...Bean was still screaming bloody murder the entire time, but it was much shorter than the last time.

The biggest problem with starting the day with a blood draw is that Bean becomes convinced that everyone she comes into contact with during the day is going to stick a needle in her.  So, she screamed while we weighed her.  I had to wrestle her down to get measured.  Thankfully, the echo rooms have TVs in them and we hit during Mickey Mouse Clubhouse, so she would get distracted by that, then every once in a while she would realize where she was and start writhing and screaming... The echos probably take 30-45 minutes, but it seems like hours that you are stuck in there.  I have to hold her down because she tries to roll over to avoid the little tool they use or she takes her hand and pushes them away as hard as she can.  And she is getting stronger.  But, we survived.  I always feel bad because I know people can here her screaming up and down the hallway and out into the waiting room - and the echos are not at all invasive.  But, she HATES being held down or restrained in any way, so she hates the echos.

Finally, we got everything taken care of and I was excited to see Dr. McDreamy was back and would be her main doctor this visit.  Sure its ridiculous to call him that, but he is very cute and heck, I have to find something good about these visits!  We also got to say goodbye to one of my favorite fellows while Bean was in the hospital.  She was the one who wrote these orders in Bean's chart:
"decrease vent rate to 26bpm and give Mackenzie a kiss to make her feel better."
She was so awesome!  She is returning to North Carolina where she went to school and they are lucky to have her.  I'm sorry we won't see her anymore, but I will truly always remember her and be thankful for her being our fellow.  

So, back to Dr. McDreamy...he examined Bean, looked at all her records, asked all the regular questions and then Dr. Chin, the head post-transplant cardiologist who oversees everyone who works with Bean came in and they had a little chat about her rejection status.  When it was done, Dr. Chin left and my hubby asked about the repeated 1A status.  He was super honest and said that they really don't know...because pediatric transplants are so new and the medicine regimens have been changing as medicines get better, etc. they really can't say what a repeated 1A rejection means.  He did explain, for the first time that I can remember, what a 1A status means though.  It means that white blood cells are found in higher numbers than "normal", meaning that her body thinks the heart is an infection or foreign object.  But, it means that the tissue sample shows no signs of harm from those white blood cells.  So, her immune system is working, but not so well as to cause any actual damage to the heart at this point.  He said that some places would treat 1A as normal, while others would act aggressively to get to zero.  LPCH is somewhere in the middle.  And he said his thoughts are that increased medication risks damage to the kidney later on and that a large number of pediatric heart transplant recipients end up needing a kidney transplant in their late teens/early twenties due to medication.  So, he thinks if it isn't showing damage, increasing the meds is just asking for something else to go wrong later...and he said that he probably isn't much more able to guess correctly than we are about what this means long term.  I told him that I hoped he was at least a LITTLE more able to guess correctly than we were...all that med school and all...My very favorite quote of the appointment though came at the end of that discussion, when he said, "basically, we're looking at the best possible transplant patient that I've ever seen."  Which is a pretty awesome endorsement of Bean's current health at least.  :)

So, we are in the same old place we've been.  Biopsy is scheduled for six weeks from now.  This one will be her annual, which means they do all her pressures, test her arterial flexibility, plus all the normal stuff they do at biopsies.  So, it will be a longer day than normal because she has to under for longer and then recovery is slightly longer.  Hopefully all goes well though and we get that just-out-of-reach zero we've been looking for!

In addition to the appointment, we also visited my parents, who live about two thirds of the way to the hospital from our house.  They so enjoy the Bean!  Overall, it was a great visit with them and a positive appointment at the heart clinic!  

As I said, I will be trying to play a bit of catch up on here over the next week or so as we've done some really fun things and Bean is quite the character.  I wouldn't want any of her fans to miss out on her escapades!  

Thanks for reading!  To finish off, our friend Karina just got back from a trip to China and she brought back an awesome hat for the Bean.  Here are some pics of her in the hat and towards the end a cute little dress my sister made for her!

Hat from China, Bean from Chico

Papa, Bean and Grandma on the couch.

Trying to get her to show the matching bloomers...

Daddy and Bean - she's saying "cheeese"

Grandma and Bean on a walk

And...we're done...

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...