Swallow study tomorrow--yay!
Hi all! Sorry for the lack of updates. It has been crazy just trying to keep up with everything now that Abby is in school and Katelyn is doing a little preschool with some ladies in our ward. It's all good for them, especially with all they have been through this year, but it makes for some crazy days for sure. We are just so glad to be home and to have this kind of crazy to deal with! It's great!
Hailey is doing pretty well. She had mostly gotten over the last cold and now she has another one. We have all been getting them and she seems to be no exception. I think it is to be expected considering that we have a kindergartener this year. That is why we are so glad that Hailey's heart has been fully repaired. Before her surgery she would have been in the hospital again for these colds, but now her oxygen saturations stay at about 97 with some help from 24/7 oxygen. I think she will be able to get off that again once she gets over this next cold. They will still have her on oxygen at night to help her little pulmonary vessels grow. Since we have been in Idaho 90% oxygen is about the best she can do on her own, which is way higher than she is used to but still not as high as they would like it to be. As her vessels grow and her heart continues to heal from surgery that should continue to get better.
Hailey will be having another swallow study tomorrow. I am praying she can pass this one because that would be the first step toward getting rid of the g-tube someday. Until she can pass a study the g-tube dependence will go on indefinitely. Lately she has been demanding food! She wants it so bad! She keeps trying to grab our plates and gives us a solemn stare if we eat in front of her. That is a miracle in and of itself since most kids who haven't gotten to eat orally early in life have major food aversions that can be very difficult to overcome. I am sure we will still have a fair amount of that to deal with, but a positive interest in food is a good first step. Her g-tube continues to leak enough that we both go through several outfits a day, which is not normal by the way, so I would be really excited to be done with it. We will have to go to Salt Lake to get that checked out at some point, but I am content to let it wait a little bit until we can get a little more settled.
One year ago we were prepping for Hailey's first heart surgery. I can hardly believe that a year has already passed and yet it seems that we have lived a few lifetimes in the last year. I hope that we are changing for the better as I believe that is what God intends by letting us go through difficult things. Our eyes have been opened in a major way to how much goodness there is in the world. You watch the news and think all the world has gone crazy, but you go through something like this and find willing friends and family and even strangers all around and you realize that the world is mostly full of good people and your hope grows. That is a lesson that I will treasure forever.
Anyway, I will try to let you all know how the swallow study goes!
Here is the last year in picture review:
Hailey is doing pretty well. She had mostly gotten over the last cold and now she has another one. We have all been getting them and she seems to be no exception. I think it is to be expected considering that we have a kindergartener this year. That is why we are so glad that Hailey's heart has been fully repaired. Before her surgery she would have been in the hospital again for these colds, but now her oxygen saturations stay at about 97 with some help from 24/7 oxygen. I think she will be able to get off that again once she gets over this next cold. They will still have her on oxygen at night to help her little pulmonary vessels grow. Since we have been in Idaho 90% oxygen is about the best she can do on her own, which is way higher than she is used to but still not as high as they would like it to be. As her vessels grow and her heart continues to heal from surgery that should continue to get better.
Hailey will be having another swallow study tomorrow. I am praying she can pass this one because that would be the first step toward getting rid of the g-tube someday. Until she can pass a study the g-tube dependence will go on indefinitely. Lately she has been demanding food! She wants it so bad! She keeps trying to grab our plates and gives us a solemn stare if we eat in front of her. That is a miracle in and of itself since most kids who haven't gotten to eat orally early in life have major food aversions that can be very difficult to overcome. I am sure we will still have a fair amount of that to deal with, but a positive interest in food is a good first step. Her g-tube continues to leak enough that we both go through several outfits a day, which is not normal by the way, so I would be really excited to be done with it. We will have to go to Salt Lake to get that checked out at some point, but I am content to let it wait a little bit until we can get a little more settled.
One year ago we were prepping for Hailey's first heart surgery. I can hardly believe that a year has already passed and yet it seems that we have lived a few lifetimes in the last year. I hope that we are changing for the better as I believe that is what God intends by letting us go through difficult things. Our eyes have been opened in a major way to how much goodness there is in the world. You watch the news and think all the world has gone crazy, but you go through something like this and find willing friends and family and even strangers all around and you realize that the world is mostly full of good people and your hope grows. That is a lesson that I will treasure forever.
Anyway, I will try to let you all know how the swallow study goes!
Here is the last year in picture review:
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