"So, How IS Grace..."

We get this question all the time. And I love to answer for several reasons...

1. A year ago my answer was: "We don't know who she is yet."
2. 6 months ago my answer was "I think she's alright - I haven't seen an update for a while.
3. 2 months ago my answer was: "She's ok, she's kinda bluish but she's ok and surgery is soon.
4. 1 month ago my answer was: "She's good! She's still recovering but she's a very different kid!"
5. Today my answer is: "She's healthy and happy and thriving. Praise the Lord."

Cardiac-wise she's great. She has a "solid murmur" which they tell me is to be expected because anytime you change the natural (or born-with) mechanics of someone's heart it will make noise for a while - maybe for always. No one seems to be alarmed by it so we're not alarmed by it. Her next appointment with the cardiologist is at the end of August so we will know more then. We're so glad that surgery is behind us and so happy to have a baby who is oxygenated as she should be. After the first very scary 6 weeks - the second 6 weeks have been sooooooooo much better. She is full of energy, full of spunk, and gaining weight. We are over the moon that her heart repair is behind us. 

Pulmonary-wise, the experts tell us they are very pleased with how her lungs have been since the pneumonia she developed after surgery. Looking back at her health history (what we know about it anyway) it seems as though she has not gone more than a couple months without having pneumonia. The experts tell us that the longer she can keep healthy happy lungs, the better her progress will be because healthy, happy lungs grow healthy, happy new tissue and that's what she needs... healthy new lung tissue. So, although we are no longer cocooning, per say, we are trying to do what we can to make sure little ones that she plays with are well, and that people who interact with her are healthy. We don't have reason to believe that she is more susceptible to getting sick with colds/coughs/flus, it's just that in the condition of her lungs currently - it's more likely that a common cold would last longer, and the potential is great that it would lead to bronchitis or pneumonia. The longer we can go without some kind of lung complication the better off she will be. 

Trachea-esophagus-wise, she is the same but maybe better - we aren't sure. I haven't had to gag her for a while because something got stuck, but we are very careful to "slow her roll" on how much she stuffs in her mouth at once. Since surgery her appetite has tripled, and of course her favorite foods are "big kid foods" so it can get a little tricky. Her tracheomalacia (aka floppy trachea) which caused her to have very noisy breathing when we first met Grace is almost always unnoticeable to our ears. Sometime in the next few weeks she will have a rigid bronchoscopy (to get the best assessment of her trachea), her ears cleaned out (lots of wax), an endoscopy (to examine her entire esophagus), and a dilation of her esophagus where necessary. These are outpatient procedures done under general anesthesia.  

In mid September, we will have an appointment with the Airway/Digestive group at Children's. This sounds right up my alley. The team of docs all meet and consult and we talk. There's a speech pathologist as well and everyone thinks and works and makes one plan together. Hallelujah. 

At the end of September we will see the orthopedic who will evaluate her scoliosis. When her heart was broken - the scoloisis took a back seat. Now that her heart is fixed this really is the next "big" issue. She has a serpentine pattern in her spine and there may be some way to slow that down surgically sooner than later to avoid rods in her spine when she's a teenager. We shall see. I'm praying daily, like crazy, that God just heals it. I know He can and I would love nothing more for you to join me in that prayer. Doctors expect her trachea to improve as she grows. They expect her esophagus to be easily treated and improve. No one expects her crookedy spine to straighten out. That just doesn't happen.

You know what else "just doesn't happen"? Read the posts from the past 20 months. There's lots of things that actually happened, that "just don't happen".

Unless God chooses it to happen.

So, if you think of it and would like to join us in praying for Grace here's the specific things we are praying for:

1. A miracle in her spine - for it to be straight and blow the doctors minds. 
2. A healed, rigid, open trachea.
3. An esophagus that would allow her to eat all kinds of foods without food getting stuck.
4. Her heart murmurs be gone.
5. And most of all...that she would come to know the crazy love of her Heavenly Father who carried her through from lonely, to New Day, to being our daughter, to healing, and continues to amaze me with how loved this little girl is by so many.

Nothing is impossible when you have a Father like that. Nothing.

*Special thanks to Mike Batzler, photos courtesy of Solid 6