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...

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!

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...

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.

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!

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...

Who's Who in the Hospital

I came across the article below in my Kid's Health newsletter (which is a great resource if you have a child with any kind of recurring health issues) and thought I would share. I remember when I arrived at Lucille Packard for the first time for Bean and the overwhelm, but also relief, when I ran into (literally could not pass in the hallway of the hospital wing) Bean's "medical team" in the PICU. I started learning the different levels of training of the people working with Bean. Some of my favorite people were the Residents assigned to her. I still see some of them who have gone on to do fellowships at LPCH. And may of the fellows are still there, although now that we are not actually in the hospital for rounds, we see them much less often. In fact, at our last heart clinic visit we got to see my very own Dr. McDreamy (its ok - my husband knows about him) who gave me the report on Bean's first biopsy at LPCH. I believe he had just started his fellowship in cardiology then and he dropped by to see Bean last week and was amazed to see how big she was and how great she looked (the hospital is the only place people are constantly commenting on how "big" she is). It really does seem like a "team" in the true sense of the word when they are all working together.

Anyways, if you have been or will be visiting any teaching hospitals or have a child with an ongoing health condition, the following article will give you a list of professionals with whom you may have dealings. Knowing the possible resources is half the battle if you are placed in a large hospital setting. I must say that LPCH was very, very good about educating us on the resources available to us, but I have heard of others who were not so lucky. So, being able to ask about getting a visit from a Child Life Specialist or an evaluation by a Palliative Care Specialist is something you may not think of without some knowledge on why you may want to speak with one of those individuals. It also helps to know who is making the decisions, who has oversight for care, and who is talking to who and how often to make sure that you understand all of the different voices that are being heard on your child's behalf. And finally, being confident enough to listen closely, ask questions and have (educated) opinions is something that made me feel better throughout the hospitalization with Bean. I am glad that I was trained in communication and felt confident in my ability to listen to things, process them and ask effective questions. I realize that many parents don't feel that way. I also realize that some parents may feel defensive about things because of a lack of confidence in their own understanding. So, a little knowledge can go a long way to alleviate some of that defensiveness and give a parent back some of the control they feel they lose when you enter the hospital setting.

I am so glad that we have not had to have another hospital stay in quite a while and I hope that we will never have to have one for more than a couple of days in the future (that is a hope against hope I think, but who knows?). But, I am also glad that I can now enter the setting when we need to with a knowledge and confidence that will allow me to be an effective advocate, a comforting caregiver and most important, a good mom to Bean. I hope that if you find yourself (or if you know someone who finds themselves) in this situation, that the following information will be beneficial.

Who's Who in the Hospital