December 3rd, 2014 | Written by Jo
There is so so much to tell you about Clara and her life. Biggest news first, she has a beautiful, wonderful, chubby and perfectly healthy sister named Eleanor. Clara loves her, and not like in a tolerates her kind of way, she seeks her out when I’m doing dishes or cleaning and tries her hardest to kiss her. Sometimes this means she is laying on top of Eleanor, but that’s okay, Eleanor is a chunk, she can take it! We predict they will weight the same within the year.
As was predicted, Clara has a significant speech delay. She has been in weekly speech therapy for a few months now. When we started I just couldn’t wrap my head around how we were going to make a 1 year old try words. She could only say Hi, Mom and Da. Like Physical therapy, speech therapy seems to teach me just as much as Clara. We practice everything we are told and have adopted all the tips and advice our therapist gives us… and it’s working!!!
In the last couple weeks Clara started attempting all these new words: bubble, bath, baby, ball, bye, more, up, mom, da, hi, poop, pop and google. (Yes, she says google, it’s not practical but Joe got her to say it.) I see she is making strides every day trying new sounds and grasping the meaning of her words. She is also mastering signs for wash, more, please, hungry and water. I’m so proud of her, I make her work for things and she always will rise to the challenge, I’m so so proud.
Her heart is stable, that is great news for us. There is the same moderate regurgitation in her tricuspid valve, the impact being that her heart has to work harder. Because it’s not getting worse, they can wait until her next open heart surgery, her Fontan, to repair that valve. She is starting to turn blue more and more, and her naps are getting longer. This all means she is out growing the circulation she has. Her Fontan surgery could be done as late as next Christmas time, a whole year away. But if her oxygen Sats are dropping and she is big enough it could be sooner. They want her to gain a couple more pounds before though.
Sometimes I look at Clara and I’m surprised how little she is. I get so used to her hugging my legs and being my shadow, I don’t get a good look at her from a distance. She is at such a fun age right now. She loves climbing me, playing together and getting tickled or making faces. She laughs really easily and when she is in a normal 23 month old whine I can still get her attention and redirect her. She is amazing.
We covet your prayers friends! Prayers for continued heart steadiness, weight gain and progress in her speech would be so appreciated! Please also pray she doesn’t get sick while we are in CO with our family. A cold at altitude will put her in the hospital, and it happened to her last time.
We hope you have a beautiful advent season!