A Second Heart

Not So Wordless Wednesday - Day of Doctors

noreply@blogger.com (Sue Peterson) — Thu, 19 Jan 2012 07:08:00 +0000

Today was a long day of doctors and nurses at Lucile Packard Children's Hospital for us. We started the day by getting up at 5:45 a.m., leaving my parent's house at 6:15 a.m., arriving at the heart clinic at 7:40 a.m....and then we waited a few minutes:

Bean was still in her jammies and she actually did much better today than her last few appointments. She hardly cried at all upon arrival to the hospital (a few whines of "no hospital...no hospital" was about it) and she let herself be weighed (26.4 lbs.) and measured (34.5 in.) and pulse oxed and blood pressured with minimal complaint! She was even good for the echo and although she did not want the nurse or doctor to "listen to heart," she offered up her ears happily for a viewing and finally allowed them to look in her mouth (for a very short time) and use the stethoscope to listen to her heart and lungs. I was very happy with how things went for the heart clinic appointment. Everything looked good other than her prograf level being a little low, so we've gone up on the dosage and we'll check it again in a week or so. But, all her numbers looked good.

We had a three and a half hour wait between the heart clinic appointment and the ENT appointment, so we went to breakfast at one of our favorite spots - Hobee's. It was so good. They brought Bean a little fruit "face" to start the meal (I should have taken a picture, but didn't think of it), with banana and grape eyes, a strawberry nose, whipped cream cheeks and a cantelope mouth. Bean ate it happily and had some toast as well. Both Jason and I enjoyed their famous Blueberry Coffee Cake with our breakfasts and left happily full. We walked around the shopping area once and then got back in the car to see if Bean would go to sleep. Unfortunately, she was pretty wide awake and really wanted to go to a park. I remembered a park we had visited a couple of times with Bella when she was in the hospital and we headed over there. We ended up playing there for about 40 minutes and it truly made Bean's day. She learned how to climb...and climb she did:

She had to work hard at it because her legs are really far too short to function well on most playground climbing equipment, but she followed instructions, kept trying when things went wrong and she made it to the top a couple of times! She is not scared of much, but is relatively safe-minded in that she stops when out of her league and will take help when she really needs it. But, when Jason tried to help her before she really needed it, she responded, "No Daddy. I strong enough to do it." It was very cute. When we left there, we still had about an hour to kill, so we went across to the mall, got some Starbucks and walked around there for about 30 minutes. After that we headed over to ENT.

The ENT appointment was pretty easy. They think her tonsils look fine, but with her snoring, mouth breathing and the anesthesiologist saying she had large adenoids, they think it warrants a sleep study. So, we will have to go over for an overnight stay, with Bean hooked up to a bunch of monitors for the night. I'm not sure how that will go, but we shall see. They will monitor all of her activity - breathing, brain activity, and a bunch of other stuff while she sleeps and then decide if there is enough of an issue to warrant taking out her adenoids or if we can wait it out a bit longer. She is breathing so much better at night now than she was 6-8 weeks ago that I feel a little ridiculous now, but she does still snore every once in a while and she is definitely a big mouth breather right now.

Bean slept all the way to my parents' house! She was exhausted. But, I am so happy with her behavior. I am hoping that we have passed the point where she cries and cries when going to the doctor!

Wordless Wednesday - Bean, Bat Ray, Bella and DaDa

noreply@blogger.com (Sue Peterson) — Thu, 12 Jan 2012 06:42:00 +0000

I have neglected all of you lately, I know. But, I have a new blog that is not Bean-related over at Make It a Girl's World if you would like to check it out. I will continue to post Bean-related information here though and today, I am participating in the Wordless Wednesday meme. Enjoy!

Meet Me On Monday

noreply@blogger.com (Sue Peterson) — Tue, 13 Dec 2011 07:48:00 +0000

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 therapy...one 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!

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

noreply@blogger.com (Sue Peterson) — Wed, 23 Nov 2011 17:49:00 +0000

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!

Fantasy Land Friday - From Transplant to Triathlon

noreply@blogger.com (Sue Peterson) — Sat, 19 Nov 2011 06:32:00 +0000

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!

Thankful Thursdays - Aunt Dawn

noreply@blogger.com (Sue Peterson) — Fri, 18 Nov 2011 06:33:00 +0000

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 Dawn...it doesn't go unnoticed!

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

noreply@blogger.com (Sue Peterson) — Tue, 15 Nov 2011 06:37:00 +0000

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.

Happy Halloween Week!

noreply@blogger.com (Sue Peterson) — Thu, 03 Nov 2011 18:40:00 +0000

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!

We're the lucky ones...

noreply@blogger.com (Sue Peterson) — Wed, 05 Oct 2011 06:52:00 +0000

Driving the 12-passenger...let's go people!

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

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

About town in Chico...she is ready and set to go!

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

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

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

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

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

Loathing Fear in Chico

noreply@blogger.com (Sue Peterson) — Tue, 20 Sep 2011 05:27:00 +0000

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

noreply@blogger.com (Sue Peterson) — Mon, 12 Sep 2011 07:08:00 +0000

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

noreply@blogger.com (Sue Peterson) — Fri, 09 Sep 2011 10:27:00 +0000

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

noreply@blogger.com (Sue Peterson) — Sun, 17 Jul 2011 23:04:00 +0000

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

noreply@blogger.com (Sue Peterson) — Wed, 06 Jul 2011 07:18:00 +0000

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

noreply@blogger.com (Sue Peterson) — Thu, 09 Jun 2011 23:54:00 +0000

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

noreply@blogger.com (Sue Peterson) — Fri, 04 Mar 2011 19:18:00 +0000

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

More Medical News - All Good So Far...

noreply@blogger.com (Sue Peterson) — Wed, 02 Mar 2011 18:50:00 +0000

Hello out there! Its been a while. This past month, as is usual for me, has been a whirlwind of activity (travel for speech and debate every weekend, a new semester starting, illness for a week at the start of it, etc.) and I am glad to have February behind me. March is looking only a bit better, but every day puts me closer to surviving the craziness. In addition to all the work craziness, Mackenzie had two appointments last week at Stanford. We were finally able to see an endocrinologist there and they seemed very happy with her growth progression. Although her height and weight is still not "on the charts" (which means it is below the 3rd percentile for her age group), she is staying on a normal curve - it just falls below the 3rd percentile curve. They said that considering her health history, this is actually very good. They were a bit concerned with her head size being in the 75th percentile. The girl's got a melon on her - that is for sure. But, it does run in the Peterson family to have big heads and its always been big. They are also concerned a bit with her breast tissue growth. She has had some lumpy growth in her breast since she was in the hospital, but as this WebMD article says, this is often normal in babies. So, they have not been too concerned, but the size was at least a little concerning to them, so they said they would do a blood test for hormone levels. If they come back normal they will leave it up to the transplant team to decide whether to check out her head or not (they did an ultrasound via her fontanel after the transplant and all looked good other than some vascular enlargement that they were not terribly worried about).

Since her fontanel is close to being closed now they would have to do an MRI to check it now and that requires her to be knocked out. So, we'll be watching and waiting to see if we have to do that. The hormone test consisted of her getting a shot (which she was not very happy about) and then waiting 40 minutes and having blood drawn. The shot is designed to send a "pulse" of hormones out, and they read the maximum level of those 40 minutes later to see if she is producing too much hormone. It takes two weeks to get the results, so we are now waiting. They seemed to think that with no other signs of issues with hormones, that she probably is fine, but they wanted to be sure. So, overall it was a very positive visit.

We also had our heart clinic visit and that was very positive as well. Her echo continues to look great, she weighed 21 lbs. 7 oz. and she is now 29 inches tall! She told Nancy, our transplant nurse, to "get out" when she came in the examination room, but soon warmed up to her and her Mickey Mouse watch that plays "Its a Small World". She is growing to hate the doctor's appointments though. I fear what the next year or so holds for us - while she is too little to really rationalize the visits but big enough to really protest everything. Nancy is so great though - she got her to let her take her blood pressure by letting her push the button to start the machine and count with the numbers as they were going down. It was fantastic to watch because Bean is very stubborn, but was willing to cooperate because she was involved in the process. Nancy is just great. So, I'm glad she didn't get out when Bean told her to! :)

We are now on schedule for another biopsy in six weeks and are hoping for another zero, which would allow us four months before her second annual exam (what? I can't believe its that close to two years already) and then hopefully if all looked good we could go to a six month biopsy schedule! What a relief that would be.

Other than that, Bean has been doing great. She is saying a ton of words (repeating after everyone and everything). She loves baths and brushing her teeth. She has grown out of her six month clothing and is now moving through the nine month clothes into twelve month clothes! So, she's only a year behind on the clothing size time line! :) She recently went to the snow near our house and visited the fish farm. Pics below!

Welcome to Heart Month!

noreply@blogger.com (Sue Peterson) — Fri, 04 Feb 2011 03:44:00 +0000

February is many things to many people. The second month of the year, Valentine's Day month, Black History month. But, since the discovery of Bean's heart defect, it has become American Heart Month for me. It seems like all things point in the direction of paying special attention to the heart this month - Valentine's Day revolves around hearts, Bean was born in February (the 19th to be exact - and almost two months early, so this was not the original planned date), Bean had a heart problem that required her to get a new heart...so, I will be spending some time talking about heart issues this month on my blog! Not all of it will be health related, but a lot of it will be. So, hopefully you will find it in your heart (pun intended) to read along and maybe you'll even learn a little something here and there.

Next week is Congenital Heart Defect awareness week, so I will save much of my pediatric heart information for then. This week, I was thinking I would just focus on heart awareness. So, today, to get the ball rolling, some background information on American Heart Month.

Congress decided in 1963 to require the President to deem February American Heart Month each year. The American Heart Association led the efforts to get it started. The focus for the American Heart Association is to build awareness and to raise funds for research and and education. According to the CDC, heart disease is the number one killer in the US and on average, every 25 seconds an American will have a coronary event. And that isn't a night out or a birthday party, but a stroke, heart attack or other interruption of normal cardiac activity, often severely debilitating the person suffering it or resulting in death.

The bottom line is a need to take care of your heart. The fact that Bean has someone else's heart beating inside her little body still amazes me to this day. In honor of her donor and her donor family, I want to make sure she takes good care of that heart. I realize that I need to model behavior for her if I want her to do the things she needs to do. It isn't complicated stuff really, but I definitely have neglected many of the things I should be doing. So, in honor of American Heart Month, I am renewing my commitment to living a healthier life. I made an appointment for a physical on Monday, where I will get all the battery of tests performed. I am also trying to lose some weight.

So, I challenge any of you reading this to think about what you will do get more heart healthy this month. In the interest of aiding you in that effort, I will focus my next post on providing a number of different ways you can easily achieve the goal of improving your heart health! So, tune in if you're interested in making changes but are not sure about just what you should do!

Here's to your, my and everyone's heart health! Let's reserve donor hearts for those with defects by keeping healthy hearts healthy when possible!

Mommy Madness Blog Hop - Mommy Time

noreply@blogger.com (Sue Peterson) — Fri, 21 Jan 2011 01:43:00 +0000

I am participating in the Mommy Madness Friday Blog Hop this week! I figured doing a few blog hops may get me posting a bit more frequently and diversify the posts a bit. So, this week's theme for the Blog Hop is "Mommy Time" or what I do to escape the madness. I don't do anything really specific (and let's face facts, I often do not escape the madness - I embrace it), but I do like watching TV. My favorite shows are what my friend calls "Murder, Death, Kill" shows - Law and Order, CSI, NCSI. But, I also like The Good Wife, Glee, Parenthood, Modern Family and The Middle. I have become addicted to my DVR since I can't predict when I'll be able to watch TV. I also like to read mysteries (some more murder, death, kill). In addition, I am a member of Chico Mothers Club and I like the monthly Bunco games and the monthly socials. So nice to get away, but still be able to talk about your kid(s) with people who know the realities!

I do think that Mommy Time is important, but I also find that Bean is a stress reliever for me in some ways. Its hard to be stressed out and upset when she does her goofy "beeeeees" instead of please or her elephant noise accompanied by her arm lifting like a trunk. She's just too cute! So, although she sometimes drives me mad, she also can be a great mood-lifter!

2011 - Year of the Zero?

noreply@blogger.com (Sue Peterson) — Thu, 20 Jan 2011 08:38:00 +0000

The year has been off to a busy start (what else kind of life is there?), but a good one. Yesterday was Bean's first biopsy of 2011 and although the day was a long and totally frustrating one, the results were well worth it - a ZERO!!! Its only her second zero since she got her transplant and we're very, very happy to have it. But, it came after a long, long day.

Originally, we were scheduled for the first case in the Cath Lab (the picture on this page looks almost exactly like the one at Stanford). But, five days ago they called to say that a baby had been born who was going to need to go in first thing in the morning - at only five days old. So, we got pushed back from 8 a.m. to 11 a.m., which meant we could sleep in a little longer (originally, we would have to be there at 6:30 a.m., but now we had until 9:30 a.m.). We arrived at 9:20 a.m., with Bean having not had a bottle or any food since around 10 p.m. the night before. She doesn't really like juice or water much, so she had a very small amount of water that morning, but we were told to not give her anything after 8 a.m. She was in pretty decent spirits until we got back to the pre-op examination room. She has become more and more agitated each time and now she starts to get upset as soon as we get in the room. She doesn't like being hooked up to the monitors (they will usually put her on a pulse-ox, take her blood pressure, listen to her heart and lungs and take her temp) so she just cries and fusses the whole time. This nurse only made her do the pulse-ox because she was so agitated. She tried to listen to her heart and lungs, but she was pretty much screaming the whole time. We then went to the pre-op waiting room where there is a TV and some toys. She was once again in pretty good spirits...then Nancy from the transplant team came and wanted to listen to her heart, etc. and she once again lost it. But, Nancy has a Mickey Mouse watch that plays "Its a Small World After All" that Bean loves, so that distracted her enough to allow Nancy to listen. She said she sounded good. We once again returned to the waiting room. We sat there for about 30 minutes before someone finally came and got us and took us to the pre-op prep room.

The pre-op prep room has a bunch of gurneys and any pre-op meds are given here and the anesthesia team comes and gets the patients from here to take them to their operating rooms. So, we settled in here, trying to keep Bean's mind off of her "bah" (bottle) that she kept asking for all morning. We watched some TV, we played with her puzzles, we looked at a book...but, she was obviously not the happiest person. We waited a long while...the nurse finally came over and said that she had a call in to Mary (the cath lab manager/nurse) to see what was happening. It was around noon when the nurse came with Bean's Versed (a drug that helps the patient to relax and supposedly allows them to forget what happens in the procedure). She got loopy, she got very unbalanced, she hit her head on the crib gurney bars a couple of times, did some funny stuff...but, we continued to wait and wait (usually verced is given about 10-15 minutes before they come to get her). The versed started to wear off about 45 minutes later and she started to get super agitated. It was really stressful. We found out about 40 minutes into the versed that the first case (the five day old baby) had taken longer than they thought and now they had an emergency case from the Third Floor PICU that needed to be done.

This is, of course, frustrating. After all, you can't very well explain to a 23 month old why they are not being fed, why they are starting to feel overly tired and agitated and why they are going to have to continue to feel that way while being stuck in a crib gurney. But, who do you get angry with? The five day old who needed to have a heart cath? The kid from the PICU who needed some emergency procedure (which, by the way, Bean was three times while in the hospital)? The cath team, who obviously have a lot to deal with...much of it life and death situations? There is no one to be angry with, no one to be mad at. Only non-directed frustration with no chance of yelling at someone making you feel any better. Bean finally fell asleep about an hour and 10 minutes after the Versed. They came and got her about 2:15 or so and since she was sleeping, they didn't give her another dose of versed. She woke up while being wheeled to the cath lab (which is a long trip down a hallway between the Children's Hospital and the main hospital), so I carried her the rest of the way. We then gowned up and I took her in, put her on the table and held her while they put all the wires on her and put the mask on her - which she hates. But, she falls asleep pretty fast after they start the anesthesia...thank goodness! On an interesting side note, they had "flavored" anesthesia, so the stuff coming through the mask smelled and I guess tasted like Caramel. When she started to relax and stop crying, Bean tried to lick the mask! :)

We had not eaten at all that morning, thinking we would be able to grab something around 11 a.m. so both J and I were starving! We went across the street to the California Cafe to eat. We thought it would be 30-45 minutes before we would hear anything. The phone rang about 25 minutes later and I must admit that my heart jumped a bit...why would they be calling so soon? But, the woman who manages the surgery waiting room for the Children's Hospital, Pam, is wonderful and immediately said, "Everything is fine - she's fine, but the doctor wanted me to let you know she was done and all went well. Take your time as she will be asleep for a little while." So, we quickly finished our meals and headed back over and once again, we hurried up and waited. We sat in the waiting room for about 15-20 minutes and then were called back to the recovery room. Bean was still asleep (thankfully), but had woken up and already tried to rip out her IV (the reason I was thankful she was asleep - she REALLY hates to have IVs in). Our nurse was awesome and Bean slept right up until just before the Echo person came. We made her a bottle and she sucked it down while getting the echo done. It was about the calmest echo for her I've seen since she got out of the hospital. She usually wants to grab the person's hands and push the echo wand around and roll away from their exam. But, she was so hungry she just laid there and ate!

Once the echo was done and read, the nurse cleared us for release and took the IV out and disconnected all the tubes. We got Bean dressed and headed out, approximately 8 hours after we arrived. Sigh...but, we were able to get home to Chico by 11 p.m. and Bean slept great last night and has been great today. Her neck (where they went in for the biopsy) looks great - just a little scratch mark where they went in and a slight bruise around it. She went to playgroup today and had a great time! And this afternoon we got the call that her biopsy was a zero. It made our day! Not that there is a big difference between a zero and a 1A, but it was beginning to feel like we were on a road of rejection and we weren't going to be able to get off. So, now I feel like we've at least found an exit and are headed in the right direction.

We have to go in for a clinic visit in six weeks, we have an endocrinologist visit around that same time to get her checked because of some breast tissue growth and her fontanel is still pretty open considering her age. We'll have another biopsy in three months and if that is another zero we get to go four months without a biopsy! Which will be just in time for her annual biopsy. Crazy to think that two years since transplant is that close! It has been a whirlwind of a year and a half. I still feel like I'm just figuring out what I'm doing! And I only sometimes feel like I'm figuring it out!

So, things are a bit less tense now. We have hopefully figured out the right med levels and Bean's body is being more accepting of her heart. I still will not feel completely comfortable until we get another zero, since she has had one a while back, but immediately went back to the 1A status with the next biopsy. And although I know that the zero to 1A distinction is pretty small, it just feels better to have a zero!

Bean and J are taking a road trip together to visit his parents tomorrow. I will be at home, prepping for the new semester, trying to get the house cleaned up and organized for the new semester and doing a little bit of R&R before things really kick in with classes, tournament travel (almost every weekend for the months of February and March), and the Bean. It will be nice to have a few days of time to clean without risk of it being made a mess seconds later, to work without dealing with "bah" requests, dirty diapers and just general necessary Bean entertainment, and being able to leave the house with just a purse! But, I will miss her a ton (and J a little too). I feel like I miss something precious every day I'm not around her. She really is a bright spot in my life and I'm so very thankful to have her and to have her healthy!

I know not everyone's 2011 is looking as good at this point. My thoughts and prayers go out to those families who have children in the hospital currently. Please do the same if you are lucky enough to have kids at home who are healthy! Thanks for reading!

2010 Recap Carnival - First Lines of First Posts

noreply@blogger.com (Sue Peterson) — Sun, 02 Jan 2011 07:08:00 +0000

I have been motivated to do a little recapping of 2010 - using the method introduced by Musings of a Housewife. I am taking the first line or two from the first post in each month of 2010. If I think its interesting enough, I will include a little additional information. 2010 here we come:

January: While staying at the Ronald McDonald House this summer, we met a variety of families who had children with a variety of conditions, and none of them are easy to handle. But, the ones that struck me as the most unfair were those children who had gone through cancer and all the corresponding harshness of chemotherapy, only to find out that the very same drug concoctions that had saved their precious lives had caused their hearts to enlarge and stop functioning correctly.

Modern medicine is fantastic in so many ways, but still has many drawbacks with all the side effects. Its a scary proposition when you have a child on multiple drugs with multiple side effects. I did read online from a doctor that one of the reasons they switched from single immunosuppressants to a combination of two or three immunosuppressants was to cut down on the side effects from high doses of the one - but just like with chemo medicine - there are great and necessary benefits, but also horrible and scary drawbacks. Nothing is perfect...

February: Over at CHD-UK there will be a great series of blog posts celebrating stories of individuals who have experienced congenital heart defects. The first story is truly inspirational - a man who came back from near-death and heart surgery to complete an Iron Man Triathlon!

This post reminds me that I need to get on writing letters to city and county officials about declaring a CHD recognition day in February. Good reminder...

March: Today I have a special blog entry! I am reviewing a great new children's book called Danny the Dragon "Meets Jimmy" by Tina Turbin and illustrated by Aija Jasuna. The book is about a little boy Jimmy who finds a special shell at the beach and brings it home. Soon after getting the shell home, Danny the Dragon pops out of the shell with "bright red shoes," "a yellow backpack," and wings!

An awesome book that Bean loves looking at, even though she is not patient enough yet to let me read it to her in totality.

April: This was posted on one of the listservs I am a member of and I thought it was cute. Not sure who should get the credit for it, but thought it was worth sharing and works well with my Thankful Thursday post:

The post was a job advertisement for a parent - very cute and very true to life!

May: So, I thought it would be interesting to look back over our Carepages and see where we were a year ago today. Interesting entry - Mackenzie was still in the hospital from her FIRST stay (a week at our local hospital with what was thought to be RSV, then transferred to Sacramento's Sutter, where her enlarged heart was discovered, so after a week she was transferred to Stanford's Lucille Packard), and had just been moved to the infamous "3rd Floor" where the non-ICU patients go (sometimes called the "step-down" floor".

'Nuf said!

June: We got great news yesterday! Bean's latest biopsy came back a zero for rejection!

Only zero since the transplant, so I will relish it a bit. It doesn't seem like it was that long ago, but it also seems like it was forever ago. I distinctly remember thinking that we had it all figured out and would have zeroes from there on out...but, no. Its been the only one.

July: I didn't write a thing in July. That is kind of sad. I wasn't even working as an excuse. Oh well...

August: And to that I say "bleh" - which is what it looks like Bean is saying in this picture! Sorry I've been out of touch for the summer, but it was quite an adventure with my husband being gone for six weeks, a two week trip to AZ (half way through which my husband joined us), and just a lot of chaos in my life and schedule!

And there is my excuse for the lack of posting in July and no posts until the middle of August. The "bleh" is referring to Bean's annual cath which was scheduled for the next day.

September: Some refer to today as Black Friday, but since my days as a retail clerk, I refuse to participate in the shopping extravaganza. So, to me, today is the day after Thanksgiving - or leftovers day!

October: Health care is obviously a big concern to me and my family. We no longer have the option to be unaware or nonchalant about that part of our lives.

A post about health care and some things that were unknown to me prior to reading this doctor's blog post.

November: Just thought I would share a few of our highlights from Halloween! We celebrated the whole weekend, with Bean's Grandma and Grandpa from Bakersfield in town.

That was a GREAT weekend. I really enjoyed Halloween this year!

December: I try not to look too far in the future when worrying as there is plenty to worry about on a day-to-day basis, let alone worrying about things that might or might not happen years down the line. But, I must say that every once in while an email thread on one of the CHD or transplant parent lists I'm on will start some future-focused worry.

And ending on a worrying note...appropriate I guess. Its always there...underlying everything. But, there is also a ton of good in these blog posts.

The year ahead - who knows what it holds? I hope to blog more regularly here and definitely don't want to have a month with NO posts next year! But, we shall see! I wish you all a Happy New Year!

For 2011: Recognitions, not Resolutions!

noreply@blogger.com (Sue Peterson) — Sat, 01 Jan 2011 05:39:00 +0000

It is already 2011 on the East Coast as I write this. I have been rather resolute in not making resolutions this year. They seem to serve as nothing but reminders of how much I DON'T accomplish in a new year. So, instead, I'm going to be doing recognitions for myself. I know I do accomplish things (even if they are often mundane things), but they never seem to be the things that I set out to accomplish. To avoid all that guilt and disappointment, I will be doing some daily recognitions - reflecting on what I've accomplished each day. Basically, I'll be giving myself some credit!

This year has been hard on me, especially the last two or three months of it. I can't point to any specific reason why - there were no hospitalizations for Bean (thank God), there were no tragedies amongst family or friends to speak of, there was just a lot of STUFF. Stuff to deal with, stuff to do, stuff forgotten, stuff that seemed to take up every waking hour of my days and often seep into my sleep at night. I think some of it probably has to do with a constant underlying state of anxiety in my life. Anxiety about Bean, anxiety about work, anxiety about finances, anxiety about my anxiety. It really starts to get exhausting after a while. In addition, I have heard of "mommy-brain" before, but I think I have a really, really bad case of it. I literally can't remember things from one minute to the next...and it isn't just when my mind is on other things - it happens all the time. I started to keep a list of things I needed to do, but I would literally forget where I put the list! How sad is that? So, I was feeling overwhelmed, disappointed in myself and just not seeing what I could "resolve" to do to fix all of it. So, instead, I'm just going to resolve one thing - recognize the things I accomplish each day. Some of them are sure to be tedious - I give Bean her meds each day, I change diapers, I get her dressed and redressed, I pick up her messes, I take her places, I play with her, I sing with her, I read to her. I also do a few other things pretty regularly. I get groceries, I do laundry, I sometimes even cook a meal here and there. I grade papers, I prep for classes, I go to meetings, I do paperwork (lots and lots of paperwork it seems), I chat with students, I go to speech and debate tournaments, I may even do some research for speech and debate every once in a while (though not very often anymore it seems). I feed the dog and cat, I scoop the cat box, I clean the house (or at least parts of it that people will see), and sometimes I even do some decluttering.

So, if I do all those things, why do I feel like I don't accomplish anything? Part of it is that I think our society thinks in terms of what I would call "big ticket items". I could tell when people asked what Bean got for Christmas from us that they were a little disappointed in our answers. Since she doesn't really "get" Christmas yet and we knew that the grandparents would be doing some purchasing on her behalf, we went pretty small this Christmas for her. I bought a lot of things at the $1 store for her to open (because at her age, this really is more than half the joy) and some Christmas PJs and a thrift store purchase of a Disney wordbook (she is currently infatuated with the Mickey Mouse Clubhouse on Disney Channel - all things Mickey warrant a big smile and possibly a Hot-Dog dance). She was thrilled with all of them, but some who asked what she got seemed a little let down. I'm sure they didn't mean to sound that way and in the end with all the relatives and friends, she ended up with a lot of great gifts (a number of Leap Frog items, including a Leaptop so she can sit on her laptop like Mommy and Dada!) and stuff to last her a year, even though she has a birthday coming up in less than two months!!! Anyways, that was a long way of saying that we have come to expect big ticket items and only those are meaningful or memorable in a lot of instances. And I feel like my life's accomplishments are not filled with big ticket items - its filled with a lot of little $1 store items - they fill up a basket cheaply and quickly, but their effects often don't last long. By the end of a day, I don't feel like I've done much - sometime even at the end of the week, I can't find anything really memorable or meaningful that I've accomplished. But, when I think about it, my giving Bean her meds, as mundane as that may seem, is actually a life-saving action. Getting her blood draws (on a weekly basis this month) is keeping her healthy. That's a pretty big ticket item! And my doing the paperwork at school means that over 25 students get to travel to tournaments and experience competitive speech and debate. That is pretty meaningful for some of them. It doesn't seem like the paperwork matters, but what it is tied to definitely matters. And although cleaning and doing laundry isn't very sexy and grading papers isn't exactly life-changing, it all adds up in the end. I would like my focus this coming year to be one in which I recognize these accomplishments and give myself (and others like me who are doing these things) some credit.

If you would like to join me in this effort, please do! You can comment on this post letting me know you are "in" - and you can start doing your daily recognitions tomorrow. I may even try to put together a "button" for those taking part. I won't be laundry listing my little $1 store accomplishments each day on this blog. I will probably start some kind of "Recognition Journal" and this blog will serve as a place to share any big ticket items that arise as well as a place for reflection and encouraging others to recognize their accomplishments as well.

So, 2011 will begin for me with a messy house, a new class prep for next semester and grades to enter for the Fall semester. But, those are all just things that will serve as possibilities for recognitions now - they are opportunities rather than disappointments! Its all in our frame of mind...right?

A Very Merry Christmas...

noreply@blogger.com (Sue Peterson) — Sat, 25 Dec 2010 04:13:00 +0000

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

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

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

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

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

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

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

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

Merry Christmas and to all a good night!

Sue, Jason and the Bean...

NIH Research Improving Hopes for Infants and Toddlers on Transplant List

noreply@blogger.com (Sue Peterson) — Sun, 19 Dec 2010 18:13:00 +0000

This is a good informative article on how CHD's and small children waiting for transplants are driving research in new Ventricular Assist Devices (VADs) that will work for smaller children. Bean was once a candidate for having to go on the Berlin Heart, a VAD that is not fully approved by the FDA, but is often given a "compassion" waiver to be used on smaller children because there are no alternatives in the U.S. at this point. Luckily, Bean improved before that happened - but other children need options available and this research is a hopeful look at some options. There are some links at the bottom for more information on the NIH program for devices as well as NIH information on CHDs.

Heart Pumps For Kids - Health News Story - WSOC Charlotte

The Giving Spirit...

noreply@blogger.com (Sue Peterson) — Sat, 18 Dec 2010 18:00:00 +0000

This story from GA really touched my heart for a number of reasons. First, I am pretty sure that Bean's donor heart came from a child who had contracted meningitis (from the post-transplant infectious disease follow-ups). Second, the fact that a family could lose a child, make the difficult decision to give the organs to allow others to live, and then continue to give each year through these stuffed animal deliveries is a testament to the amazing capabilities for giving that is part of the human spirit!

As we enter this season of giving, this serves as a reminder of the truly meaningful gifts that we and others are given daily that we not always remember - healthy children, homes with warmth and love, family and friends who support us, and strangers like the Wildes who give to others not because they know and love them personally, but because they are empathetic to their situation and see a need.