Foto Friday 2, vol. 17 - "We are a family again."

These words (from Preston, of course) as we all sat in the backyard together on Monday, splashing, soaking and relaxing in the kiddie pools. The depth of his statement was not lost on John or me as we exchanged a quiet look and tear-filled eyes. We know his words did not mean that he thought we weren't a family the whole summer, just that he was so grateful we were finally together again. Sweet, sweet boy... who then promptly splashed Gracie and me.

The hospital journey through photos...

August 4th: Daddy's sunglasses shielding her from the bright lights just before her PICC line was pulled and another peripheral lab draw.

August 4th: After her PICC line was pulled... exhausted, on a Dopamine drip to get her blood pressure up and so very sick.

August 9th: A sibling reunion

August 18th: Playing out of bed for the first time in weeks. She delighted in this toy long enough for me to take pics and then was done! You'd think she'd have been exhausted, but she went several days in a row with no more than three total hours of sleep a day.

Resuming her outpatient VitalStim therapy (twice a day while inpatient) made her very happy!

August 20th: I tried everything to get her to play, to engage her... but she clearly was unimpressed!

THIS is what she really wanted to do!

Discharge Day!

Gracie was discharged on Saturday, August 21st, her 42nd day in the hospital since June 15th. She almost came home on that Friday, but because of some lab results, cardiology held her one more day. In all, she has nine follow-up appointments scheduled in the next two weeks. Five with docs due to the hospitalization and surgery and four others that she missed because of the multiple hospitalizations throughout the summer. You name a specialist and we are headed their way soon.

Reunited! Preston ran out to the car when Gracie and I pulled up! They were SO HAPPY to see each other!

It is, without a doubt, good to be home. It has not, however, been easy. Gracie's feeding regimen is intense. (But, I am happy to report that she doesn't retch and sob every time she is fed! She does, however, tend to be very sleepy while eating, regardless of the regimen.) She is weak. She is tired. And, it appears, once again, that she has a bug. I am trying to be positive... trying to put on a smile when people say, "She looks good," all the while knowing that she doesn't look good at all. She looks puffy - - in her feet and her face - - she looks fluid overloaded again. Her secretions are back with a vengeance and they are not the right color. She has been off of antibiotics (big, big guns... the "we have nothing else to try" level of antibiotics) for one week today - - just one week. The fact that, in the midst of her last course of antibiotics, she managed to spike a fever again for two more days stumped the Infectious Disease docs. I wonder what they are going to think of this latest development...

She is happy to be home, though so tired and so very puffy. There is a striking difference in her face just from Saturday morning (the 21st) to Monday afternoon (the 24th).

School starts Monday the 30th and regardless of her health, that situation has not been without drama either. I won't be going into the details here or on Facebook (for obvious "public forum" reasons), but suffice it to say that the issues are not small and were dumped on us without warning on August 17th, just 13 days before school was set to start.

I long for my girl to feel well, to not be exhausted by her favorite activities, to smile without effort. I long for the "simple" days of our organized chaos. I long for the lighter side of life to exist for more than five minutes. I long for that to show through here on our blog. We have been so touched by the care packages for our family, the gifts for both of the kids, the meals, the calls, emails, texts and posts, etc. We have been wrapped in love, support and prayer by so many wonderful people... some we've never even met... and those things are so appreciated. I can only imagine, without all of that, how awful I'd feel and how poor my outlook would be. I feel like I've been stuck in a rut of serious doldrums for a while, and though I know I have every reason to feel like that, I hate that I do.

So, as I nurse my sweet girl back to health, I am also going to make an effort to nurse my state of mind. To get my "glass half-full" attitude again, I will attempt to make September a blogging month. (Operative word here is attempt.) In between all of the hospital chaos, just prior to it and even during, there have been so many moments that are blog-worthy and I need to get them captured here. So, stop by more in September, maybe leave a comment and let me know you've been around! It will inspire me to actually follow-through and just might help fill my cup past that halfway mark!