Zero = Perfect Score on this Test!

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

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

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

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

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

Why Alice.com Is Great for Parents

I am not receiving any compensation from Alice.com for this post, although I did just add their "refer-a-friend" button to my blog and I will receive $10 off  for each person who signs up and purchases using that button.  But, really, I don't care if you do it through the button on the blog or not, I just think Alice.com is awesome and thought I would share.  For those of you unfamiliar, Alice.com is an online retail option.  They carry all the same things that your local Rite Aid, Walgreen's, etc. would carry.  But, they offer free shipping and great prices and even the ability to use online coupons for your purchases.  I signed up for it a while ago and have used it a few times to purchase formula and paper towels in bulk.  The prices for formula were competitive with our local chains - only one place actually beat their price - and with the free shipping, there was no reason for me to go packing around 10 cans of formula rather than get it delivered straight to my door! 

I personally like Alice.com because I can get on, pick what I want to purchase without having to load the Bean into the car, put her in a "who-knows-what-has-touched-this" shopping cart and tote her around a store!  I will still need to go to the store for more grocery-type items, but as I plan for my six weeks of "single parenting" (my husband will be working in Michigan for six weeks starting the end of June), I definitely will utilize this option much more frequently!  The delivery was not overnight, so it will require you to plan at least a couple of days ahead for what you need, but that isn't bad with free shipping! 

The other thing I love about Alice.com is the origin of the name.  All of you probably remember Alice from the Brady Bunch?   The tag line for the website is "Everyone Needs an Alice!"  I think that's awesome.  In addition, their shopping layout is also really easy to use - they have symbols for all the major rooms in your house (toilet paper roll for the bathroom, pacifier for nursery, bed for bedroom, etc.) and then all things that would be needed in that room - supplies, cleaners, etc. are under that link. If you don't like shopping by room, you can shop by manufacturer/brand, green/organic, premium selections, best deals, or recently added.  Its really genius!

Finally, your orders arrive in a cool Alice.com box with a free gift inside (usually a pen for me), and your items.  Right there at your door!  No loading/unloading the car.  No loading/unloading the kids.  No fighting with the heavy bags or awkwardly packed bags.  No getting to the store only to find out that what you wanted to get is sold out or that you forgot your coupons (coupons available for products will automatically pop up in Alice.com for you) or that you can't remember what it was you were going to the store for in the first place.  Okay, maybe that last one is just me.

So, I encourage you to check out Alice.com - parent or not.  Its a pretty cool online shopping site and if you use the button on my blog you can get $10 off of a $50 purchase - and remember - no shipping! 

Unexpected Motherhood

As I approach my first Mother's Day NOT spent in a hospital room, there is some time for reflection.  I don't think motherhood is ever what we EXPECT it to be.  After all, first-time mothers have NO IDEA what to expect.  We all watch other people parent.  We may even have taken care of other people's children or younger siblings, but when a child is actually yours, it changes everything.  In addition, each child is different - so even if you have had previous children, you aren't quite sure what is going to happen.  But, I think parenting a chronically ill child or a special needs child (or both, as the case may be), is really something for which no one can be prepared.  And when you combine the two - first-time parenting with chronically ill child - the unexpected aspects of motherhood really start to pile up.  Bean is doing wonderfully this Mother's Day eve...she is starting to do so much that a baby her age should be doing - chattering, cruising around our rooms both walking and crawling (walking still requires some furniture aids), clapping, entertaining herself with toys and household objects, and smiling a ton.  She is still wearing some 0-3 month clothes at almost 15 months old, but she is eating regular food, drinking formula like a champ and has no extraneous tubes to be cared for.  Amongst heart moms, I consider myself to be incredibly lucky...many have so much more to deal with then we do.  It seems strange to some to call myself "lucky" - but, I realize that I am just that - lucky.  But, I also realize there are things that are "typical" for me that other moms will never have to deal with.  Giving multiple medicines at 8 a.m. and 8 p.m. each day (with a few in between as well).  Getting blood drawn on a regular basis.  Visiting cardiologists and gastrointestinal specialists and being visited by physical therapists and developmental therapists.  Its all part of our lives now.  And that is why I loved the post, "a Mother's Day reflection" over at Our Transplant Journey.  It captures so much in just a few simple statements.  My favorites include:

I never thought I'd be in an emergency room watching a doctor and a group of med students smell my daughter's diaper.

I never knew how terrifying a simple stomach bug could be.

I never thought I'd know what an IEP is.

Those never knows become empowering "now I know"s soon enough.  And someone else out there who needs to know will seek out information and help from us and those unexpected nuggets of knowledge become small gifts of comfort and understanding that we can give to others.  Life may have been easier with a more typical child, but it would have been a life unaware - unaware of the gift a child is - whether she be well or not, the gift that knowledge is - whether it be sought out or forced upon us, and the gift that appreciation is - appreciation of milestones reached very late, of a birthday (or Mother's Day) spent outside of a hospital, of the amazing gift of life given to us by a total stranger who suffered a much worse fate than us.  I am truly thankful and appreciative this Mother's Day! 

Happy Mother's Day to ALL moms - may your motherhood journey, whether it was what you expected or not, be one of joy and love.  And to all those moms out there who have lost their children - to illness or to accident - including our donor's mom - my heart and thoughts and prayers are with you.  This must be a terribly difficult day, but your children are celebrating you somewhere and their love is still in your heart.  May you feel that love today and all your days.

A Year Ago...Yet So Very Far Away...

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".  Jason was at the hospital by himself for the third day in a row because I had some kind of laryngitis/cough thing going on (gee, think it might have been some stress?) and we just found out we had gotten into the Ronald McDonald House for the first time.  Here is that entry:

Mackenzie got promoted to the Third Floor today at Stanford! That means she is out of the PICU and into the "transitional" area. Jason tells me her new room is very nice and she is in a real crib now - her first crib! She is still handling the oral medications quite well and she got her first bottle feed today in over three weeks and Jason said she sucked the 10 ml down in about 30 seconds and they had to take the bottle away from her to make her stop drinking (they don't want to overdo it). So, I think we may be able to start bottle feeding every three hours again now. This is great timing because we also found out we got into the Ronald McDonald House, which is right by the hospital and will allow us to be there for most of the feedings, even in the middle of the night. Cara Cupp, my college debate partner and roommate has been incredibly gracious to let us stay at her place since we got here and its been great - only 20 minutes to the hospital and she even got us Ling Lings at Costco this weekend! :) But, now that Mackenzie is eating on a regular schedule, being closer will make things much easier. I just hope I can get over my illness as I can't move into the Ronald McDonald House until I am better since they have some of the outpatient kids staying there as well as families.

Stanford is going to go ahead and complete all the necessary tests/evaluations needed for a transplant. This way, if that becomes necessary, Mackenzie can be immediately listed instead of having to wait while the tests/evaluations are completed. We are all hoping that it never is necessary, but it is much better to be prepared if it does happen. So far, Mackenzie's heart is looking pretty stable - not good, because its still big and pretty weak, but as long as its strong enough to do the job its supposed to do, she can get by with the big, weak heart. One of the cardiologists last week said her heart was just "too filled with love" and needed to get a little smaller. Hopefully the big love continues even as the heart gets smaller and stronger.

I miss seeing Mackenzie! I am drinking lots of OJ-Mango juice trying to get better...so fingers crossed I get a voice back and lose this occasional cough!

Obviously, Mackenzie's heart did not stay stable for too long...but, that is a story for another day.  A year ago...we had hope...and today, we have hope for a totally different reason!

Tomorrow the local newspaper is coming to do a story on Mackenzie.  I had written them during April hoping to get something in during Donate Life month, but the reporter wasn't available until tomorrow.  But, as the reporter said, "The need for donors will not go away in May."  Truer words were never spoken...I hope the story goes well and I can get my house looking decent tomorrow.  

I Guess People Assume I'm "Crazy"

Okay, I realize that some people out there are going to tell me to "get a sense of humor" and "don't take things so personally" and in all honesty, I'm not really hurt or upset, but I am at least a little appalled at the level of ignorance being demonstrated on a so-called "mom" website.  Momlogic, who I just started following recently on twitter and whose bio on twitter is "Real advice.  Real stories.  Real moms." just posted a link to her "momstrosity" post titled, "10 Must Have Products for Paranoid Parents" and thinking it would be funny, I tuned in.  The first item was semi-funny - mostly because of the ears on it...then the second item popped up and lo and behold, it was the sign that I have hanging on Bean's carseat and stroller - its the one in the very upper-left corner of the picture included with this post.  It reads, "Please wash your hands before touching mine" and it is a little pink stop sign.  The entry on Momlogic reads"

Here’s a product for those nervous parents who never let another human being touch their baby … unless that person has scrubbed down like a doctor before surgery. My Tiny Hands tells the great unwashed to keep their greasy mitts off your pristine child. Do they sell one for Mom that says “Control Freak?”

Read more: http://www.momlogic.com/2010/04/10_must-have_products_for_para.php#tags#ixzz0kvjZwQGE

Awesome.  That is totally who I am - a control freak who has a pristine child.  Except not at all...I guess the lesson to be learned from this is one should never assume to know why a parent is doing something.  And it aggravates me that a mom's website would further the myth that these signs are nothing more than just paranoia to be ridiculed and ignored if the parent is not around (people thinking - oh, I don't need to wash my hands - that is just a paranoid parent speaking...and then touching the child - preemie, immuno-suppressed, whatever the situation).  I am just as bad as others at making assumptions about things and people, but we should all remember what happens when we assume things...

The story behind these pink stop signs is truly special and meaningful, and I for one am very much appreciative of the mother who took the time and risked the ridicule to create these signs.  Her daughter was born at 35 weeks.  She speaks on her website, My Tiny Hands about how "awkward" she felt about asking her friends and family, let alone strangers, not to touch the baby without washing their hands first.  She discussed RSV, which is what sent Bean to the hospital the first time and how flu season was such a threat.  I hope that people will take the time to visit the website and realize that these are actually very useful and for some of us parents, very necessary signs rather than just accepting how ridiculous and overprotective the request is.

Sorry for the rant...this one just touched something off in me!

Are you an organ donor? Make it known!

As everyone who has followed this blog at all knows, my daughter is a heart transplant recipient.  It still seems strange to say that, even though it has been 3/4 of a year since she received it.  It just seems like such a foreign concept.  Although I often heard of organ donation in the news and even from family and friends, I had never known anyone personally who had had one.  And although I have always had the little pink sticker on my driver's license (that used to indicate organ donation - it now is directly on the new licenses), I had never really thought much about organ donation and the impact that every donor can make on the world.  April is "Donate Life Month" so I wanted to remind all those who read this blog to consider becoming an organ donor and to make sure that if you make the decision to become an organ donor, to let those around you know!  The first reason is to make sure your wishes are known, the second is to spread the word and get those who have not considered organ donation to think about it and make a decision for themselves.

In case you have not read Bean's story, I will take this chance to share some pertinent details, as well as some related statistics.  Bean ended up at Lucille Packard Children's Hospital after being at two other hospitals, with a diagnosis of Idiopathic Dilated Cardiomyopathy.  Although some children with this diagnosis can be treated for years and years with drugs, Bean was one of the approximate 33% who end up needing a heart transplant to survive.  Because she was in the hospital, on a ventilator, she was listed as a 1A status with the United Network for Organ Sharing database.  We were told at the time that we should expect a long wait and that she may need a "bridging device" in order to survive the long wait.  A Berlin Heart was ordered for her and was kept on site in case her heart took a turn for the worse while waiting.  One thing you soon learn when waiting for a transplant is that there is no "usual" - each story is different.  But, the doctors and social workers still supply you with statistics in the hopes of giving you some idea of the range of possibilities.  According to Science Daily, up to 40% of infants die while waiting for a donor heart and the average wait is two months, although new attempts at using ABO-incompatible hearts are showing promise in decreasing both those numbers.  Because Bean was a preemie, she was extremely small (under seven pounds at the time she entered the hospital) and she also had the hardest blood type to match, so we were told that average of two months may stretch out to six months and even a year.   We settled in at Stanford to wait.  But, shockingly, a heart came in less than 30 days.  On July 6, 2009 we received word there was a heart that was compatible and had been examined by the transplant team and found to be a good candidate for Bean.  The surgery would wait until July 7, because other organs were also being donated and the heart is the last organ to be taken for donation.  I don't know how many other babies were helped and maybe even saved by these donations, but it still amazes me that some parent was able to see through what must have been crushing grief to think about others who could be saved by their tragedy.  I am so thankful for that decision.

Organ donation is a gift that gives exponentially.  Obviously, Bean was saved by organ donation, but the effect of that is felt and known by a myriad of people and will be felt for years and years to come.  According to UNOS data, today there are 106,937 people waiting for transplants and since January of 2010, only 2,198 transplants have been performed.  Consider the impact you can have by becoming a donor.

Please feel free to use Bean's story to spread the word about the benefits of organ donation and if anyone out there reading would like me to share Bean's story with an organization, on a website or anywhere else to help raise awareness, please feel free to email me.  I am in the process of becoming an Organ Donation Ambassador, but would love to share our story in any capacity.

I would also like to say to all the donors and donor families out there that I thank you.  I thank you for thinking of others and impacting others in a way that few others are able.  I would like to say that you are not only saving lives, but you are changing lives for many, many years to come with your gifts.  Thank you, thank you, thank you.

For Fun - Parent Job Announcement

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:

POSITION
Mom, Mommy, Mama, Ma
Dad, Daddy, Dada, Pa, Pop

JOB DESCRIPTION

Long term, team players needed, for challenging permanent work in an, often chaotic environment. Candidates must possess excellent communication and organizational skills and be willing to work variable hours, which will include evenings and weekends and frequent 24 hour shifts on call. Some overnight travel required, including trips to primitive camping sites on rainy weekends and endless sports tournaments in far away cities! Travel expenses not reimbursed. Extensive courier duties also required.

RESPONSIBILITIES

The rest of your life. Must be willing to be hated, at least temporarily, until someone needs $5. Must be willing to bite tongue repeatedly. Also, must possess the physical stamina of a pack mule and be able to go from zero to 60 mph in three seconds flat in case, this time, the screams from the backyard are not someone just crying wolf. Must be willing to face stimulating technical challenges, such as small gadget repair, mysteriously sluggish toilets
and stuck zippers. Must screen phone calls, maintain calendars and coordinate production of multiple homework projects. Must have ability to plan and organize social gatherings for clients of all ages and mental outlooks. Must be willing to be indispensable one minute, an embarrassment the next. Must handle assembly and product safety testing of a half million cheap, plastic toys, and battery operated devices. Must always hope for the best but be prepared for the worst. Must assume final, complete accountability for the quality of the end product.
Responsibilities also include floor maintenance and janitorial work throughout the facility.

POSSIBILITY FOR ADVANCEMENT & PROMOTION

None.  Your job is to remain in the same position for years, without complaining, constantly retraining and updating your skills, so that those in your charge can ultimately surpass you.

PREVIOUS EXPERIENCE

None required unfortunately. On-the-job training offered on a continually exhausting basis.

WAGES AND COMPENSATION

Get this!   You pay them! Offering frequent raises and bonuses A balloon payment is due when they turn 18 because of the assumption that college will help them become financially independent. When you die, you give them whatever is left. The oddest thing about this reverse-salary scheme is that you actually enjoy it and wish you could only do more.

BENEFITS

While no health or dental insurance, no pension, no tuition reimbursement, no paid holidays and no stock options are offered; this job supplies limitless opportunities for personal growth, unconditional love, and free hugs and kisses for life if you play your cards right.