I HEART SOPHIA

We all went to our favorite gardening center last night and picked up some tomato plants and some herbs to plant in the yard.  Sophia was like a kid in a toy store.  She was so into checking out all the different flowers and fountains.  She has garden boxes at school too and her class has planted some spring lettuce.  She informs us every day that they are to small to pick yet, but sometimes she gets to water them.  I am excited to be growing some of our own veggies this year.  I am sure Sophia will love helping take care of our “crops” plus she is just the right height to pull weeds. Last night when we got into the nursery, Michael shoveled some compost over to the area where I am doing some planting today and Sophia was so happy to be digging in the dirt and touching the big earth worms.  

I put the tomato plants and basil plants in the ground this morning and plan to let her water them all after she gets home from school if it is not raining.  I know this will thrill her because she tries to drown my shamrock plant in the house daily.  I hope you all are experiencing a nice spring in what ever part of the country you live in.  It is beautiful here in Kansas City.

Yesterday Sophia and I spent half the day volunteering at Michael’s work for their annual food drive.  Sophia was so cute and she had so much fun helping.  Shockingly, she actually was a really good helper.  She helped divide the cans and boxes and picked up all the plastic and paper sacks.  We also helped out by driving around picking up donated food.  Every time we made a stop to go pick some donations, she clapped and screamed “Yea mommy, I’m helping!”  I am glad that we spent the day volunteering.  I want to teach her that we should always give back to our community and be thankful for what blessings we have.  After we finished helping, we stayed at Michael’s work for a BBQ and tour of his work place.  Sophia was so well behaved and had such a wonderful time.  We will for sure volunteer our time to help out again next year.

I wanted to write a “Happy Mother’s Day” post to all the mothers and grandma’s out there who read this blog, especially mine.  It got me thinking that every day is kind of like mother’s day to me.  Sophia is a child who tries all the time to make sure that you know you are special to her.  At 4 years of age, she even sometimes compliments me on my painted toe nails or if I’m wearing a new shirt.  Having this child around me every day makes me feel like the luckiest mom on earth.  Just last night Michael called me into her room so we could stand there and watch her sleep in her sweet little bed.  The reason he called me in there was to point  out how beautiful she was in the evening light (Michael always tucks her into bed).  We just stood there and looked at her in total amazement of how amazing and wonderful she is.  Don’t get me wrong, I like the idea of having a special day just to honor mom’s but I try to appreciate every day the blessing of being Sophia’s parent.  I am so proud of the little person she is growing up to be, but cherish the fact that she is still so young and innocent.  She is such a good girl and it makes me want to be the best mother I can be for her.  

I of course want to mention that I could not be the kind of mother that I am today with out the support of Michael.  Because of his hard work, love and support I’ve spent the past four years at home (except when she’s in school) raising our daughter in the best way that I know how.  

Happy early Mother’s Day to all our readers of this blog.  As always we thank you for taking the time to check in with us an enjoy very much hearing your comments.

I’ve had a lot of people asking why I have not been keeping Sophia’s blog up to date lately.  The brief answer is I have had some health issues myself lately to deal with and consequently I’ve not had much time to post.  Since this blog is not about me,  I have chosen to not bore you all with my own personal stories of what it is like to deal with kidney stones and a bad back (please do not worry about me, my issues are mostly resolved).  Sophia on the other had is great.  Knock on wood, she has been pretty healthy these last couple of months for the most part.  She is really doing well in her preschool class and is growing up faster than we can keep up with.  She loves working on her lessons and  her gym class.  Her teacher is always telling us how great she can kick balls, make a basket, etc etc.  It is so cute, she has a best friend and they sit together at lunch every day and give each other hugs  when it is time to go home.  Earlier this week I went on a class field trip with her to this great place called Powell Gardens.  The kids all attempted to catch tad poles, but no one caught any.  Sophia got a snail and she could not have been more thrilled.  I really enjoyed the day with her.  

Thanks for checking in with us.  Again, I am sorry it has been so long since I have last posted.  I will try to do a better job of keep you all informed on how Sophia is doing.

You may remember, I posted about Alicia going to Washington, DC to lobby congress for Congenital Heart Defect legislation.  Well good news. The bill was introduced this week.

From Alicia’s Blog:

We did it…..for now
I received an email saying late yesterday the Congenital Heart Futures Act was introduced in both houses of Congress! In the Senate, Senator Dick Durbin of Illinois led the charge joined by Senator Thad Cochran of Mississippi. In the House, the bill’s lead co-sponsors were Representative Zach Space of Ohio and Representative Gus Bilirakis of Florida. We are thrilled that this groundbreaking piece of legislation has already received bipartisan support. To learn more about the bill visit http://durbin.senate.gov/showRelease.cfm?releaseId=309944
So what’s next? Like any piece of legislation, the Congenital Heart Futures Act has to get majority support in both the House and Senate in order to be passed. Please email your Senators and Congressman today to ask them to become a co-sponsor of this legislation, which is bill S. 621 in the Senate and H.R. 1570 in the House. It just takes a minute – here’s how you do it:
1) Go to http://www.senate.gov and http://www.house.gov/ to look up your representatives and their email addresses
2) Draft your email.
3) Make your letter personal to you.
4) Send your email. Be sure to include your full mailing address as well as your email address. Don’t use US mail, since thanks to the anthrax scare it now takes many weeks for mail to arrive in Congress.
Thank you again for your support.

I would appreciate it if everyone who reads this blog would send email to their senators and representatives urging their support of this important bill.

Valerie, executive director of CHD Families Association, and Jonathon, executive secretary of CHD Families Association,  graciously shared the story of losing their son Noah to congenital heart disease in this moving video.  The video was presented in front of a thousand people attending the AHA Heart Ball in Kansas City.  And generously and courageously introduced  by Valerie and Jonathan themselves.

…have tissues handy.

Video Link

note: click the AHA logo if video window does not open.

Any of you who have been through life saving surgeries with your children know the importance of the surgeon responsible for making the repairs. This is Dr. O’Brien. He has repaired Sophia’s heart three times. We got this picture at the 2009 American Heart Association Heart Ball in Kansas City.  We owe this man holding our daughter everything.

Patty and I just attended a presentation by Richard Hopkins, MD given for the benefit of our CHD Families support group .  Dr. Hopkins is Director, Cardiac Surgery Research Laboratories at Children’s Mercy Hospital in Kansas City and is responsible for some promising research is heart valve tissue engineering.

Sophia has had a cryogenic homograft conduit placed from right ventricle to pulmonary arteries twice since she has been born.  The first time the homograft failed by developing a pseudoaneurysm.  This caused a second surgery to replace the failed conduit.  

This type of homograft tissue, acquired from human tissue donors,  has a problem of becoming calcified over time in children’s bodies causing the valves within to fail within a few years.  This makes it necessary that they be replaced frequently throughout a CHD patients life which is an obvious shortcoming of the technology.

The research Dr. Hopkins is doing would take the same donor tissue and strip it of the cells that might cause problems in the recipients body leaving only a “biological scaffold”.  This scaffold would be “seeded” with multi-function cells harvested from the patient’s bone marrow. Tissue would then be engineered in the laboratory over days on the scaffold.  And when the engineered valve is surgically sewn into the patient, the same multi-function cells would continue to populate the structure of the valve basically growing a valve from the patients own cells.  In animal trials the engineered valves do not calcify or deteriorate over time at near the rate as the cryogenic homografts.

This research is being done right here at our hospital and directly affects the type of repair Sophia has had.  It is quite feasible that this biotechnology could impact directly the long term quality of Sophia’s life.  We were so thankful for this presentation and wish Dr. Hopkins and his research team much success in their endeavors.

There is a little bit of info about the research here.

Sophia did not start in her new class until Thursday this week.  The reason being that her teacher was ill and the class was being taught by a sub/assistant.  So the principal and I decided it would be best to wait until her teacher returned to work for Sophia to start.  I was really nervous the night before her first day.  We had been “talking it up” to Sophia that she was going to go to a new class for about 6 weeks now.  Santa even got her a new back pack to start using when she attended her first day of class.  

Her first day went great!  When I picked her up from school that day I talked to her teacher for about 15 minutes.  She said Sophia was a happy, social child who had no problem taking direction/instruction from her teachers and class mates.  Wow, I felt like the weight of the world was lifted off my shoulders.  Sophia was in a great mood while I was talking to her teacher and I could tell by the way she spoke about her day that she was really happy in her new class.  For the next couple of weeks the teacher plans to help Sophia understand the “flow” of her classroom and all the rules and responsibilities that go with it.  Michael and I are so thankful that she is in this class and are keeping our fingers crossed that Sophia will be able to be successful.

Sophia is recovering well at home.  Her cough is pretty minimal and it does not seems to bother her.  Really the only  symptom that she is still dealing with is she is low energy.  She is sleeping more than usual and taking a long nap every afternoon.  She kind of gets “tired out” quickly after playing.  I decided to send her back to school on Monday rather than push her to go this week.  The night we came home from the hospital she asked if she could go to school the next day.  Sophia absolutely loves to go to school.  She is still on an antibiotic for the next few days.  We are planning a low key weekend so she can continue to get lots of rest.  She will be starting in her new class (and wearing a uniform) when she returns to school next week.  I will be sure to post how it goes.