Alivia update and nearly-9-month stats

We had a checkup with Alivia's local cardiologist today. This was the second time we've met him, and it had been five weeks since our last visit. At that first visit, Alivia had been home for three weeks and we were working hard on her weight gain and settling into our new routine. She still showed signs of how ill she had been - her breathing wasn't completely easy or normal at times, and her kidneys were still slightly enlarged because of how sick her heart had been prior to her diagnosis, albeit not as big as the actual time of diagnosis.

Today, he was thrilled with how she looked. She's gained two pounds since last seeing him (making that three pounds total since being discharged the first of September!), her breathing is great, AND her kidneys are normal size! YAY!! In his words, she looked "100 percent" better than our last visit. The relief we felt was instant and big.

So, of course, he wanted to take a quick peek at her heart to check its function/perfusion. This always sets us up for likely disappointment. The day we hear her heart is working better will be a great day, and I know that day will come, but not surprisingly today was not that day. It's still looking about the same...but how could we not walk away elated still that she's doing so well? So all in all, it was a great day!

Our biggest concern is to keep Alivia healthy. Because she has fewer reserves to help her should she get sick, we are being very careful this winter to prevent illness. We wash hands a lot in our house, discourage visitors who feel ill, avoid crowded public settings when possible and are working on getting flu shots for all of us. Alivia also will get the RSV shot to prevent that particular respiratory virus.

I continue to obsess over her eating habits. She's increased her daily milk intake by about 5 ounces, and she's teaching us what solids she likes and doesn't. :-) She's finally - finally! - growing into 6-9 month clothes, which I'm thrilled about. Yay for more shopping!

Alivia isn't officially 9 months old until next week, but since we have her current stats, here you go...

Weight: 15 lbs 1 oz (3rd-5th percentile - finally out of the 1st percentile range!)

Height: 27 inches (close to 50th percentile or so - I had to look that one up on my own and I don't know how to read those charts very well yet)

I can't remember if I've blogged about her genetic testing results yet, but we learned a couple weeks ago that it's very likely this is not a genetic condition causing Alivia's cardiomyopathy, which is great news. (We also had Tyler checked just in case, and there's no indication of cardiomyopathy with him.) The cause of Alivia's condition still potentially could be a virus, which could give her a slightly better chance of gaining improved heart function, or it could just be something that happened. Many kids are born healthy like she was and later on develop the heart issue. It's likely we won't ever know what led to this.

The doctor says it's up to Alivia and her heart to determine if she'll be able to get off medication someday. We feel uplifted at how well she's responding to her medicine now, after being so sick such a short time ago. She is happy, smart and thriving - all with the help of a simple blood pressure medication and diuretic. God is certainly working in our lives, especially in hers. We have so much to praise Him for, we really do. Do things still feel scary sometimes? You bet - this has rocked us to the core, and it's still hard to believe it's happened. But we won't let the scary stuff overshadow all that there is to be happy about.