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| Another scrapbook by Smilebox |
Above is a link to a Smilebox journal that I created as a thank you to everyone who supported Audrey over the past year. Before I get started, I just wanted to give everyone some directions for optimizing the Smilebox experience. First, pause the show right after you start it. This will allow you to scroll through the pages at your own pace; otherwise, the pages flip too quickly. Also, you can click on each picture to view it up-close. I apologize for some of the tiny font-it was a formatted layout for which I couldn't do much other than add pictures! I hope my photo selection illustrates the growth, both physical and emotional, over the past year. Enjoy!!
We have so many thank you's to convey to so many people for the encouragement they gave us, the gifts they shared, the prayers they lifted and the helping hands they extended. I cannot believe that a year has passed! Audrey simply is BLOOMING!
Her personality is incredible! She makes us so happy every day! Plus, she's funny! Quite the character! I guess I shouldn't be surprised to say that she is chattering and working on lots of sounds. She's not using any sounds/words consistently, but there are a few that she seems to use intentionally on occasion—suspiciously, she seems to be getting really good at saying "mom" and "up." She absolutely ADORES her boys--Daddy and brother--and she always has big smiles for grandmas and grandpas. Her nurse Kori holds a special place in all of our hearts and Audrey loves her Kori so very much. She has a splishy-splashy blast each night in the bath tub and more water ends up out of the tub than in the tub. Her red octopus bath toy used to be her favorite; now she likes her orange fish-fish the best…yet I suspect that froggie is vying for the top spot. Audrey is eating food...not much, but we continue to give her a little bit each day just to keep the sensation familiar. She has imposed a veggie-ban in her diet, much to my dismay. For those of you who know me, you know how hard that is for me! Actually, she will eat carrots as well as sweet potatoes mixed with applesauce...I guess that counts? I suppose it’s really a ban on anything green :-( Audrey likes her baby TV and she eagerly welcomes the white V-I-Z-I-O letters that don the TV screen upon powering-up. Her personalities and preferences have emerged with a force as great as you could imagine given her history. Her absolute favorite pastime is reading books—she loves books. We read a dozen books a day. It brings me such joy to see her intently look at each picture and each character and turn the pages by herself. She may be a bookworm someday, but I also wouldn’t be surprised if my little girl who spent her first months in near complete isolation ends up cherishing the beauty of the outdoors. She loves to sit outside. Most of the time, she only is able to sit near the open door, but when the temperature permits, we sometimes pull the length of her tubes all the way outside and soak up the sunshine. Words cannot describe the beauty in her lifting her sweet face toward the sun as she smiles and closes her eyes to enjoy the moment.
Her giggles are the BEST. Sometimes, she giggles for no apparent reason—it’s such a treat to guess what she must be thinking at the time. Most of the time her giggles are aimed at her brother—who is our resident expert in making Audrey happy. It doesn’t matter what he’s doing—he has reduced her to giggles by tossing a pumpkin in the air, springing “BOO!” from behind corners, and dancing, shaking and singing (simultaneously). Nothing he does makes sense. Nothing he does is prepared. But he genuinely loves to make her happy and her response to him always is heartwarming. She also is fascinated by bubbles—soapy bubbles and bubblegum bubbles. She becomes wiggly and giggly as she extends her little pointer finger to pop them!
I believe I have another “silky” baby…hers is pink and she already clings to her “silky” blanky waaaay more than brother ever did, which is saying something! (I should probably purchase a few back-ups?)
Audrey still requires oxygen and although we don’t have any objective measures of her lung tissue and lung function, her pulmonologist says that the best indication of progress is that she is growing and her oxygen saturation levels remain high. Also, she is slowly but slowly—and a bit surely—coming down on her oxygen levels. He said one of the worst mistakes that we can make is to wean her oxygen too quickly. As far as her prognosis—we still don’t really know what to expect. In fact, at our last visit, Dr. Woodward apologized for taking a while to come in to the room with us due to the fact that he’d taken time to show his two medical residents her lung scans. In his words, he wanted to give them the opportunity to view the scan because “as you well know by now, we just don’t get the chance to see something like that.”
Her greatest risk for her respiratory health is the flu season and RSV season that is in effect. We don’t take Audrey outside the house for anything more than a doctor’s appointment, and even then we try and limit those. James Gerald has accepted a routine of changing clothes as soon as he gets home. Washing hands is a must. Depending on where we’ve ventured in our day, sometimes coming in the door means going straight to the shower. He’s really good about it because he cares about his sister so much. It may sound extreme but the flu and RSV really are life-threatening to her. Her doctors agree that much of progress is due to progress as much as it’s due to a lack of regression due to illness. By the grace of God Audrey has stayed well!
She still has a feeding tube. I imagine that we’ll talk more decidedly about a g-tube (a tube that goes directly into her stomach through her side). I just don’t know how we’ll get away from it, I really don’t. But I think we are increasingly accepting of the idea. The nasal-gastric tube is just awful. Imagine having a spaghetti noodle down the back of your throat all of the time! She started condensed feedings during the day about a month ago; she still receives a continuous drip of feeds at night. She’s been doing “OK” with the change, but her tummy still has difficulty with the increased volumes. She spits up 1 or 2 or 3 times a day, which might mean that the doctor will suggest the fundoplication procedure in addition to the g-tube, which basically wraps the stomach around itself at the top in order to prevent reflux. She’s not drinking from a bottle. She really has lost the “sucking” behavior—not to mention that she’s been cleared only for “honey-thick” consistency, which would be quite difficult to suck through a tiny hole! Her solid foods are limited to about 8-10 different flavors, but even on a good day she doesn’t eat more than half a jar of baby food. We’ll see.
Audrey is sitting up by herself and she likes to stand up, too. She actually doesn’t need too much support. She can hold herself up with your fingers, or the side of the crib, but she does like standing up against the back of the couch and looking outside the best! She’s still not rolling over and although it may seem a moot point by now, she really does need to work on the reaching and rotating that is required in the move. She seems to be meeting all her developmental goals with time. Time seems to be the common theme for Audrey according to her doctors and therapists. It truly is encouraging to read updates and reports from the month prior—it seems like things that she wasn’t doing at the time are no longer deficits for her. She has shown us so much growth!
We have such a special bond with our little girl. She captures our hearts and amazes us with her resilience and strength. She continues to be a little miracle!
Thank you so much to everyone! I hope that you have enjoyed this long overdue update. I am happy to report that life seems to be achieving a state of normalcy. Not that our lives could ever truly be considered “normal,” but there is much more peace and routine! ;-) Our lives have been irrevocably changed and we are so very blessed to have so many wonderful people whose hearts have been touched by our little girl.
