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

We're back.  We have been lucky enough to stay out of the hospital since January of 2010, which for a young heart transplant recipient, seems to be a minor miracle.  But, our hiatus is over and we are back on "3 West" - or as those in the PICU and CVICU know it, the "step down" unit.  We are in the room next to the room we were in when Bean came here post-transplant, and I had to catch myself from walking to that door instead of our current room the first night.  Because although it seems like a long time since our last visit, it also seems like it was just yesterday.  Some of you may already know why we're back here because you are facebook friends of mine, but for those of you who aren't, let me give you a quick fill-in:

Bean had her regularly scheduled biopsy Tuesday morning to check for rejection.  Everything seemed to go very well and we were discharged around 12:15 p.m. and headed out to the airport to pick up my husband, who was flying in from a business trip in Chicago.  By the time we had done that and been on the road for about 45 minutes, she threw up all over the back seat of the car.  We stopped quickly at the next exit (again, my sister Dawn took one for the team - it was her car and she had gotten up at 4:30 a.m. to help me out by driving and going to the biopsy with me...what a thanks that is we gave her...) and cleaned it all up and changed Bean's clothes and were back on the road.  We got to my parent's house about 25 minutes later and gave Bean some water and tried to calm her down.  I noticed then that she felt quite warm, so we took her temp and it was right around 101.5!  The discharge sheet for biopsies say to call them if they develop a fever over 101, so we called.  After a few calls between the heart center, the surgeon and the transplant team, we were told to head back in for overnight observation.  She threw up twice more before arriving at the hospital. Since then, we have found out she has pneumonia and we will be here until at least tomorrow.  So, our Thanksgiving 2011 is being spent in "3 West" of Lucile Packard Children's Hospital (LPCH).  We are very thankful for LPCH, but not very thankful to be spending Thanksgiving here!  The real kicker is that my JP (my husband) has gotten sick (cold) and can't come to the hospital now because this wing is full of immuno-compromised kids.  So, I am at the hospital with Bean solo today.  A good friend was so good as to bring by Thanksgiving dinner from Boston Market for me at lunch and the hospital has a special dinner for Thanksgiving tonight as well.   So, I'm well taken care of food-wise and it was great to socialize with someone who isn't two years old and whiny and sick!

"3 West" is an interesting place.  As I said before, it is the step down floor for the PICU and CVICU, so there are always a number of transplant patients - new recipients, those waiting for transplants and those like Bean who are in here a number of months/years post-transplant due to other complications.  There are also those with surgical heart repairs healing, lung and respiratory issues, and other medical issues.  There are very small babies all the way up to teens.  There are very vocal patients (not unusal to hear the belligerent screams of toddlers or preschoolers dealing with nursing visits, needle sticks, etc.) and very quiet patients.  There is constantly traffic through the halls as a lot of patients are told they have to walk around in order to get discharged.  Many are dragging IVs or carrying drainage tube containers or feeding tube bags.  Some are being towed around in red wagons by parents and still others are being carried by parents.  Many are wearing masks due to their immune systems being compromised.  I must say that most people look exhausted.  It is exhausting on this floor.  In the PICU and the CVICU, the nurses are assigned one, maybe two patients.  Here, they are typically covering two or three rooms and their job is to make sure that parents and caregivers are ready for what they will experience at home.  So, they encourage parents and caregivers to do the work - feedings, diaper changes, giving medicine, etc., but they are having to do a lot of training.  And there are sleeping couches in each room because unless you have a very good sleeper and/or feel comfortable with the possibility of them crying or being uncomfortable until the nurse checks on them (versus the nurse being in the room with them as in the CVICU or PICU), you really need to plan on being here overnight.  Its not a great place to sleep, but it is better than a chair.

I never sleep really well when I'm here because there are constantly people in and out of the room or Bean wakes up and cries a bit, and I feel like I need to comfort her immediately (how horrible it must be to wake up in this room with an IV in your arm and now oxygen in your nose?).   So, I'm up and down all the time.  But, the nurses are usually very nice.  They try to be as quiet as possible when entering, doing their work ups and exiting.  The first night, the nurse brought me cookies.  They always ask what they can get for you.  So, although they are training you for dealing with the realities of your medical situation once you leave the hospital, they are very supportive and nice about it.  And with us, there really isn't any training going on, because we have our routines down for giving meds and I've dealt with just about all the possible things (keeping diapers for weighing, keeping track of liquid and food intake, where the extra blankets and pillows are located, what all the machines are and what the different alarms mean.  The only thing I had forgotten is how to disable the alarm on the IV machine, but that has now been refreshed!

Overall, LPCH is pretty good place to be if you have to be in a place like this. I'm thankful this Thanksgiving that we are lucky enough to have a team of doctors and nurses looking after Bean's health and although I would much rather be visiting my in-laws this week and eating too much for my own good and then eating more...I am happy that we have access and ability to have Bean here and to be sure that her health remains as good as it has been.  We hope to go another two years (or maybe even more) without an overnight stay in 3 West, but if it turns out that we have to be here again, we will accept that.   Taking care of Bean's health  is priority number one for me.  And this place seems to do it right.

We did get some great news today while sitting in this hospital room - the biopsy result was another zero!  That was two in a row now...for the first time since transplant!  This could mean that Bean's immune system will be weaker (since it is a sign that the anti-rejection drugs are suppressing her immune system a bit more effectively now).  Which means we will have to be a bit more vigilant when dealing with any health issues around our house.  But, we'll take that...and take the zeroes!

Hope everyone out there had a good Thanksgiving!  

Milestones Met as Time Flies

September 2009

It sometimes seems like a lifetime ago that we were finally coming home from the Ronald McDonald house in Stanford to a new (to us) home in Chico and life was becoming a new normal.  It wasn't too long before the developmental therapists from our Far Northern Regional Center began to visit once a week.  For Bean, it was play time - she got to play with different toys, sing songs and have someone devote 100% attention to her for an hour.  She loved it.  Our first therapist was pregnant and went on maternity leave...and we were sad.  But, her replacement ended up being great as well and new toys were introduced and the attention was still there, so Bean still loved it.  Watching the therapists was also a benefit to me.  I learned the developmental milestones they were looking for, I learned the toys and activities that would help Bean reach those milestones and I soon acquired toys that worked on the same skills. I wouldn't say that I "worked" with Bean on the skills, but I definitely "played" with Bean in the hopes of her reaching her goals.  And every report, she got closer and closer to her adjusted age (because of her being a preemie, she was adjusted to her gestational age).  

Well, as Bean's third birthday draws nearer (how did that happen?), a bittersweet realization was reached last week as her latest evaluation was being performed.  Bean has officially "caught up" - she is considered normal in almost all areas of development (she is a bit behind in fine motor skills and self-help skills, but these vary greatly by age, so it isn't considered to be a problem as long as they are close to their age)!  At three, the Regional Center transitions clients into the local school district.  But, we will not be transitioning because Bean is now not in need of additional services.  I say bittersweet because the attention and the training was great to have.  I think it really helped me help Bean and to cope with some of her challenges in a constructive way.  I was not afraid to challenge her because I saw her being challenged by someone else and saw her enjoying the challenge.  That confidence is harder to find on your own, I think.  But, I am so very thankful that she has been able to catch up - physically (she is walking normally for her age and she is even on the growth charts for weight now - 3rd to 5th percentile), linguistically (she's actually ahead in this area - not totally shocking since her parents are debate coaches and she spent a considerable amount of time, once out of the hospital, at speech and debate tournaments and even a two week debate camp last summer), and developmentally.  I hear/read so many stories from other families whose children are struggling because of their time in the hospital, their time on the ventilator and their time with a lack of full oxygenation from their heart problems.  We have truly been blessed with Bean rebounding from all those things in a relatively quickly and almost surprising way.  And for that, I am eternally grateful.  

I can not believe that we came home from the Ronald McDonald house almost two years ago!  Those first few months were a blur, but I still remember the incredible feeling of being able to dress Bean up in her flower costume and answer the door for Trick or Treaters in our own home:

In some ways, this seems like a lifetime ago - she has changed so much and done so much.  But, in other ways, it seems like not that long ago.  Last year, she traded in the flower costume for a cow costume and looked like this:

Which is not that dramatic of a change from the previous year...but, here she is a few weeks ago while on vacation:

The star of the show in Gigi's sunglasses...and the change from the previous year is pretty dramatic!  In two years she has gone from a teeny-tiny, tube-fed, broviak line wearing little girl to a now-just-tiny, food eating (and still three bottles a day drinking), line-free little lady!

And we are thankful everyday for her shiny, happy face (even when it isn't so shiny or happy).  She is loving life for the most part as a two year old and has not shown too many signs of the terrible twos yet (we're hoping THIS is not a developmental delay!).  She loves to talk, is really into starfish and jellyfish, can say "leopard shark" clear as day, and has fallen for Kipper the Dog (who can resist that adorable British accent?). She loves to play games, has a memory like no other (much better than mine now, which seems to be going downhill fast), is fascinated by bugs, loves loves loves her Music Together classes ("Songs!" is her first demand upon arriving in her car seat), is outgoing to a fault sometimes (I think she has scared other little kids more than once by barreling up to them and saying "hello" or "hold hand" if they are older kids), would stay in a bathtub overnight if it was allowed (but would demand "more water" intermittently during the night), and has just discovered a love for KidsPark.

Overall, I would say we're living a pretty normal life considering our daughter has a heart from another baby beating inside her right now...she takes medications (only five now) three times a day, she has to have an echocardiogram done about every two months now (something I have never had done in my lifetime - and probably something most of you have not ever had done) and a heart catheterization done about every four months now (something which terrified me the first time she had it done, but has now become quite routine) and we have to be careful of germs, especially during flu season (and flu season cometh...very soon).  Other than that, we're pretty run of the mill.  And that normalcy is pretty much a miracle!  Our miracle...

Heart Birthday Number Two

Tomorrow marks Bean's second "heart birthday".  She was born on 2/19/09, but she received the gift of life on 7/7/09.  Last year we had a little celebration with balloons and cake, but this year, I am on the road visiting family, so we will probably only mark the day in a small way.  But, I wanted to be sure that I posted here and told everyone reading this to please say a prayer and give thanks to the family that so generously made the decision to save lives that day in July 2009.  I know that they will mark this day (or one in close proximity to it) in a much different way and I want to always remember that.  I am so thankful for each day I have with the Bean.  These last two years have been such a gift to us.  And I believe that Bean has been a gift to others as well, and I hope she will continue to have the bright and shiny personality she has currently.

Life for and with the Bean will never be totally easy.  There will always be the meds and the doctor appointments and the anxiety of facing the unknown.  But, life with the Bean will always be totally satisfying.  Knowing that each day is one she may not have had if she had been born just a decade before she was (because of medical advances that allowed them to keep her alive while waiting for a heart) or if the donor family had not chosen to donate their child's heart.  There will be the same frustrations that happen in any family, but in the back of my mind I will always know that those frustrations are better than no frustrations.  And although I can't predict the future and I realize that anything can happen, my intuition tells me (and my hope drives me to believe) that Bean will do wonderful things in her life.  I'm not sure what those things will be, but I can't believe that this great gift was given to her without it being meant for something great.

Yesterday was our country's birthday and Bean and I celebrated with my husband's family.  He is away in Michigan working this month, so he was not there and we missed him.  But, it was good to be with family and friends and celebrate the holiday.  Bean may have overdone it a bit:

This was at 2 p.m. in the afternoon!  She rallied for the evening, but didn't like the proximity or decibel level of the fireworks out in front of the house, so we retreated to the bedroom for a little video watching.  But, she definitely had a great time with family friends' kids, Aunt Sydney and Uncle Jeremy and Gigi and Papa!  She got to "drive" the boat for a bit, be the subject of many pictures with her new friends, and get a lot of attention!  So, overall, it was a great day for her!

Prior to coming to the in-laws, my friend Sylvia came to Chico for a visit, which was great (and that very patriotic 4th outfit the Bean is passed out in was from her!).  In an attempt to do something local and outdoorsy, despite the heat, we decided to visit a waterfall.  My original plan was to hike in 2 miles (easy, flat hike) following the  directions I found online.  But, when we pulled over at the marker for the waterfall, we found it to be right there, down a not-so-flat hill.  In the interest of saving the 4 mile round trip hike and getting some good photos, we decided to just brave the incline and see the falls.  It was a little challenging with the Bean and my dog, Bella, and Sylvia decided to stay up towards the top of the hill versus going on down where my friend Theresa and I went to take pics, but overall it was a great experience.  Bean has not stopped saying "waterfall" for the past three days and loves to see the pictures!  I will definitely have to put more waterfalls in future travel plans!

Tomorrow we leave my in-laws and head north, but not quite home.  I am participating in a new book club on Friday night in Berkeley, so we will be spending tomorrow, Thursday and Friday-day with my family in Davis/Bay Area.  Lots of family time for the Bean is great and it gives me a little bit of a break from being one of her only sources of entertainment (thanks to Theresa and the "winning" pool, she has been whisked away for an hour or more on an almost daily basis - I sometimes join them, but not always).  But, I will be very happy to get home next week again and spend some time in my own bed!

I will leave you with some pictures of the Bean, most of them in or around "wah-ter", which is currently her favorite substance other than formula - both to drink and to play in.  I grew up as a competitive swimmer, competing in my first swim meet at the age of 3 1/2.  I would not be surprised if Bean follows in similar footsteps, as she is already a pool lovin' fiend!  But, we shall see!  Hope you all are enjoying your summers and my heart will be with our donor family this week and always for giving us memories like these:

Excited to be leaving for the pool!

Looking like a little surfer girl!  Chico may be inland, but this is definitely coastal wear!

Drying out and warming up after her first swim in a "big" pool!

She obviously isn't the only family member who loves the water!

Relaxing a bit with Daddy before he leaves for work for five weeks!

Working on our summer gardening venture...

In the pool with Theresa...she has progressed to NOT wanting help when in her floaties!

Playing with her Busy Bugs set and lovin' it!

We have been busy bugs ourselves these past few weeks and summer is flying by (where did June go?!?).  We hope to get in a few more great experiences, reap the bounty from our gardening attempt, and even catch a wink or two of sleep along the way!

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...

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!

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!