I have logged on twice since Tuesday but seriously, after a clinic appointment there is so much information flooding my brain that I shelved it all. And then there was Thanksgiving, and my brother and his wife and little girl visiting and then life and then next thing I know I am getting calls and emails wondering about Piper and her possible NG tube.
Sooo...as of right now its a no. Praise God. Sort of. Piper finally gained a third of a lb. Is that good? Well, her primary oncologist Dr. Bergsagel was into see us and he feels like as long as she is not losing weight, she will be fine as long as we continue doing what we are doing. Apparently it often takes 2-3 months on Maintenance before children begin feeling better. So hopefully food therapy will begin and be helpful and Piper will begin to trend upwards with her weight. While I am thrilled to avoid an NG tube I am seriously over the whole syringing formula into her little body. And that formula is EXPENSIVE. But, she definitely has more energy and is happier getting all those calories. So onward and upward we go.
yay for no tube!! still praying.
ReplyDeleteStill praying and know that you are extremely tired!!! Was wondering though why you cannot just go ahead and let her stay on the bottle through the formula time? Since she will be going through therapy anyway would it be that bad? Love you!!
ReplyDeleteAngela, I forget sometimes to clarify that when I say Piper wont "eat" what I mean is that she refuses to eat OR drink anything worthwhile. I offer her a sippy cup each time she needs to get milk in her and every time she refuses so we go on with the syringe. (she has no interest in a bottle) And she signs "eat" all day long only to nibble on ritz crackers, cheddar cheese and sunflower seeds...the current favorite foods.
ReplyDeleteOur hope is that she will begin to consume solid foods well enough in the near future to eliminate the need for mega formula. Until then we are doing what it takes for her to simply survive.
Gotcha, I thought the bottle had come away just because she was just that age. I didn't realize that she didn't want that either. Her snacking sounds pretty good to me, but apparently that is not enough to make her gain weight.
ReplyDeleteRead your crying on Tuesday blog and girl I have been doing a lot of that lately but I am in no way in your shoes. You cry all you want. I don't think in any way those ladies in your small group would criticize that you were led there by God. Glad you guys are going through counseling and hope that it is doing well for you.
Love you muches and think of you often.
Okay, I'm totally behind because I haven't figured out how to subscribe to your blog.
ReplyDeleteAnywho...if you have a home health service, you may be able to get them to deliver your formula and insurance will cover it.
After 12 months, we got all Abigail's formula for free from insurance since she was over a year old and needed it to live.
And...since I'm reading backwards...I miss you and the picture of your kids sleeping is priceless. I love that piper wears a hat...where did that come from? Does she do it in the summer too?