Hi All! I am asking for prayers for our oldest daughter Abby, who is
9 years old. Most of you know that Abby is autistic. She is
nonverbal, and communicates mostly with gestures and pointing. She is
a very sweet, smart, and gentle girl. Abby has always had feeding
issues, she has never in her life chewed any solid foods. I have
pureed her food ever since we FINALLY got off baby food only a couple
of years ago. If I do not puree the food completely (meaning no
chunks at all) she gags and vomits. She also refuses to drink, and
fortunately she gets tons of liquids in her pureed foods and is never
dehydrated. In the last 4 or 5 months she has progressively stopped
eating her usual foods, and has been down to eating only pureed mashed
potatoes and green beans. She literally would eat about 8 bowls of
this a day, and that was it. But about two months ago, she got a
stomach virus and since that time has really not been the same. She
has had days where she would not eat a bite, and has had chronic
diarrhea. She is now down to 43 lbs, and we are needing to do
something. We have always kind of "walked the line" of needing a
feeding tube for Abby, but she would usually eat such a good variety
of foods and was growing, albeit slowly. She has dropped 10 lbs in
the last 6 months, and is not healthy. We saw a pediatric
gastroenterologist today at University of Michigan. Abby has tested
negative for any parasites, she does not have Celiac disease, she has
very healthy blood counts (which is so hard to believe based on her
restricted diet!) but she persistently has pain and diarrhea,
terrible gas and weight loss. The doctor prescribed an antibiotic to
address any bacterial overgrowth that may be in her intestine, and we
are praying that will help the diarrhea. The gas is likely caused by
her pathological aerophagia, which is her compulsive air swallowing.
Abby will wake up with a flat stomach, but she immediately begins
compulsively gulping air (it sounds like she is holding her breath and
swallowing, then she lets out a big "taaaaaaaaa" and breathes out the
air). Her stomach will blow up like a balloon and is hard as a rock.
I mean her stomach gets HUGE.....which of course causes excessive
belching and gas and pain, and aggravates the feeding issue because
her brain thinks she is full when her stomach is so stretched. The
doctor feels we need to consult with a surgeon about a feeding tube
for Abby. For one thing, she will get adequate nutrition, and we can
also let out all the air from her belly through the button on her
belly, alleviating that discomfort. I agree that this is what we
should do, but it's a very hard step and I am not looking forward to
it. Please say a prayer for Abby and for us as we learn about this
feeding tube stuff.....yet another club I get to join (kind of like
joining a sorority you didn't pledge for, lol) I know I will be able
to handle it...I've handled her seizures, I've handled her gagging on
food and pureeing mashed potatoes for what seems like 150 times a
day....but right at the moment it feels like a very scary thing. I am
NOT a good medical person, I get easily grossed out, but I will do
anything to help Abby get better....she is now officially "failure to
thrive" and that is one diagnosis that can evoke some major mommy
guilt! Thanks for your prayers!
