"Not flesh of my flesh, Nor bone of my bone, But still miraculously my own. Never forget for a single minute,
You didn't grow under my heart - but in it"

Wednesday, October 5, 2011

Swallow Study

Today I got up at the break of dawn and got Noah in the car to head to Dallas. Honestly I hate driving to Dallas. Its better doctors so that is why I go but really really hate the drive. Today it took...hmm...90 minutes I would say. Traffic is always horrible and then there is construction which throws off my gps so its a whole boat load of fun. :)


We get there and hurry up and wait. Story of everyones lives huh, just hurry up to do everything we do just to wait. Anyways, I put a mask on Noah. I do not need him catching something and being in the hospital. When we registered he was coughing. The lady registering him looks at me and says "How long has he had that!" I said since birth! He has a cough its his thing he isnt sick. People assume. I hate that. I hate when people turn away when he coughs thinking he is sick, I hate when people look at me like I am horrible and starving him to death because I dont order him food. People dont assume! Ask! And ask nicely not in a judging way. You dont know all the details.

Then we got moved from one waiting area to another there was a little boy there. I heard his mom talking to the dr about his gtube. That opened up conversation for us. He was 11 and there with his twin brother. The boy was in a wheelchair and not mobile. Pretty much non verbal too. I hate to say that though because I heard him "speak". You could tell what he wanted and what mood he was in. Noah went right over to him tried to move his wheelchair outta the way so he could play. I told him not too but the boys mom said Noah was fine. The boy loved watching Noah and Noah was laughing at what the boy and his brother were doing. Then the boy reaches over and takes off Noahs mask. LOL. He didnt look like he could control his movements enough to do that. His mom hollered at him but I told her it was fine. Noah was very appreciative of the kid taking his mask off bc he hated it on. I loved watching them play together. Noah inspected every part of the wheel chair, he was so curious. I am hoping my children will be very tolerant of other people especially ones with special needs. Right now it is all they know really.

So we get back there and get suited up. There are about 6 of us or so. Noah is the center of attention. The one specialist gets the food and begins to feed him. Yeah right! Noah looks at her like, "Woman you arent getting anywhere near me with that!" I laughed out loud at his expression. She gave it 2 mins or less and said "Mom you do it!" Then I began to try. He was a tough sell but I managed to get a couple bites in there. It was bite 42 pictures lots of chatting back and forth, make him look here, wild noises trying to get him to look, hold his hand down, more crazy noises, lots of people talking, next bite 42 pictures and it all starts again. I tried to bring calm to the storm and started singing itsy bitsy while I was feeding him. Seemed to work great for getting him to look, not so much for getting him to eat.

What we learned was his anatomy was better today than last study. So what does that mean. Everything works so no answers as to why he wont allow it to work.

Great. Really I am ok with it. He will eat when God wants him to and until then we will just deal with this.

Be blessed

5 comments:

  1. I do not know if a cough is part of have Trisomy 8 (or is 18 I cannot remember) if it is not has anyone checked him for asthma? If it is asthma that might be why he is not eating. When my asthma is flared the last thing I want to do is eat. (It is just a thought.) He is so blessed to be a part of your family.

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  2. Thank you so much!!! Yes see I think that too either allergies or asthma. His birthmom and her family have asthma related allergies. When his secretions are low or not there he will eat but when he has a lot of secretions and that cough then he wont!!! TYSM. I will definitely be calling the doctor on this. Be blessed

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  3. You're welcome. I will be praying.

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  4. Because of the secretions and all of this he was just dropped from feeding/st therapy. Grrr.

    Thanks for the prayers.

    Be blessed

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  5. Has he had esophageal motility done? That will tell you SO much more than a swallow study. There are only 4 places in the country that Mayo recommends sending kids (because Mayo won't do it on kids!) One of them is Boston Children's which is where we brought Angela. It's a fascinating test, but can analyze the special swallowing mechanism (that's the name of it). What we found with Angela is that her muscles all misfire at the wrong times, and it changes depending upon the texture and consistency of what she's eating (liquid verses solid, crunch verses soft, etc.) That kind of information you cannot see on a swallow study.

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