Thursday, January 15, 2015

January 2015, updates. :-)

Our sweet Ry is thriving, she is 2 years and 6 months on the 24th 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

Wednesday, April 9, 2014

Ryleigh Lately

So many of you are checking on Ryleigh this month, I am happy to report she is doing well, we are enjoying our intervention free time until July. She did a Disney cruise last month and loved it, she is a party animal, staying up until Midnight one night to party on the deck with her friends Mickey and Pals. She will be 21 months on the 24th. I am so happy she is growing into a beautiful young lady. The terrible twos aren't too bad just yet, but it might get worse. She will be starting preschool soon, hoping that helps her get some of this energy out.

She had her first ear infection and cold this season, she came through on top, kicking the ass of both! She did contract a tummy virus that had mommy covered once a day in yuckies, but after 4 days she rocked that too. The world is a dirty place!

Be well, another update will come soon!
Love the Walker's!

Sunday, December 22, 2013

Friday, December 20, 2013

Did you know...

Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.

Congenital heart defects are the #1 cause of birth defect related deaths.

Congenital heart defects are the leading cause of all infant deaths in the United States.

Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood.

Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood.


Tuesday, December 17, 2013

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!