2.29.2012

A Wonderful Busy Normal Life

I love to report that we've been too busy for me to sit down and post.  We've been busy outside, we been busy attending birthday parties, we've been busy with our everyday life.  And I literally am thankful for every moment of our crazy days.
Monday we were in Dallas for labs, Xray, etc.  We received a great report.  There were no major changes in her lab work so we stay the course.  A lot of people ask me about her medication doses.  That is one of the most common questions I get.  Ry is still on 28 doses of meds a day.  This is down by about 3 since we first transplanted.  She takes meds 6 times a day and there are 17 different medications.  She takes them wonderfully, I'm always proud of her!

Here's her daily med box.

We've been able to get out and about a little more lately as it seems most of our family and close friends have been healthy lately.  I want to say to all of those who we've run in to in the grocery store or at a party or restaurant, thanks for always respecting our space.  And to our friends who have let us know if they were a little under the weather so that we did not risk any exposure.  It's nice that folks remember and respect that Ry can't hug and kiss all over you, or that touching her isn't exactly ideal.  I immediately recognized and appreciate those who care enough to think about her health.  It has enabled us to venture out and to allow Ry to get out without her mask.  We of course never get far without another squirt of hand sanitizer!  Ry knows the drill and obliges. 
So here are some of the fun things we've been up to.  We were thrilled to be able to attend birthday parties for Ry's cousins.  Four of her five cousins have birthday's within 3 weeks of each other.  So we managed two parties in one weekend for all of them.  It was AWESOME to see Ry have so much fun with them.  She loves her cousins so much.  They are her best friends.
Here she is headed home on Sunday after an exhausting weekend of celebrations.  She's really tired, but just never lets up.  I foresee curfew problems with this one in the future...


After a busy weekend of socializing, we spent this past weekend on a much slower pace.  Gilly left for South Texas on Saturday afternoon, so Ry and I had a girls day.  We worked all day in the flowerbeds!  She helped me every bit of the way.  Her new most favorite past time outside is to water something, anything!  She watered a few flowers, filled her "water tank" and washed rocks!  Luckily it was a beautiful day so it didn't matter that she got a bit wet.  We still have lots to catch up on outside, but Gilly and I have a great helper, so I know we'll get it done. 
After a day of hard work, Ry and I washed up, put on our PJs, ate pizza and watched the Lion King.  I got out our slumber party blanket and some pillows, but Ry's idea of a slumber party looks more like this...

That's my girl!
 A (princess) lawnchair and a
 cold beverage in the drink holder.
Life's been good.  We really are so incredibly blessed.  We are so thankful for our happy girl.

2.15.2012

A SweetHEART of a Day

Ry and I celebrated most of Valentines Day in Dallas.  She had a scheduled Biopsy, Heart Cath, Echo, Labs and EKG.  We received wonderful news that her wedge pressures have come down!  I pray that next month they will continue to show improvement.  This has been the only concerning number in each of her post transplant caths.  But we were thrilled for the good report and now wait for biopsy results today. 
It was another long day that started by arriving at the hospital at 6:15, but once again Ry did great.  We delivered a few valentines to the friends we saw there yesterday, but were anxious to get home to spend some valentines time with Daddy.


Our "Valentine" from Dr. Z.

If only I could get her to look at the camera...


Ry made a crazy monkey for Valentines
 We are thrilled that as we made our way through the 4 month post transplant milestone, this also means that our appointment frequency will be dropping a bit.  We now will head to Dallas every two weeks for checkups and labs and only one a month for a cath and biopsy!  I'm not sure what we'll do on the weeks we stay home, it will be two extra days of the week that we've gained here.  I'm looking forward to it!
For now, we're just loving life at home and count our blessings every day.  We are so grateful!

2.08.2012

CHD Awareness Week

Feb7-14 is Congenital Heart Defect Awareness Week.  I have always been a slacker and really participating and hope to get better in the future.  If you follow this blog you are probably more aware than most and have now understood a little of what it's like to be a part of the heart family.  This year I will leave you with this picture.  This is our face of Congenital Heart Defect Awareness.



We are thankful Ry was diagnosed early and that we were able to seek the medical attention she needed.  I hope more awareness of the many Congenital Heart Defects will lead to more answers and improved outcomes for children.