Friday, December 31, 2010

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?

Friday, December 24, 2010

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...

Sunday, December 19, 2010

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

Saturday, December 18, 2010

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!

Friday, November 19, 2010

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

Friday, November 5, 2010

Bean's Halloween

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.  We had some professional pictures taken at the Picture People on Friday - and they turned out beautiful!  They are located in just about every mall (we got Bean's first professional pictures taken there between hospital stays, but in Bakersfield) and because I am a horrible person about planning ahead, the fact that they seem to be able to fit us in when we walk in the door is great for us.  Our photographer this time was great with the Bean, who can be a handful when she is the center of attention!  I have mixed in the pictures from the session throughout the blog post.  If anyone wants to order any pictures (friends and/or family who may be reading) and I haven't sent you the online ordering form, just shoot me an email and I can do that - these are copyrighted, so if you try to enlarge they get distorted, but I thought they were cute, even if small.

It was like Bean was in a parade as we made our way through the mall to the picture place!  She was, of course, quite noticeable in her cow costume, so people were commenting and saying how cute she was, and she was waving at them and blowing kisses to them and had to stop and smile and babble to people along the way.  It was actually quite ridiculous and slightly embarrassing.  She is one of the biggest hams I've ever seen!  And definitely not shy in any way!
On Saturday, we didn't do much Halloween related, but my MIL and I went downtown for the farmer's market, but ended up skipping it because of the rain.  We went shopping instead, checking out my favorite stores in downtown Chico - Made In Chico, Powell's Sweet Shoppe, Bird in Hand, and The Silver Sandbox!  We didn't buy much, but we got some great ideas for Christmas and I did get Bean a cute bib that says "I want my Mummy!" and a ceramic wall hanging that says "Witchy Woman" for myself!  I love Halloween!

 We then went to lunch at the Sierra Nevada Brewery - another of my local faves.  I didn't drink any of their world famous beer this time - just had a fantastic pork tostada that was sooooo good!  Bean wasn't liking sitting around so much after her busy morning, so we didn't stay long, but if you're ever passing through or visiting Chico, be sure to set aside a meal to visit the brewery.  They offer tours as well during certain hours!
 On Halloween, we went to the annual Treat Street celebration downtown.  We ate for the first time at the new Burgers & Brew and had a pretty tasty meal in a relaxed, but nice atmosphere!  After we ate, we took Bean around to the local merchants that were handing out candy and we all loved seeing all the fun Halloween costumes the little ones were wearing!  Once again, Bean had the time of her life waving at people and seeing all the other little kids.  It was great fun, if a little exhausting!

 We stayed home for the evening hours, and Bean helped me answer the door and hand out treats.  She was so excited every time the doorbell rang or a knock was heard on the door!  She would run with me to grab the bowl of candy and take a close look at all the Trick or Treaters, then say "bye" and blow kisses to them as they were leaving.  It made Halloween all the more fun for me!
 We ended the weekend on Monday morning with breakfast with Grandma and Grandpa at Country Waffle.  We were sad to see them go, but will be spending some time with them during the Thanksgiving break, which is coming up really fast (how has it already been a week since Halloween weekend began?)!  Thanksgiving won't be quite as much fun as Halloween, but maybe it will encourage Bean to eat a little more.  Her nutritionist visited again this week and she had gained 4 oz. in the last 3 weeks, which isn't bad, but isn't great (esp. since part of that 4 oz. was a wet diaper).  But, as you can tell from my report of Halloween weekend, the rest of us more than make up for her poor eating habits!  :)
 She is progressing quite well developmentally!  This morning at her therapy session she was matching toys with related pictures, which is pretty advanced according to her therapist. She is quite the smarty-pants most of the time, but I worry about her becoming something else that begins with Smart...hopefully she keeps her pleasant disposition!



Thursday, October 21, 2010

Still No Zero...

Well, we got the latest biopsy results yesterday and Bean is still sitting at a 1A status.  It was a little disappointing.  Our transplant team nurse, Nancy, was the one who called and she had not spoken with our cardiologist yet, so we should get a call today letting us know if we are making medication changes because of this.  Nancy said that the 1A status isn't THAT bad and that actually many transplant facilities view zero and 1A as clinically the same, but Stanford has seen some correlation between chronic 1A status and problems with the coronary arteries developing.  But, Bean just had her annual exam where they test all the pressures in her heart and the elasticity of her arteries and they found everything to be in great working condition, so they aren't as concerned as they would be if they were seeing things changing in her heart function.  So, that's good news.  But, I was definitely let down by the news.  Nancy had not talked to our cardiologist yet about what medication changes we may make, but they did take Bean off of her aspirin.  This is nice because it was one that we had to cut a tablet and grind it up and mix it with water every time, so the med regime got a lot easier with its removal!  Now we only have the lipitor that we have to cut, grind up and mix with water. 

Nancy mentioned that they may try putting Bean back on the cyclosporin that she was on before.  I can't say I'm very excited about that.  That med has a lot of side effects, many of which are cosmetic.  It makes the recipients hairy, a little bloated looking (its called moon-face - cheeks get big and the face rounds out), and for babies it can make teething difficult because it tends to cause rather dramatic gum swelling.  So, they're teeth literally get stuck under a bunch of extra gum tissue and they often have to have a lot of extra dental work because of it.  We think her early experience with cyclosporin (she was on it for about three months post-transplant) is why her teeth came in so weird (molars first, now only one on the bottom - she did finally get four on the top).  Don't get me wrong.  If it makes her heart work better, then of course I'll take it all, but if its going to be the same as with Prograf, the Prograf seems much better side effect wise.  And she was never a zero when she was on the cyclosporin either, which makes me think that it wouldn't necessarily change things.  But, we'll see. 

On one good note, we do get to go three whole months before the next biopsy!  That is one month more than we've been having between them for the most part.  It still isn't what we were hoping for.  The biopsies are definitely getting harder.  She got upset yesterday as soon as they started "bugging" her with the blood pressure taking and pulse ox and stethoscopes, etc.  She was just not wanting to be poked and prodded.  So, there was lots of screaming and crying and kicking.  Its exhausting trying to keep her from losing it every time they have to do something.  Then, when she comes out of the biopsy and wakes up, she gets REALLY pissed off because she has an IV in (she still wants to rip that out immediately upon seeing it - they have to put a little protective board over it and tape it up like a cast to keep it in) and a pulse ox on (which they also had to tape on because she kept taking it off) and all the leads for her vitals stuck to her.  And she has to lay still (supposedly - she doesn't do this well at all) for 1/2 hour or so while the wound heals.  So, she sprung a leak because she was crying/screaming so hard it started her cut bleeding again.  She finally calmed down for a while when we gave her a bottle, but it was not fun.  And I have a feeling its going to get harder rather than easier until she's a lot older and can understand a little better what's happening (and even then, she may not like it much...).  I do know that from now on we can not get up and drive from Chico in the a.m.  We got up at 4 a.m. and left at 4:30 a.m. and got stuck in traffic on the way, so we were late (stress), then drove all the way back and got home around 6 p.m.  That is one long and exhausting day!  So, from now on, I think I'm going to try to get a room at the RMH for the night before or stay with my parents who are about an hour away from Stanford.  The traffic is just too much to deal with before that kind of stressful day!

Today we are going to the Pumpkin Patch with the Chico Mothers Club.  I'm excited to go and think Bean will have a great time.  If I can find my camera (I have misplaced it somewhere and I haven't been able to locate it), I will take lots of pics!  She did recover well from her biopsy - she was great yesterday and had a very active day.  We went to the library for story time (where she is a star - she always goes right to the front in front of the story leader and claps and dances the whole time), then to play group at our local outdoor kids' park, Caper Acres where she climbed stairs, played in the sandbox, slid down a slide a few times (well, 1/2 way down, I would lift her up on it as far as I could reach and then hold her as she slid down - she loved it, but wouldn't slide down from the top on her own), and got knocked down by another little girl playing there.  Actually, she got knocked down by bigger kids twice yesterday - at the library, a little boy wrapped his arm around her neck and basically threw her down.  Luckily she was on the carpet and he wasn't much bigger than her, but it definitely scared her.  His mom was very apologetic, but it makes me glad she isn't in daycare.  She is just so small compared to kids her age.  Then at Caper Acres, the cutest little girl with blond hair was walking across the playground and her mom was trying to get her to leave and Bean walked up to her (like she does just about everyone - she is very social), and she just reached out and pushed Bean in the chest and knocked her down.  It was so weird.  The mom tried to get her to apologize, but it was not happening.  She just sat there tight-lipped.  Again, Bean wasn't hurt, but it definitely shocked her and she cried for a while.  So, big days for Bean...going places, seeing things and getting knocked down!  :)

Hope everyone out there reading is having a good week and is looking forward to a good weekend.  It is supposed to be raining here this weekend and although I'm ready for fall, I'm hoping the rain isn't too hard as we'll be at a Speech and Debate tournament all weekend and can't avoid going out in it because of that.  But, I am happy to see fall weather finally coming! 
'

Monday, October 18, 2010

Biopsy Number...who knows? Tomorrow!

Well, we have yet another biopsy tomorrow for Bean.  I have a feeling it will be a long day, but not nearly as long as her last biopsy day (wow, was that ever a doozie!).  I hate to say it, but I think these days are just going to get worse and worse as she gets older and more aware of what is going on. She still doesn't seem to react poorly on arriving at places - for example, we get blood drawn here in Chico quite often and she is still perfectly happy when we arrive and even when we go back to the room where they do the draws.  She doesn't get upset until they actually tie the rubber band thing around her arm...and boy does she get upset then!  She has a great set of lungs...  But, then, once they pull the needle out of her arm, she immediately calms down and will blow kisses to the woman who does the draws (who loves the Bean, which is nice).  So, she doesn't hold a grudge either.  But, she doesn't like to be restrained and during recovery from the biopsy she is supposed to keep relatively still.  Last time was especially bad because she had the longer biopsy for the annual, so maybe it won't be so bad this time.  We shall see.

We are hoping and praying for a zero this time as it would mean we would be able to stretch out the time between biopsies a little more (maybe move to 4 - 6 months in between instead of this every 2 month schedule we're on).  It would be nice for her not to have to have them so often and it would mean we would space out visits to Stanford a little more as well. I'm glad they are keeping a close eye on her and trying to figure out the rejection levels...but, I am also starting to worry about access.  I guess the biopsies aren't as likely to do damage like the lines she had in during her hospital stay, but usually there are four access points they can use to do these biopsies - one on each side of the neck and one in each groin.  Bean has one access point - in the left side of her neck.  The rest of her access lines have a blockage (not sure what it is causing the blockage - I was unclear on whether its a clot or scar tissue or what) that will prevent the cath line from getting through.  Thankfully she has the one access point - and none of the doctors seemed to want to discuss with me what would happen if she lost this access point (one of them told me, "we're just going to think positive and say that we won't need to worry about that"...which luckily has worked out to this day).  But, it worries me she is having so many of these biopsies through that access point.  I hope it holds up.

Other than the low-level chronic rejection (which is what they call her repeated 1A status in the clinical reports), she is doing quite well.  She is a ball of fire.  She is babbling constantly, has a vocabulary of about 15 words now (and many, many more in her own head - but we can't understand any of it), can imitate just about any farm animal, and is a total ham.  She definitely seems predisposed towards performing for people...  On the homefront, she is a horrible sleeper and often spends about half the night in our bed because she seems to sleep better there once she wakes up in the middle of the night.  Which is frustrating, but I suppose it could be worse.  Her size is a challenge in doing all the toddler training things - even with a step she can't reach the sink to wash her hands because she is too short.  She is still not quite 28 inches tall and according to the nutritionist last week, she weighs 17 lbs 10 oz.  But, she thinks she is 6 feet tall and 340 lbs.  She is not afraid of much of anything (well, okay, she's a little afraid of balloons - she likes to look at them from afar, call them by name "baon", but if one gets near her she really flips out) and loves to explore - everything! 

Speaking of the nutritionist, Bean is now on Duocal (thanks to the other heart moms who sent me their extras...we're going to look into getting a prescription for it, but we're set right now with three cans) and benefiber (to try to firm up her stools a bit).  I may start calling her Benjamin Button because she is on so many old people's meds!  Lipitor, blood pressure med, now Benefiber...kind of funny.  Anyways, the nutritionist says she is getting too much protein (because she gets most nutrition from her formula, which is high in protein, and for a while chicken was her main food source as well), so we're currently trying to diversify her diet.  She has been off her Periactin for three days now (ran out a little early - more coming today) and I really can tell the difference in her eating.  She doesn't have much of an appetite without it.  She is still primarily on formula for nutrition, which is also frustrating, but I want her to keep gaining weight.  We did discover she loves chocolate, so I got some Nutella yesterday and I'm going to try some of that today.  I'm sure we'll figure it out...it will just take some time. 

Well, I have many, many things to do today to get ready for our day away tomorrow!  If you read this and think about it, please send some thoughts of "ZERO" our way tomorrow!  I'll update later this week when we get the results.

Tuesday, October 12, 2010

Pumpkins, Flowers and Cows, Oh My!

Its that time of year again!  I have decided that this is the week to begin our preparations for Halloween!  One of my favorite holidays...I was inspired by a post over at The Mustard Seed to take a look back and also a look forward.  Her post, Fall In Love...with a lil Pumpkin was a look back at their first healthy Halloween with their son Jude who has a chromosomal abnormality called Partial Trisomy 17 and a heart defect known as Hypertrophic Cardiomyopathy.  I decided it might be nice to do a similar look back at Bean's first Halloween here! 

Last October, we had just been released from the Ronald McDonald House and finally headed back to Chico after months away!  So, we had moved to a new house (we had moved out of our last house and put our things in storage thinking we would have to wait much longer to find a heart for Bean...we are so thankful that we were able to find one so soon after being listed...) the middle of October and I definitely was excited to be home with Bean for Halloween (I love Halloween...such a fun holiday!).  We took a trip to Max's Miracle Ranch - a very special place run by a family whose child has had heart issues of his own - and they now run this ranch for families in similar circumstances, do fund-raising for them and get group tickets to local events for the families and their kids.  They are truly special people doing special things!  So, we went and visited their pumpkin patch, saw some pigs and met the family and some friends who were there.  I am definitely planning on visiting there again this year now that Bean is old enough to recognize the animals and have some fun!  But, here we are in the pumpkin patch - it is crazy for me to see Bean so small and puffy (from the medication she was on at that time).  What a difference a year can make!  But, she was still awfully cute!




Bean weighed a little over 10 lbs at that time.  She is now not quite double that - somewhere around 18 lbs. now.  So, she is still pretty small, but just looks so much older!  Here she is at our first pumpkin patch visit of this October (last week - it wasn't Max's Miracle Ranch...just one that we drove by a sign for and I HAD to go and get a pumpkin or two to get the season started!):
 Bean with her magical white princess pumpkin!

 Bean and I with a pumpkin that is probably 20X Bean's size!

 Bean and our friend Steve...enjoying their hats together!  Bean just learned how to say hat this week...she still doesn't like wearing them, but she loves saying their name!

It was a quick visit, but Bean loved picking out a pumpkin her size and she now knows what a pumpkin is and likes to go get hers when we ask for it.  She did try eating it, so there is a small bite mark in it now, but luckily I had washed it when we got home just in case she decided it might taste good. 

Of course, the most fun part of Halloween is dressing up!  Last year we couldn't really get out much because she was still on heavy doses of predinisone and other anti-rejection medicines.  This year, we are a little less afraid to wonder out into public (although flu season will always be a scary time of year for us), so I have a few Halloween celebrations on my schedule for us to attend - most of them through the Chico Mothers' Club.  It should be great fun and we'll have a lot more pics this year.  Last year, we did dress her up for Halloween and she helped us hand out candy to people who came to the door.  She was a cute little flower:
 Those eyebrows and cheeks were really something - getting off the cyclosporin has really brought them into proportion with her face now - but the puffy cheeks looked great with the flower costume! 


This year, she will be going as a cow!  She has the moo down (it was the first animal noise she learned - she now knows a whole lot of them - more animal noises than words), and I can dress up as a farmer!  :)  She is walking like a champ and loves to carry bags, so she is ready to roll for this Halloween! 

So, I'm going to try to get our Halloween decorations up tomorrow and start getting more in the spirit of the season. It isn't easy because it is still summer weather here and doesn't seem like October at all.  But, we'll make it work! 

How are you all celebrating Halloween?  Tell me about it and link to your blogs in the comments!

Wednesday, October 6, 2010

Doctors & Hospitals - Resource for Parents

Doctors & Hospitals

The link above will lead you to a great resource! For those who are unfortunate enough to be looking forward to hospital stays and/or multiple doctor visits, there is some great advice. There is also good advice for those who have a young child taking medicines (how to get them to take it, etc.) and the administrative things you need to consider for health care of a child. I HIGHLY recommend this as a bookmark for anyone as you never know when you will need the information and it will make you feel better to have it when you need it! I subscribe to the Kids Health newsletter and although a lot of the information is for children much older than Bean, I have found a number of things in it to be very useful.

Sunday, October 3, 2010

Perspective on Health Care - Primary Care Physician

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.  I have been through a lot of workplaces in my lifetime and I don't ever remember even checking to see what the health insurance was, let alone what the co-pays were or prescription coverage.  As long as there was some kind of health care, I was fine with it.  But now, I have to be concerned.  I went to our benefits fair for the first time this year, just to ask whether any changes were happening to our health coverage and if so, what they were.  (Luckily, there were none - we're paying more each month, but considering I was on furlough for the entire year last year, my take home is still more than it has been, so we'll take it.)  I've never been to a benefits fair for any reason other than getting free stuff before!  So, I follow the health care discussions and try to figure out how new laws may change things for us.  And I am definitely someone who has concern over the high cost of health care.  But, I think its interesting to hear different perspectives on the issue.  My debate team did a panel presentation on health care a few semesters ago, and I remember someone in the audience introducing himself as a local doctor and discussing how the health care issue was making him struggle as a physician - I had never thought of things from the doctor's perspective prior to that.  After all, I had fallen for the urban myth that all doctors were rich and they were part of the problem, not the solution, for cost in health care.  But, that night changed my view.  As I was reading through a medical newsletter I receive, my eye landed on a similar story and I thought I would share it with you - just in case you are still believing the myth of he rich doctor overcharging for services...


The blog post, simply titled, "Caring" was written by Dr. Rob, a primary care physician in the Southeastern U.S.  He writes of his experience as a physician, adjusting to the new "patient-centered" health care (of which he is a fan), but he also writes of his challenges:
So why is it, then, that those of us who try to be patient-centered in our care end up getting penalized?  If the days of the doctor-god are over, then why are we still paying premium dollar for those huge egos?  Why do we pay more for technology than humanity?  When I face the continued threat of declining reimbursement (don't forget, the next SGR battle will be over a 30% drop in Medicare reimbursement) I feel angry.  I am the point of care, not cost.  I am cheap. I spend my day trying to keep people well, trying to find cheaper medications for them, trying to avoid expensive procedures and consultants.  How am I rewarded for fighting the tide of spending?  With increased expectations, increased fear of the future, and decreased pay.  I see the gratefulness of my patients, and that keeps me from fleeing altogether; but I also face the callous cuts by CMS, the increased micro-management by the insurance industry, and accusations of being a "greedy doctor" for not wanting my pay cut.
 First off, this is not the first time that I have heard of primary care physicians getting major cuts in the amounts they are reimbursed from both the government and insurance companies.  But he talks of other things that I was not so aware of and that make me kind of sad:
 In the past few weeks I have done three "mobility evaluations" for people who are trying to get scooters.  They have done this in response to the commercials or direct phone calls from the companies that provide these devices.  Beyond that, I have seen a huge increase in the number of ludicrous requests by these companies who prey on innocent and ignorant patients.  They are leeches.  They are bloodletters removing the life-essence from a dying patient.  Yet their presence is growing.
We all laugh at those commercials where the person is cruising around the lake on their scooter, but I didn't realize the implications of those commercials.  I had never thought beyond the ludicrous commercials to the ludicrous requests they may be causing.  He goes on to discuss the complexities now involved in prescribing medicine - something I can definitely related to when looking at the costs on our monthly medication bill (thankfully, we only pay a $5 or $15 copay for Bean's medicines, but I see the actual cost charged to the insurance company as well - and for some of them, wow...).  He closes his post with a plea:
We have a bunch of hands being plunged into the coffers of healthcare, and yet we are penalizing those who are too busy caring for patients to do so.  I honestly get depressed when I see all of the waste around me and yet face huge cuts to my reimbursement.  It shows people don't understand.  It shows people don't care.  Do you want doctors who care?  Then put your money where your mouth is.  Stop rewarding the parasites.  Stop throwing money at the turnstiles.  Stop rewarding the spenders.
There are some of us who still care, but it's getting harder to stay that way.
I know that there are lots of problems with health care.  I know that we have been the lucky ones - getting the emergency and long term care that Bean needed so desperately when she needed it without problem and without much cost (comparatively speaking to the total cost) to us.  But, I also realize that doctors are so important to us.  I respect them and I am indebted to them.  I do not want them unfairly vilified or unable to maintain their practices due to a flawed system.  So, I thought it important that I share this story and hopefully raise awareness about the struggles of our primary care physicians and pediatricians who are the first line of defense in maintaining our good health.  Let's figure out a way to reward those who care and make this system better for everyone involved - the patient, the doctor, and those who work in the health care industry.

Tuesday, September 14, 2010

Back to Blogging Day One: Back to the Beginning

In the interest of being a little more consistent about my blogging efforts here, I am participating in a week-long Back to Blogging program from the Sits Girls blog.  I am a day late in doing the first post, but I figure better late than never and I'm just going to do it and move on to the second day when I have the time (maybe today, maybe tomorrow, maybe later in the week).  The sponsors of the program are Standards of Excellence, Weststar Kitchen & Bath, and Florida Builder Appliances.  So, thanks to them for sponsoring the Sits Girls in giving me the swift kick in the ______ that I need!

The first blogging assignment for the week is to re-upload the first blog entry on this blog so here it is, from November of last year:

A Year of Thanksgiving...and Soul Searching


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!  I am choosing today to start this blog because I have a lot to be thankful this year - and I feel like I could spend a whole year saying thanks.  So, this starts my year of Thanksgiving...
My daughter is just over nine months old, and four and a half months ago, she received the greatest gift that she will receive in her life - a new heart.  She was suffering with Dilated Cardiomyopathy and she was in cardiogenic shock, ventilated and barely awake (to keep her from pulling out the ventilator and to let her heart rest).  We spent almost three months in a Ronald McDonald house before getting to come home a little over a month ago.  Needless to say, our lives have been turned upside down.  We have to give Bean medications three times a day.  We have to flush a broviac line (something like a semi-permanent IV) each day.  She has a lot of doctors appointments that are about three and a half hours away from our home.  We also have to take precautions not to expose her to germs - she is immune-suppressed and the Swine Flu has added a whole new layer to that worry.  My husband (pictured with Bean) has had to give up one of his two jobs, meaning we are extremely low on money. Although our lives are changed forever, we are incredibly thankful - for Bean's new heart, for the wonderful care she received from the Doctors and Nurses at Lucille Packard Children's Hospital, for the availability of a room at the Ronald McDonald House Stanford for only $10/night during our stay, for the incredible generosity and love of friends and family during our time at the hospital...the list goes on and on.
But, even as we are thankful, we also have to realize that there will be serious challenges.  We will need to figure out additional forms of income.  We will have to get our lives more organized in order to get done what we need to get done while still dealing with additional medical responsibilities for Bean.  We will need to deal with insurance debacles that are threatening to put accounts into collections.  We will need to become aware of medical issues that come with Bean's medications and treatments.  And because of the experience we have had during this, we will need to find a way to give back - to make sure that others going through this or similar things will have resources they need available to them.  Whether that be through charity fund-raising, sharing information on this blog, or doing speaking for the causes close to our hearts, I haven't figured out yet.  But, I do know that I HAVE to find a way to give back.
So, welcome to A Second Heart.  I hope you will find something that is helpful to you!

Well, there it is.  It really doesn't seem like that was almost a year ago...but, in other ways, it seems like it was forever ago!  We are still struggling with many of the same issues, although the insurance debacle was handled and there was no collections that resulted...thankfully!  We are learning new things about Bean's care each month it seems...and I'm sure that will continue for her whole life.  I still need to get more organized.  We are still constantly looking for additional sources of income and often short on money and time.  We are still driving three and a half hours to doctor appointments (in fact, I have one tomorrow for heart clinic) on average once a month.  We have been lucky in that the germs have not caught up with us yet - no flu last year, just a slight cold that she got over very fast.  We are hoping for the same this year!  I hope that this blog has been of help to someone and I am always surprised when someone writes to me saying they enjoy reading it!  So, I want to blog more often, get more people to visit and read and hopefully give something to them of value in return for that visit!  I want to include more pictures, more information about transplant and pediatric heart problems, especially cardiomyopathy.  I want to blog about the things I learn along this journey in the hopes I can make that learning curve faster and easier for someone who is following a similar journey.  And in addition, I want to highlight our wonderful life with Bean, which I know is a gift that we can not appreciate enough...

So, I'm happy to be doing this program and I hope that it will help me do just what the blog says it is designed to do:  "get me back into a posting and commenting routine now that summer is over."  I think I could say that I am hoping it gets me into a posting and commenting routine that I never once established since this blog began!  Its a challenge...but, I feel motivated!   

Wednesday, August 18, 2010

I Have Bad News and Good News....

Which do you want first?  Don't you hate when people say that?  I do...but, in this case it is true.  I'll do the good news first...and tell you that the bad news isn't really THAT bad.  It is more what I would call disappointing news than BAD news...Bean's annual workup showed that her new heart is working well and that the arteries seem to be holding up quite well.  All of which is great news...and to accompany that great news, here is a picture of Mackenzie after her pre-op Verced...feelin' pretty giddy...

Now to the bad news...(to visually represent this, I give you Bean after the cardiac cath, when she woke up with a Kedamine hangover that made her very, very grumpy and difficult to console):
So, the disappointing news was that she is once again at 1A status.  This is not devastating news as it is the lowest category of rejection, but in the end, it is still rejection and that is not good news.  She has only had one zero, which means she has pretty much been in some level of rejection almost the entire 13 months she has had her new heart.  So, we are back on the treadmill of changing the anti-rejection medication dosage, blood tests (next week), clinic appointment (one month from now) and biopsy (two months from now).  We were really hoping to get on the more regular post-transplant schedule of spacing out clinic appointments and biopsies by six months or more, but such is life and we will take it as it comes as long as the Bean is healthy and well. 
In addition to the 1A news, they also found her magnesium level to be very low (a chronic problem with her - and she already is on a pretty big dose of magnesium three times a day, which causes diarrhea, hurting her chances of gaining weight and also possibly ridding her body of the anti-rejection medication before its fully absorbed).  So, they decided to give her an IV treatment of magnesium while she was there.  This meant a four hour short-stay unit visit with an IV attached.  Bean was already ticked off because we were trying to restrain her to keep her arterial line site from bleeding (the line was out post-surgery, but we're supposed to keep her leg straight and vertical to prevent it from "leaking") - she hates being restrained and really wanted to be held.  After a while I picked her up and held her a few times because her crazy kicking and rolling moves HAD to be more threatening to the site than my holding her vertical for a few minutes...but it was a long and arduous couple of hours of trying to maintain her position.  Then she had this additional line going in which she kept wanting to remove (for those of you who were Carepage followers, you might remember her early experiences with removing tubes - ventilators, IVs, central lines - she's done it all).  So, the short stay nurse put socks on her hands and taped them down and she thought that was pretty special and proceeded to parade about the short stay unit clapping her socked hands and waving with me or her aunt behind her carrying the IV pump (those are my feet in the background):

So, we are back home again, with a lot of upcoming appointments - pediatrician, endocrinologist, PT and developmental therapy this week, blood draw next week, GI appointment the week after, now a clinic appointment two weeks later, and a biopsy the middle of October.  We are also working on scheduling an appointment with the regional center's nutritionist and occupational therapist to get her eating evaluated.  Its like a full-time job just figuring out my schedule!  :) 
I would like to end on a good note...according to the pre-op scale, Bean gained 9 oz since last month.  I'm not sure that its accurate - I'm interested to see her weight tomorrow at the pediatrician, since it will be the same scale as last time.  Hopefully its even MORE weight gain...but, I'll take the 9 oz.  And finally, a fun picture from Bean's first swimming experience this past weekend in the hotel pool...hope you all are well!

Monday, August 16, 2010

Summer is Officially Over! Annual Heart Cath Tomorrow

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!  But, its now officially over - I start back to work on Wednesday with meetings and office hours on Thursday and then classes begin on Monday.  So, I plan to be posting on a more regular basis now that I will have to have a schedule of some sort and I will fit blogging into that schedule.  I will do another post (or posts) with some recaps from our summer and all of our adventures - of which there were many!  Bean has totally changed since the last post in June!  She now has a lot more teeth (although still not many in the very front - she has two on the right top and one just barely breaking through in the middle bottom, but the rest in the front are still hiding out)...she is walking everywhere...and although she is not really talking yet, she makes animal noises like a champ!  She has been a walking, babbling baby for the past two or three weeks and it makes her a barrel of fun to be around! 

Tomorrow is Bean's annual heart cath.  Although she has had many heart caths, this one is a little more extensive since it is her "annual".  Her regularly scheduled caths include the biopsy for rejection, but her first one included a coronary angiogram - this one will repeat that test to make sure that she is not suffering from rejection issues that may be more long-term than the biopsy is designed to test for.  She is on medication to lower these risks, so our hopes is that they detect none, but she will have this done every year for the rest of her life to catch any problems early on.  We are hoping that she will repeat the same zero for rejection that we had last biopsy and all will look good - that will mean less clinic visits and more time between the heart caths, which would be great for both her and us!  The drive to Stanford is long and with the hospital visit tucked in there, those days are extremely tiring - so the fewer we can have, the better! 

In addition to that, we have our first endocrinologist appointment this week - where we might find a source for her lack of growth.  No guarantees on that front, but it is possibly a hormonal issue which they may be able to solve.  I am getting used to her petite stature, but it would be nice to get a little fat on her before winter and cold/flu season rolls around as that fat is her reserve if she gets sick.  We dodged the bullet this past winter, but she was not nearly as active as she is now, so keeping her isolated will be much tougher this year.  So, figuring out how to have her gain some weight would be great.  She is 18 months old and is wearing mostly 3-6 month clothes (some pants have to be 0-3 months - others even newborn, although they look like flood pants, they fit her best in the waist).  We are getting lots of wear out of her clothes, but we'd prefer a healthier weight!  She is still seeing her developmental therapist through the Far Northern Regional Center, and will soon be consulting with the nutritionist and the occupational therapist about her eating - just to cover all our bases.  We got good news from the eye doctor (she has a "lazy eye", especially when she gets tired) - no surgery!  She may need to wear glasses because she is far-sighted (how they can tell that in a baby I will never understand), but he is definitely not advising surgery for her.  Such a relief...

I think that about covers this week in the life of the Bean.  Again,  I plan to do some "What I did this summer" posts as school gets started (just to be able to revisit summer will be good for those first few weeks of total chaos at school) and I plan to do some additional posts on health, medical and educational resources for parents.  I'm sure I will come across some other things to post about as well!  So, stay tuned!  We should get some basic results from her cath tomorrow afternoon after the surgery, so I will try to get something posted then, but it may have to wait until Wednesday when I get back home...it all depends on internet accessibility!  Either way, I will update in the next couple of days!

I hope you all had a great summer and are looking forward to a good fall as well. 

Sunday, June 27, 2010

Teeth, Feet and Food

Note: I spent a while writing a post and then lost it during the posting process...a little frustrating! Hopefully I remembered to include everything in the replacement post below!

Sounds like a pretty horrible combination doesn't it? Well, its all HAPPENING at the same time, but are not necessarily related! Bean has had one tooth in the side front of her mouth for a while - we have taken to calling her snaggletooth because of it. But, she is now getting a few molars in the back and it has definitely been a bit of a pain for her over the last week. Luckily she has not run any fevers and has only has had a slight runny nose for a couple of days. So, overall it has not been too bad. But, she has definitely been more moody and has not been sleeping all that well. All of her teeth are one side of her mouth right now and they aren't really lined up at all, so chewing is an issue for her. The order in which her teeth are coming in is also strange - usually kids get their front teeth first. But, post-transplant Bean was on Cyclosporine for anti-rejection medication. The medication has a number of side effects, which includes thickening of the gums. So, this could be the reason we aren't seeing any other teeth yet - a mom on one of the transplant email lists I'm on said it took her son nine months after getting off of Cyclosporine for his gums to recede enough to see his teeth (they were there, just under the thickened gum). So, hopefully, we will see more teeth soon. She came off of Cyclosporine in late October/early November. It would be nice for her to be able to chew her food!

And hopefully she will start getting more excited about the prospect of chewing food! The GI docs put her on an antihistamine to stimulate appetite, but it doesn't seem to be helping with her food intake. For a while, she was a pretty good eater - she liked cereal (both baby and Cheerios), sweet potatoes, carrots, yogurt. And she ate pretty good two or three times a day. But, she has now started to refuse to eat from a spoon. Finger food only. Which would not be bad if she had teeth to chew the finger food, but as it is, she eats very small pieces, very slowly and often tosses many pieces over the side of her chair to our dog. So, her intake is not very much for each meal. Because I don't know if this is just a phase she is going through or some oral aversion she has developed, I have requested an occupational therapy evaluation from the regional center. Her cognitive therapist says she definitely has a slight tactile sensitivity. She gets anxious when she is on grass because it pokes her, she refused to touch a spiky gel-type ball toy the therapist brought a couple of weeks ago and she HATED pudding painting because of the pudding on her hands. I figure its worth getting her evaluated to make sure there isn't some aversion we should be dealing with early on. Luckily she still loves her bottle and drinks formula well, so she gets plenty of calories and nutrition that way. And she is still small enough that her drinking a bottle doesn't look ridiculous. But, at some point, I would like for her to be eating more food and drinking less formula! Really, we are lucky considering she was on IV feeds for most of her first six months of life. A lot of heart kids have to keep feeding tubes in because they don't adjust well to eating after so many months without it. But, I would feel even luckier if she were eating food better!

Finally, her feet. Don't worry - they have nothing to do with her food! She just took her first few steps the other day and I thought I would include a short video! Enjoy!


video

Sunday, June 6, 2010

California Heart Connection Picnic Coverage

Although I was not able to go this year, I am really hoping to attend one of these picnics in the future (when Bean is a little older and can actually enjoy the activities and social connections).  The California Heart Connection, a group started by two heart moms in Southern California, hosts an annual picnic for the families of children with Congenital Heart Defects.  This year's picnic was the 10th one hosted by the group, with 80 families in attendance.  The picnic offers families a way to connect with others who are going through similar experiences, but in a non-clinical setting.  Its a great opportunity for both parents and children and a nice article was written about it in the Orange County Register, "Hope and help for ailing hearts."

In addition to hosting the picnic, the California Heart Connection has some great resources available on their website, ranging from help with insurance, support groups, printable forms, reports on research, etc.  It is not only applicable to those in California, but much of it could be helpful to anyone dealing with a CHD!

Positive Developments for HLHS Babies

Hypoplastic Left Heart Syndrome (HLHS) is one of the most complicated and serious congenital heart defects out there.  Treatment includes a series of surgeries, the first coming almost immediately after birth, called the Norwood procedure.  If this procedure fails, a transplant is necessary.  A new study shows hope for reducing the number of deaths and transplants needed in children born with HLHS.

The study, conducted at the Children's Hospital of Philadelphia, compared results between the traditional surgery - "a modified Blalock-Taussig (MBT) shunt, which carries blood from an artery branching off the aorta to the pulmonary artery" - and a new procedure - "he Sano procedure or the right ventricle-pulmonary artery (RVPA) shunt, links the right ventricle to the pulmonary artery".  The results were promising, with a 74% of infants with the RVPA shunt surviving and not needing transplant compared to only 64% of those receiving the traditional surgery.  These results are promising, although work needs to continue as the RVPA showed a higher rate of complications requiring "unintended interventions, such as needing stents or balloons to keep the shunt open."  But a 10% higher rate of survival without transplant is pretty promising.

For more information, you can read "In Infant Heart Surgery, Newer Technique Yields Better Survival in First Year of Life," at Forbes.com.

Saturday, June 5, 2010

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!

Saturday, May 22, 2010

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! 

Saturday, May 8, 2010

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.

Tuesday, May 4, 2010

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.