2010 Recap Carnival - First Lines of First Posts

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!

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...

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

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...

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.

Smart pill technology for transplant recipients

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. I have a seen a few conversations about rebellious teens who refuse to take their medications and parents wondering how to be sure they have on a daily basis. I actually have a student whose friend just had to get her second heart transplant primarily because she decided she didn't want to take her meds for a while during her teen years. I hope we never have to go through it, but I am given hope by this article on a new technology that allows doctors to know when patients have or have not taken their meds:

amednews: Smart pill technology on Novartis radar :: Nov. 23, 2010 ... American Medical News

The article introduces the dissolvable microchip that is in the drug - when the pill dissolves in the stomach, the chip sends a message to alert those who need to know that the pill has been taken and digested. I'm sure there are parents out there on some of the lists I am on who would love to have an email each day that lets them know the pill has been taken! Just a sense of relief if nothing else.

Novartis is planning to introduce it in their transplant medication (it didn't seem to list the medication in this article), and then future applications may be used in cancer and cardiovascular drugs. Technology is sometimes scary, sometimes amazing, but I must say that I am so very thankful there are people out there doing research in how to use tech effectively in health care - obviously, Bean's life depended on a lot of that technology (and will continue to for the rest of her life). It gives me a brighter hope for the future and alleviates some of that future worry I try to avoid!

A Familiar Story...But, Still Amazing

This video is from the BBC - across the ocean, but so similar in circumstances to ours. When I watched it, it made me cry. Tears of joy for the family and baby, but also tears of relief that we were the recipients of such a miraculous gift of life. Life has definitely been getting the best of me lately. I have a case of what some call "mom brain" - can't remember much of anything, sometimes from minute to minute. I feel stressed out much of the time...and things haven't been totally easy. But, when I watch videos like these, it makes me remember that no matter what else happens, Bean is home with us, healthy and mostly happy (although the terrible twos are starting to hit I'm afraid) - and that needs to take precedence over everything else. A wonderful gift has been given to us and we need to make the most of it. I need to remember that.

If you have not already become a registered donor, please consider doing so!

Donate Life Organ & Tissue Donation Weblog