Feeding Tube Awareness Week 2013
A week (or two months) late and a buck (or closer to two thousand) short.
I started this blog a while ago, like during the actual Feeding Tube Awareness Week (Valentines Day), and obviously time has yet again flown by.
To celebrate Feeding Tube Awareness week, and Heart Day- we visited our friends in Radiology and had a Swallow study! Probably our most traumatic yet. Not because it was painful or horrific, but because trying to get a toddler to do anything is like getting a cat to voluntarily bathe or a man to administer his own pain injection for a vasectomy....
Thank goodness for patient nurses, radiologists and therapists- also for the amazing technology that is BigBlock SingSong. After attempting to get him to sit on his own, I finally had to hold him while a nurse held my phone and a tech held a variety of rotating light toys and his cars while the therapist tried to get him to eat and drink the various varieties of food/liquids. I was somewhat opposed to the study to begin with and was only going to appease my husband. I knew that there wasn't much (if any) improvement on the swallowing front. Daddy seems to still see any reference of his son being different as a bad thing and an imposition to our lives, and thickening his liquids irritates him, so he wanted a study to see if we could stop anytime soon.
As I suspected, liquids are the same, and the unexpected and not as welcome news is that he is still holding solid food, particularly crumbly food like crackers at the top of his throat before swallowing which causes a choking hazard. This explains why he seems to have a constant cold and the therapist seemed slightly concerned at the lack of improvement with solids. So we got an "atta boy" and a referral back to speech therapy.
I keep telling myself to take the good along with the not as good, and while all the news isn't happy, I am thrilled at the progress we have made over the past year. Our first Christmas was filled with worry and doubts and all the doctors told me that he would have his tube in for at least a year if not more- so to only have therapy and watch what he eats and drinks is a small sacrifice in the grand scheme of things. He certainly isn't bothered by anything!
I started this blog a while ago, like during the actual Feeding Tube Awareness Week (Valentines Day), and obviously time has yet again flown by.
Thank goodness for patient nurses, radiologists and therapists- also for the amazing technology that is BigBlock SingSong. After attempting to get him to sit on his own, I finally had to hold him while a nurse held my phone and a tech held a variety of rotating light toys and his cars while the therapist tried to get him to eat and drink the various varieties of food/liquids. I was somewhat opposed to the study to begin with and was only going to appease my husband. I knew that there wasn't much (if any) improvement on the swallowing front. Daddy seems to still see any reference of his son being different as a bad thing and an imposition to our lives, and thickening his liquids irritates him, so he wanted a study to see if we could stop anytime soon.
As I suspected, liquids are the same, and the unexpected and not as welcome news is that he is still holding solid food, particularly crumbly food like crackers at the top of his throat before swallowing which causes a choking hazard. This explains why he seems to have a constant cold and the therapist seemed slightly concerned at the lack of improvement with solids. So we got an "atta boy" and a referral back to speech therapy.
I keep telling myself to take the good along with the not as good, and while all the news isn't happy, I am thrilled at the progress we have made over the past year. Our first Christmas was filled with worry and doubts and all the doctors told me that he would have his tube in for at least a year if not more- so to only have therapy and watch what he eats and drinks is a small sacrifice in the grand scheme of things. He certainly isn't bothered by anything!
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