Tuesday, April 4, 2017
Tough choices
Huge improvement today and another testament to the power of prayer. Adelina took, from a bottle, 10 cc's of milk. That is about 2 teaspoons. Prior to this amazingness we have only managed 2 cc's. We need to decide if we can get her off the tube quickly or if it would be in her best interest to get a G-tube which is placed directly into her stomach with a "button" above her belly button for feeds. She has three speech therapists that work on feeds and they are all very different. One thinks that she will learn to eat around age 4-5, she is in no hurry to get her eating by mouth, pretty discouraging. One feels that we need to get her hungry and she'll eat (this is what happened today). The third had a tube fed child until the age of eight and recommends not waiting for a G-tube.
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We too are trying to decide if we want a G tube as well! I am starting to lean towards the tube because I am so done with tapped faces haha
ReplyDeleteWhen Calvin was talking bottles the hungry method worked wonders for him. I would try to feed him some milk here and there to get him practicing and he would never take it. Finally we started making him hungry by stopping feeds for 3 hours and then he would chow down!
But I am no speech therapist and everyone's situation is different.
I love reading your posts on how addy is doing! I am so glad she is doing well!
-Stephanie
How's Calvin doing? Why isn't he taking bottles anymore? We have three speech therapists and they have very different experiences and techniques, it's a little crazy. Oh what I would give for her to chow down, lol :)
ReplyDeleteTurns out his is still aspirating a little so we are back to a NJ tube. We are hoping for a G tube soon because I think it might be a while till he has the muscle strength and corrdination for swallowing. He is doing well! We have him on seizure medication and he is making lots of improvements! He has some congenital brain abnormalities that may cause him some delays, but we don't know how sever. We are very hopeful though because we have already see a crazy amount of improvement since the seizure medication started :)
ReplyDeleteI just saw your comment. It sounds like you've had a crazy journey. I have been asking about the G-tube because I think the Ng or Nj is a poor long-term solution. Last time she had the Nj placed they wanted to put something in her nose to cause pain if she pulled it but over and over I'VE been the reason it's been pulled :( A friend of ours just got it and feels like it was a great alternative. When does he go back to PCH?
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