Well, if you read my last post on Jordan's swallow study, it sounded promising that she had lots of strong swallows before her aspiration. Over the past several days I have had to, again, face the reality of a child that cannot swallow. Jordan has become increasingly sick and I believe it is 100% due to the aspiration. Although, there is no way to prove that her awful sounding gunky cough is not a virus or bacterial infection caused by another sick kid, I just know the real reason that she sounds the way she does.
I have spent the past several months adamant that Jordan begin receiving feeding therapy and that we will NOT stop until she can eat. I want more than anything to provide my daughter the same opportunity 99% of the human population gets to experience. I want her to participate in the physical, emotional, and social experience that is eating. I want her to taste various tastes. I want her to feel various textures. I want her to sit with our family at dinner. I want to be able to go out to eat as a family. I want!
What I am trying to determine is if I am asking too much. Is it too much to assume that eating is the best thing for her? Is it wrong for me to put my own desires above her health? Is it really the right choice to put her into a feeding program when her little body might not be able to handle the consequences?
I have spent the past day reconsidering.
Reconsidering if feeding therapy is really the right choice.
Reconsidering if it is worth my daughter's well being to pursue something that I want for her.
Reconsidering if I have been chasing a dream that will never become a reality.
I know that I have to rely on God for my strength right now. I am trying not to give up, but I also need to stay grounded in reality. I will be calling her feeding therapist today and getting her opinion. I will be praying. I will by holding my sick baby and pouring out my love.
3 comments:
I think you need to follow your gut. This dream is a very reasonable, and valid, and meaningful one that you have for your daughter. I did a year of vision therapy with Stella (formerly tube fed--you visited our blog) when she was only two, and many thought I was crazy. It was so worth it. Sounds like you're willing to go to the moon and back for your daughter. This therapy can only help enrich her life. You are a wonderful mom, and I see the second-guessing as healthy and graceful because you aren't blindly pursuing something, but deep down I think you know exactly what you need to do! I really empathize with you. Hang in there and thanks for sharing your story. I know it will help others, and it's probably helpful and healing for you too!
hi kerry - i'm a friend of amber's, and my son was NPO for 14 months. he would get aspiration pneumonia from colds that he'd catch. i feel your frustration!!! in our case, he grew out of his severe silent aspiration. i will keep my fingers crossed for you that with time, things improve for jordan. for us, lung health was paramount given the damage that happened from undetected aspiration as an infant.
what helped me tremedously, though, was feeding my son our food, just blended and thinned with formula (later with whole milk) for giving via the g-tube. i felt like i was mothering him again, making him delicious and healthy meals, that he was "eating" with our family in his own way. and he *blossomed* on food the way you just can't on formula and it's limited, repetitive ingredients. i made him meals of yogurt and bananas and baby oatmeal. i made him rice and salmon and broccolli. he got color in his cheeks, his energy increased, and i felt amazing.
sending supportive thoughts your way! it's a hard journey, for sure.
p.s. if you're interested in the whole idea of feeding a child food in addition to (or instead of) formula, here's a link to a good friend's blog and book page:
http://completetubefeeding.net/?q=content/very-useful-links
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