Zoe has been running a fever again since Saturday. Just a low grade one. So we are just waiting to see how she does. She did great eating and drinking Saturday but not so great the last two days. And so we are waiting to see how that goes too.
The feeding study is tomorrow and we are feeling a bit anxious about it. Since birth we have gotten pressured to put Zoe on a permanent feeding tube (G-tube). Some of the kids need this. But we have never felt that Zoe did/does. So it feels like this constant argument. We have agreed to the feeding study since she has had so many lung issues and we need to be sure she is not aspirating on her feeds. If anything, we think she is aspirating on reflux and this test won't tell us that anyway. And a g-tube won't stop her from aspirating on reflux. We know at least two 1P36 kids who have g-tubes and still have major lung issues.
Zoe is currently laughing like a maniac (she is supposed to be sleeping). So I am going to go eat my dessert and listen to my daughter laugh. She was determined to tell me something during dinner and it took us 15 minutes to figure out the exciting news was "Grandad gave me some milk today." She also wanted to swing on the swing outside after dinner with grandad. How could we say no when it took us so long to figure out her request? And so she got her swing in before bed.
Epilogue
4 years ago
2 comments:
Good luck with the feeding test! We'll be thinking of you guys! Sending thoughts, prayers and hugs!
Hope all goes well with the feeding study. It is always difficult to make the decision about a feeding tube. When Kylee was a good eater just wasn't gaining weight I fought every Dr that suggested a feeding tube. I said she is eating and that is the big part. Then the day came where she lost all skills from the ACTH shot and that choice was made for us. So with that being said stick to what you feel is best for you child. You are great parents and I think of you often. I always talk about Kylee's friend Zoe. I'm so proud of how far she has come this year.
Karen (Kylee's Mom)
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