Three Years Ago…
Three years ago our lives changed forever. In a little room in China we were handed one of our life’s biggest blessings. Instantly all the fears and worry of “if” and “how” we could handle such a uniquely, yet beautifully, complicated little wonder vanquished. In that moment, I think it is safe to say, we all felt an immediate connection nothing short of a miracle. We knew the Lord placed us exactly where we were meant to be. She knew she was ours and we were hers. Forever. Happy Forever Family Day, precious Susan Elizabeth!
Three years ago our lives changed forever…
So how about an update?!? It has been a long time and I apologize, I was just hesitant to share until we were sure about a few things. This fall and winter were a little rocky and Lizzie had some regression in the food, speech, and behavior areas. She had constant GI problems, lethargy, and bad respiratory infections, overall we were very concerned.
During this time were told to expect another open heart surgery within 6 months based on rising pressures in her heart. As each month ticked by my anxiety increased. But in February Lizzie’s cardiologist informed us the pressures that had him worried had not increased at all. We came back 2 months later and they were the same. It’s almost July now and she’s still on the 6-12 month time frame, how cool is that?! Lizzie’s heart was completely rebuilt a time or two, there are both donor and synthetic pieces (along with her original goods) keeping Lizzie going. We’ve always known future surgeries for replacement and repair are imminent. It’s really not a matter of if but when. Every day she’s able to hang on and keep on pumping with what she’s got is best.
In a little room in China we were handed one of our life’s biggest blessings.
She has not made much progress in the oral/feeding department. It’s the Lizzie 2 step forward 3 step back cha-cha. We got a gut punch from the insurance company after waiting months for the go ahead for an amazing in-home intensive feeding therapy (they told us it sounded great but to be patient, they just needed to work out a few kinks in billing). All her therapists and doctors (and momma) feel this is the best option for Lizzie, as the alternative is an 8 week INPATIENT program. Keep in mind the inpatient program costs over $40,000 more than the in-home. After assuming we were waiting on a simple start date they called to say “sorry, there’s no billing code for a couple of the components of the therapy so it’s a no. You can contact your congressman….” Livid. So we keep doing what we’re doing for now. I do not know why she won’t eat. I know it sounds like a simple fix, we’ve tried “making her hungry”. We’ve tried offering her this, that, and the other. We’ve tried making her eat. We’ve tried letting her take the lead. We’ve tried.
That aside, this spring has been an amazing period of growth and healing for Lizzie. She had ZERO infections requiring a physician’s treatment. ZERO. From February on she has not been to the pediatrician (except for a well check because it had been so long). She’s had a sniffle or two, a couple fevers, and cough but her little body was able to fight it all off on her own. Lizzie is still not saying much but the girl makes her wants and desires known. She’s great with sign and has also been given a communication device from the school. She’s stubborn and ornery and strong. She is also such a joy.
Her smile lights up the room, her kisses can melt anyone, and she loves fiercely.
She LOVES to swim. Still adores Mickey and the princesses. She enjoys books and movies, especially musicals. Music, her blanket, bubbles, balloons, and gloves make her happy. She is a playground pro now and climbs whatever is in front of her. She has no fear, which scares me to death. She is slowly learning the whole potty thing, which also scares me to death. Mostly she likes tearing toilet paper and throwing things in toilet. Oh! And guess what?! Lizzie is off ALL medication except for one tummy med. You read that right. No respiratory meds, no heart meds, no oxygen. What!?! After a couple over-night sleep studies the pulmonologist discontinued Lizzie’s ventilator. She is FREE FROM ALL RESPIRATORY ASSISTANCE. What!?! We do have to monitor her O2 saturation and have oxygen ordered to use as needed, so far she hasn’t needed! I am so proud of all she has conquered.