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.

Things I Love Thursday - Parents of Sick Kids

For this week's Things I Love Thursday I am recognizing a special group of people - parents of sick kids.  Being someone who has to spend a significant amount of time in a Children's Hospital, I see a lot of these parents, but there was one who struck me as particularly poignant this past Tuesday.  We were at the hospital for a biopsy for Bean (result was a 1A...good news) and my husband and I were waiting to be paged, sitting in the cafeteria.  I observed a woman with her little boy and my heart was both saddened and totally filled by her behavior. Her little boy was hooked up to an IV and he had access lines sticking out the sleeve of his outfit - multiple access lines.  His hair was thin and although he was small, he was probably between 2 and 3 years old.  I believe he may have had cancer and receiving treatment.  His mom was talking him into trying different foods - eggs, toast, banana, she was trying it all.  He ate a little, but not a lot.  His mom was very supportive and understanding and as she loaded him back in his special stroller with the IV hanging out behind it, I saw that she was pregnant.
The strength it takes to deal with health issues for ANY family member is large.  But, dealing with a sick child is especially draining.  But, parents who find themselves with a sick child reach deep down inside, to a place we never knew even existed, to find the strength we need to be strong for our children.  I just read a post on one of the listservs I am on from a dad explaining how he often cried alone because he knew he had to be strong for his wife and child.  These parents are really no different then any other parents out there, but they are placed in extraordinary circumstances, with no preparation or training or practice-run.  And time after time, they find themselves being parents, advocates, nurses, companions, mentors, and they somehow do it all well.  It isn't easy or "normal" or what anyone planned for their lives, but it becomes "what we do".  I know that I found solace and guidance and somehow, even love, from perfect strangers who were just unlucky enough to find themselves in a similar situation to mine.
So, I am thankful for these parents.  I am thankful for the ones who helped me with information, with support and with guidance online and at the hospital.  I am thankful for the ones who are able to smile and laugh with their children despite grim circumstances.  I am thankful for the ones who are able to treat nurses and doctors with kindness and gratitude for all they do for their children.  I am thankful for the ones who are able to give their children the best lives possible, despite their children's health problems and corresponding issues.  And I am thankful for the ones who, like the woman in the hospital, can show their children patience and love and support, despite what is surely their own exhaustion, despair and desire to run away to brighter pastures.  I realize that I am one of these parents, and I am thankful I was able to find the strength to do this and to hopefully do it well.  But, I realize that there were so many people out there helping us - family, friends, health care providers - and others are dealing with this or worse without that same support system.  I am thankful they can find the strength for the sake of their children and their families.  '
So, if you know someone who has a sick child or you know somewhere in your area that helps people with sick children - a children's hospital, a Ronald McDonald House, a Pediatric ICU, a non-profit organization...please try to find a way to give something.  Money, time, food, support, supplies...there is always a need.  And even if they can't thank you personally, your gift will definitely be appreciated.  The Ronald McDonald House we lived in has a wish list - so, if you're in the Bay Area and would like to give something, you can drop off new infant pacifiers, teething rings and toys for 0-18 month olds, as well as hand-held electronic games, i-tune gift cards, or other teen items.  If time is more what you want to give, they are looking for people to help with their 2010 Summer Camp.  The themes are art, cooking, outdoor fun, and science.  If you are not in the Bay Area, a google search in your area will help you locate similar opportunities!
Thanks to all those out there who made this situation just a little easier for us.  Even though we may not have had a chance to say thank you in person, we really did and do appreciate the support and love!

Bean Meets the (Debate) World

We spent the majority of the last week at the Cross Examination Debate Association National Tournament held at UC Berkeley. Bean was finally able to make it out to meet a lot of the people who have followed her story online and given us a ton of support (thanks again everyone...you really can't imagine what it has meant to us).  She had a great time and my only real worry is that she will be bored when she realizes she will not have hordes of people interacting with her everyday on a regular basis!

It was great to see so many people who I only get to see once a year at this tournament, and missed seeing last year because of Bean's delivery.  Bean was definitely a hit and seemed to make a lot of people happy, even if their tournament wasn't going great.  A few pics from our friend Marissa Grayson:

Marissa (photographer) and Bean at the hotel before the tournament began.

Taking a break between rounds - Bean naps between me and Karina...

Things I Love Thursday - Our Pediatrician's Office

In this day and age of health care woes and long waits to see doctors, I have decided to recognize how lucky I am to have a pediatrician (Dr. Asarian, Chico CA) who has NEVER made us wait more than a few hours to get Bean in to see someone.  They are always incredibly nice and even our transplant coordinators say how nice they are to work with.  Some may think that they are accommodating because of Bean's condition, but they were this way even when she was home the first time from the NICU and had no apparent health problems.  But, since her condition, they are great about having an examination room available as soon as we get there so Bean doesn't have to sit in the waiting room with any sick kids.  So, for my Things I Love Thursday, I am saying recognizing our pediatrician, Dr. Asarian and all of his staff for their wonderfully accommodating and supportive work with us!

No Feeding Tube, No Keys and a wonderful surprise...

The title gives it away, but the GI doc and the nutritionist in the GI department both agreed that Bean is NOT in need of a feeding tube, but is instead in need of more fat in her diet.  I definitely need to save this information to show Bean in the future, as its not often that docs are telling you to eat more fat in your diet.  They think she may have just got used to her hunger being driven by the steroids she was on post-transplant and for both her bouts of rejection, and now that her dosage of steroid is pretty low, she just doesn't feel the same level of hunger, so she doesn't eat as much.  So, they are prescribing some Periactin (an antihistimine that has a side effect of boosting appetite) for her and said to just make sure to give her very tasty and good fat fatty foods, like salted butter, avocado, etc.  They said to feed her whatever she likes right now.  So, she has eaten some chocolate pudding, tapioca (we went to Fresh Choice for lunch yesterday), cinnamon-raisin bread with butter, french bread with butter, a cookie (from Grandma last night), and her usual cheerios, baby food, baby cereal, etc.  She seems to be eating pretty well right now, so hopefully she will gain some weight in the next few weeks.  Her next biopsy is on the 30th of March, which gives her two weeks to gain some poundage!  I am just extremely thankful that I don't have to think about the prospect of a feeding tube!  Whew...


In addition to not having a feeding tube, we also have no keys to my truck.  It seems that between arriving at my parent's house after the doctor's appointment yesterday and getting ready to leave a few hours later, my keys left this universe.  That's right.  We made it home from the docs with keys, did not leave the house - really stayed in two rooms in their house - and we searched high and low and could not find them.  The only thing we could think was that I dropped them getting out of the car (a coffee cup fell out and started rolling away and I bent over to catch it...) and someone walked by and picked them up.  It sounds ridiculous to me...but, its really the only thing I can think of.  That or they were in the street and got run over and stuck in a tire and carried away - but that sounds even more ridiculous.  So, my hubby and friend had to drive to my parent's from my house - a two hour plus jaunt.  At least we had an extra set of keys...but, its still very weird...We didn't end up getting home last night until after midnight because of the key disappearance...long day...


But, when I got home, I was WONDERFULLY surprised by a spotless house!  Hubby and our friend spent yesterday cleaning, doing laundry, rearranging the bedroom furniture, unpacking the last of our moving boxes (yes, we moved in October and still had boxes), and even framing a great poster I bought while Bean was in the hospital in June and I never got framed.  It is now hanging above our bed!  The bed had the new bedding I had bought a couple of weeks ago on it (microfiber sheets - all I can say is get them!  So soft!) AND the mountain of laundry is now barely a molehill!  It was AMAZING!  Such a relief...and I really feel like I can get so much done now this week with that monkey of cleaning off my back!  They are truly amazing for doing that...


On a side note, I would like to share a resource with those of you who have young children.  I have been watching "A Place Your Own" on PBS and if you are looking for information, activity ideas, parenting advice, etc. it is a great resource that you should check out.  They have an online page as well if you can't tune in to the show.