It has been a long time since we updated, partly because things have been busy... and partly because so many amazing things have happened with our sweet princess.
First, we celebrated her birthday. It was nothing short of amazing. A birthday out of the hospital after a birthday in the hospital... what a contrast. Every little smile she had radiated right into my soul. We took her to the Rainforest Cafe and she loved it. It's so bright and vivid with all the fun animals and plants to look at. Her favorite was definitely the tanks with the bright exotic fish... they have so many tanks! Afterward, we took her for a little birthday shopping and picked up a great outfit from Nana and a Duplo set with a Snow White figure from one of her great-grandpas. She loves that Snow White figure and likes to hold her, play with the fabric skirt, and just study Snow White. The drive home was uneventful, but watching her sleep after such an amazing day was bliss. Once we got home, we enjoyed the amazing cupcakes our friend Rachel made as Lily's birthday cake... orange cupcakes with orange frosting jam-packed full of love. Oh, it does not get better than that!
After celebrating her birthday, we prepared for her last trip to LLUCH for her ventilator tune up. I was surprised how much anxiety I had over admitting Lily when she wasn't in distress... we've never done it before. Every other hospitalization, she's been in respiratory distress beyond what we could manage at home. Easy choice. But with her history, choosing to admit her was rough. She was a champ though... even with a few bumps in the process, she rocked all of her studies and evaluations. Her heart function is great and her VSD patch is holding strong. Physical and occupational therapy say she's making leaps and bounds and are so happy to see so much progress since they've seen her inpatient last. Speech therapy was able to clear her via a barium swallow study to prove that she is not aspirating. Her therapist got a big kick out of the fact that in 35 years of work in the field, Lily is the first child who responded to barbeque sauce. She really likes strong flavors! Her overnight vent study showed that her CO2 levels were in the range of a normal healthy person for the first time in her life and no changes were made to her vent settings. The scope they did of her airway showed that she's in great condition, though a few of the muscles in that area are pretty weak. New information, but not surprising given everything else we know about her history.
Taking her home after just over 24 hours was surreal. We left expecting to move that weekend, but Joey's paperwork didn't arrive in time. As a result, we were able to have one more appointment in Loma Linda, this one with genetics. It was like closing the page on a chapter of our lives. Seeing our geneticist, the same doctor who had followed Lily from birth, was very good closure for me. Very healing. She'd seen Lily through some pretty big miracles and was really able to help celebrate our milestones with us. No matter that they weren't the milestones we expected when we had another little girl... they were our milestones and therefore worth celebrating.
Moving was a whirlwind, and even if I expressed my gratitude every moment of every day, I couldn't express how thankful I am for the tremendous amount of help we received from a lot of really good friends and a lot of brand new friends. Basically, if there was something we needed pre-move, during the move, or after the move (in either state), our friends made it happen. We feel pretty blessed to have made such great friends, even if we miss so many of them terribly.
Once we got to Utah, we started settling in. I say started because in nearly two months, we're not quite done. We did get our various appointments set up pretty quickly, so as a result, Lily has regularly scheduled visits with her pediatrician and almost all of her therapy visits (both rehab clinic and early intervention) set up. We go to her major clinic for her medical care later today. Definitely makes it feel like we're really living in Utah now.
After getting a little settled in, I've been taking the girls all over northern Utah. Just before Lorelei left to visit her grandparents for a few weeks, I had the opportunity to take them to the summer reading program hosted in our area. It was at a park and a lot of fun. Lorelei and Lily each got a free book to take home. Lorelei got to play on the slides while Lily watched Lorelei. They also had balloon animals... turns out Lily LOVES balloon animals. It shouldn't be a surprise since they weigh next to nothing and she can maneuver them so easily, but it was. Watching her was a lot of fun.
That same day, while Lily was watching Lorelei on the slides, I had a chance to talk to another mother briefly about my girls and their miracle journey. She remarked that I am one lucky mama to be enjoying this life that I lead. After pondering on the magnitude of that remark for over a month, applying it to all of the constant service it takes to be the mother of these two girls and all of the battles we have left to fight... I can honestly say that I am a lucky mama indeed.