January 2015, updates. :-)

Our sweet Ry is thriving, she is 2 years and 6 months on the 24^th of January 2015! She had a cold last week and kicked its ass! She weighs over 27lbs now and her last cardiology appt went better than expected. We know intervention is on the horizon, but we will enjoy the no intervention lane until her next review in June. Developmentally, Ry has experienced no interruptions in her progress, she is the youngest child I have ever known to sing songs, learn and sing her ABC’s and fill in missing words in songs. She loves Itsy Bitsy Spider. She has seen her idol, Mickey Mouse, several times and will be spending a week with him and Minnie in April along with the rest of us!

She is in daycare full time now and we love it, she is progressive super-fast and some say she has the makings of a Mensa!  Smartest little heart hero I know.

She is talking and walking and running the world – she is a boss!

Thanks for checking in on her, more to come soon.

Ryleigh and Cael

Lots of love,

Lee Ann

Life in the no intervention lane

Hello All:
When it is quite, all is well. We have really been enjoying our no intervention time - free of appts! This is the way life should be, a heart mom could get used to this! Although we only have 1 more month of this lovely time. Ry has been growing and changing so much, really coming into herself. She talks so clearly now, saying 2-3 words together. So animated, full of life, and gosh so very happy. Since her last open heart Sept 30th, she has been doing great. I am always shocked when we get news that she even needs an intervention because she looks so good. She is a sleeper and must get that from her daddy, some days it is 9am before she gets up!

We go see her cardiologist and pediatrician again in January - so we are planning to just enjoy the holidays and as much of january as we can and then face whatever the next challenge is - which will likely be another cath to place stents in those pulmonary branches as the open heart did not fix those, at some point we are facing another open heart to fix her leaking valves, which also did not work from her last open heart, but I am not sure of timing but I think the cath will be in the next 2-3 months and the open heart in the next year to 2 if her heart continues to tolerate without compromise (trust me we are hoping it does, I hate open hearts!).

Here is a sweet fall photo of her that her daddy took. She is a true miracle and we just love her to pieces. She is the world to me! She is one amazing kid with a great personality, lots of character, and is so much fun, we always get compliments on how well behaved she is, happy, and just takes it all in, I think she is a mensa in the making - so smart for her tiny age of nearly 17 months (on December 24).

Love the Walkers!

Updates since August - she had an open heart!

Ry had her 2nd open heart Sept. 30. Her surgeons were hopeful that they addressed the stenosis in her pulmonary branches from cutting them open and patching to make them larger thus increasing blood flow, they also attempted to decrease valve regurgitation by sewing one leaflet closed on her 4 leaflet valve, in addition replacing the conduit that was showing gradient and finally removing the aneurysm from the 1st cath. 4 major things occurred! 

Her surgery was a grueling 11 hours long - it took 4 hours for them to get through the scar tissue. They upgraded her conduit from a 9mm to 14mm and were successful in removing the aneurysm. However, the stenosis and valve issues remain, the surgery was not successful in addressing them in any significant way that would allow us to stay intervention free for a few years. We had a follow up with her cardiologist October 24 and he informed us that she would have to have another cath. Since her surgery was just done and she was experiencing a lot of PTSD from the surgery, he thinks it's best if we give her some time to heal her heart and her trauma. So we go back January 23rd to get the new game plan. We are thankful for the 3 months off to enjoy the holidays and watch her grow and get a break from all the doctor appts. We are sad that she will endure another cath soon after our 3 month break and possibly another open heart next year to address the stenosis and valve regurgitation, which is severe at the moment, but her heart is keeping up so far. The good news is the stenosis might be addressed in the cath using stents, if so we may be able to avoid another open heart for a year possibly 2! She is currently on a heart med called enalapril and on a daily dose of baby aspirin. 

Sorry for not posting sooner, it's just been a whirlwind of events. Several of Ry's heart friends have earned their wings, while others continue to fight. This journey is never easy and while nothing prepares you for all the ups and downs, we maintain our hope that Ry will continue to be strong and be with us for many years to come. 

Much love 

The Walkers

Ry putting on her big girl panties! A true fighter!

Ryleigh the Super Star

Our sweet Ryleigh!