Oregon Trail
We had an appointment with the swallow specialist yesterday. I've been anticipating this for quite some time now knowing that Rambo doesn't swallow. I was interested in hearing what the doctor had to say about helping, treating, teaching, etc.
I gathered from the paperwork I received and phone conversations I had with a not-quite-competent receptionist that the doctor needed to watch him eat to see what the problem was. This makes sense. Bringing baby food (which he's never had) or rice puffs (which he's never had) did not make sense. So I brought his formula in his 'favorite bottle' at the receptionists insistance. I don't think it's necessary to remind anyone that he hasn't eaten from a bottle since he was about a week old (because he.couldn't.swallow) so I'm thinking he doesn't have a favorite bottle. Aaaannnnnnyway we find ourselves at the appointment. Mind you, I've worked his entire schedule out - thankfully it wasn't too far off - so that he would show up hungry, per the offices request, and want to eat. Needless to say he ended up getting his formula an hour late via his g-tube because the doctor wasn't going to watch him eat this time anyway. Way to know what the left hand is doing, right hand.
Silver lining: The doctor said she couldn't teach anyone how to swallow. Okay, WHY AM I HERE?? It seriously is laughable. It wasn't a 100% fruitless day though. We did come away with a few ideas on how to encourage swallowing and how to make eating enjoyable. Rambo gets to try different liquids to experience different flavors. We do this by dipping his fingers in a drink, for example. She couldn't say whether or not he'd actually be able to swallow one day because he is 'unidentified' genetically, but I do still have hope for him as far as eating goes. This whole unidentified business is proving to cause more problems..... It would be so nice to have a definite answer. And I don't mean definitely "we don't know." To know ONE thing, ANYthing about ANY of his issues would be awesome. Alas, that is not the path for us. The path of most resistance, least traveled, forging our way through is where we find ourselves. I keep waiting for somebody to die of dysentery.
But today as Theodore was looking up at me like he does ever so sweetly
I gathered from the paperwork I received and phone conversations I had with a not-quite-competent receptionist that the doctor needed to watch him eat to see what the problem was. This makes sense. Bringing baby food (which he's never had) or rice puffs (which he's never had) did not make sense. So I brought his formula in his 'favorite bottle' at the receptionists insistance. I don't think it's necessary to remind anyone that he hasn't eaten from a bottle since he was about a week old (because he.couldn't.swallow) so I'm thinking he doesn't have a favorite bottle. Aaaannnnnnyway we find ourselves at the appointment. Mind you, I've worked his entire schedule out - thankfully it wasn't too far off - so that he would show up hungry, per the offices request, and want to eat. Needless to say he ended up getting his formula an hour late via his g-tube because the doctor wasn't going to watch him eat this time anyway. Way to know what the left hand is doing, right hand.
Silver lining: The doctor said she couldn't teach anyone how to swallow. Okay, WHY AM I HERE?? It seriously is laughable. It wasn't a 100% fruitless day though. We did come away with a few ideas on how to encourage swallowing and how to make eating enjoyable. Rambo gets to try different liquids to experience different flavors. We do this by dipping his fingers in a drink, for example. She couldn't say whether or not he'd actually be able to swallow one day because he is 'unidentified' genetically, but I do still have hope for him as far as eating goes. This whole unidentified business is proving to cause more problems..... It would be so nice to have a definite answer. And I don't mean definitely "we don't know." To know ONE thing, ANYthing about ANY of his issues would be awesome. Alas, that is not the path for us. The path of most resistance, least traveled, forging our way through is where we find ourselves. I keep waiting for somebody to die of dysentery.
But today as Theodore was looking up at me like he does ever so sweetly
(See? I told you it was sweet.) I suddenly realized that he is a picture of Jesus that I would have never known had it not been for him. Difficult, tiresome, frustrating, lonely though it is at times, and it IS all those things, it is also fulfilling and truly something that not everyone gets to experience. He never fails to smile that goofy grin of his when he sees me. He's forgiving, always happy to see me even if I've been frustrated, always welcoming. And even as a baby he has taught me more lessons in love, trust and joy than anything before. I will take the cup I have been given. I will enter in order to possess. I will press on.
And I'll be sure to show you all the cute pictures along the way :)
some how this is the first time I am seeing this post... weird.
ReplyDeleteI'd like to say: I think of you whenever I hear this song.
Also, Please don't make me cry when I read your posts. I'm just sayin :)
Love you Amanda!