Tuesday, November 23, 2010
Thursday, November 11, 2010
All Is Well
The past few months have been very busy for me. Working full time has really stretched my time thin and I have neglected Juliana's blog. In this case no news is good news. She is still struggling with her weight but we have not seen any significant losses. We have made some changes to help her pack on those pounds which seem to be working. She has changed to a new formula that is one and a half times the amount of calories that she was receiving before. She is adjusting to it well with a few adjustments.
She is moving right along developmentally. She is babbling and carrying on conversations more often (baby conversations of course). She is follows directions well (for now at least) and you can really tell that she understands what is being said to her. About a month ago she received orthotics for her shoes to help her foot position. Within a couple of weeks she started walking across the room on her own. She now spends most of her days upright and walking everywhere. She is not professional just yet but is certainly thrilled with herself as she turns around in a complete circle without losing balance.
At our last clinic visit we actually discussed setting a date for surgery as her oxygen requirement is extremely low right now and she is even able to tolerate up to an hour completely off oxygen. Her sats off the oxygen are not fabulous but not low enough to set off the alarm on her monitor. We are hoping to get surgery done early next year so that she has enough time to recover and deal with any issues. We are excitedly anticipating her role as flower girl in my brothers wedding next year. I am sooooo excited for my brother and his new fiance.
We have made some very small but big steps in the world of feeding and mouth play. Juliana will drink from a sippy cup! Of course it's only on her time but at any rate it's an improvement. She will only drink water as of yet but we keep trying. She loves to chew on washcloths and is tolerating her toothbrush with toothpaste. Toothpaste is the only thing with flavor that she will allow in her mouth so far.
We have a couple of new therapists this month and Juliana seems to be adjusting to them well. She actually tolerated playing with play doh and wasn't as aggressive in fighting back during mouth play. We loved our old therapists but we all felt that after a year of the same faces that maybe it was time to try something new with a fresh pair of eyes.
I will post some new pictures within the next week. She has grown so much over the last few months and not just in size. She is maturing right before my eyes. It's all so hard to believe how far she's come, but I have seen it with my own eyes and she is truly a blessing.
She is moving right along developmentally. She is babbling and carrying on conversations more often (baby conversations of course). She is follows directions well (for now at least) and you can really tell that she understands what is being said to her. About a month ago she received orthotics for her shoes to help her foot position. Within a couple of weeks she started walking across the room on her own. She now spends most of her days upright and walking everywhere. She is not professional just yet but is certainly thrilled with herself as she turns around in a complete circle without losing balance.
At our last clinic visit we actually discussed setting a date for surgery as her oxygen requirement is extremely low right now and she is even able to tolerate up to an hour completely off oxygen. Her sats off the oxygen are not fabulous but not low enough to set off the alarm on her monitor. We are hoping to get surgery done early next year so that she has enough time to recover and deal with any issues. We are excitedly anticipating her role as flower girl in my brothers wedding next year. I am sooooo excited for my brother and his new fiance.
We have made some very small but big steps in the world of feeding and mouth play. Juliana will drink from a sippy cup! Of course it's only on her time but at any rate it's an improvement. She will only drink water as of yet but we keep trying. She loves to chew on washcloths and is tolerating her toothbrush with toothpaste. Toothpaste is the only thing with flavor that she will allow in her mouth so far.
We have a couple of new therapists this month and Juliana seems to be adjusting to them well. She actually tolerated playing with play doh and wasn't as aggressive in fighting back during mouth play. We loved our old therapists but we all felt that after a year of the same faces that maybe it was time to try something new with a fresh pair of eyes.
I will post some new pictures within the next week. She has grown so much over the last few months and not just in size. She is maturing right before my eyes. It's all so hard to believe how far she's come, but I have seen it with my own eyes and she is truly a blessing.
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