Sunday, July 17, 2011

Second Annual Heart Workup Tomorrow

Tomorrow morning we'll be at Lucille Packard Children's Hospital for Bean's second annual transplant workup.  This is where they do all the same things they do at all her other biopsies, plus they check heart pressures and for narrowing and/or hardening of the arteries.  The cath takes a bit longer than normal, so the recovery is also a bit longer than normal, which can make for a long day.  But, it does not require an overnight stay, which I am thankful for.  I am interested to see if Bean will be any more accepting of the appointment this time.  Last time, she was a real bear to deal with during the hour and a half of pre-op we have to do.  I am hoping she is a little less of an angry Bean tomorrow, but I am not holding my breath on that one!

I did an event in Oroville for the California Transplant Donor Network this week.  It was a health fair and I just stood at a table and encouraged those who were not registered to donate to do so and to thank those who are already registered.  I worked with a couple whose son was a donor 11 years ago.  Their story was so touching and they are truly amazing people.  Their son was only 24 years old and died of a brain aneurysm during his sixth month on the job as a police officer in Sacramento.  They are Latino and the dad said that when his son came home from the Police Academy and said he was going to register as an organ donor, he told him no.  He thought it was wrong.  His son told him about the speaker who had come in to talk about organ donation and that he felt strongly about it.  A little over six months later, his dad had to come to terms with that discussion...since then, they have met the recipient of their son's lungs and their son's heart.  And they are obviously huge advocates for organ donation now.  Their son was the first Latino in 10 years to donate his organs in that organ procurement area.  Since then, the numbers of have really gone up in that group, but their son was unique and his father has become a big advocate to honor their son's memory.  His father has also learned how to sew quilts and has made four quilts using the patches from law enforcement agencies all over the United States.  Here is a picture of us in front of the one he had displayed at the health fair:
They were incredible people and I'm going to begin collecting more patches for them as I travel around for Speech and Debate and other things.  If you would like to send me a patch from your local law enforcement agencies (police, sheriff, etc.), just let me know and I will get you my address and send them on to this dad. His quilts have traveled around for both law enforcement and organ donation and he plans to continue to make more of them.  They have inspired me to write another letter to our donor family as it took them five years to feel comfortable meeting the two recipients they have met...and they are so appreciative of the ability to do so.

So, we are off to the hospital tomorrow and although it won't be a fun experience, we are thankful to have that experience, as we are each and every experience we are able to have with the Bean.

Wednesday, July 6, 2011

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!