Lately I have been working on getting Catherine hungry by reducing calories and hoping that she will begin to take more by mouth. What follows are some emails I sent to close family and friends before I remembered I have a blog I can post to!
January 8th ...I began reducing Catherine's calories on Monday (Jan.4). 10% everyday until yesterday for 50% total reduction. So far I've not seen any signs of hunger, but she has lost 1 lb. 6 oz. She also caught a cold yesterday so she is extremely congested(but seems to feel fine) and I don't think she would eat even if she wanted to. So, our plan is to wait a day or two for the cold to get a little better and reduce more until she shows some signs of hunger. We'll continue to monitor her weight and bring her for a check at the doctor on Thurs. She is having a baby
picnic with Daniel everyday and shows more interest each day. Today she looked
at a pretzel stick in her hand intently and played with some pretzel rings on
her fingers. She licked her fingers twice too. She seems more accepting of
food when it is presented to her at meal times.
Januray 11....please keep praying...
I decided today not to give her any nutrition through the tube, but I will give some Pedialyte tonight, and at lunch time she ate three goldfish crackers on her own (she put them in her mouth after I offered them to her on my hand)! this is a good sign! :-)))
January 12...I ended up giving her 4 oz. of pedialyte yesterday evening because she was pretty agitated, and then she perked up and ate another fish cracker. I gave her 12 oz. of Pedialyte over last night and this morning and she woke up happy, but doesn't want anything to do with food too much. She has lost 2 lbs. total and I think that is still ok. I will give her some (4 oz.) pedialyte at nap here soon and see if we have any progress this afternoon. If not, I will probably give her a tube feed tonight. She has an appointment in the morning to check weight. I am not sure what her pediatrician will say. I am hoping that he can give me a plan to sustain her for a few more days while still keeping her hungry yet not losing anymore weight and staying relatively hydrated. If not, I will ask him to write a letter for her application to the weaning program in VA., which is a 2 week intensive hunger based program.
Thanks for the prayers!
Later the same day...
What a rollercoaster ride this is...
Most of today she has been uninterested in food at all. She seemed to lack
energy but she seemed happy. I gave her pedialyte and half of a tube feed at
nap. A couple of hours later I gave her the rest of the tube feed and I gave
her pedialyte at supper. She didn't do too much during supper, puff cereal here
and there, just watched us eat. I was ready to stop the weaning effort and go
to Kluge. After I put the boys to bed, I noticed she was making chewing motions
with her mouth, so I asked her if she wanted to eat and she crawled to me so I
put her in the high chair. I put popcorn in front of her and I started eating
some too. She was just staring at me very hard. So, I offered her a piece and
she took it. She did that several times. Then I started eating Veggie Sticks
(this weaning stuff is hard work you know...) and I came close to her tray just
eating it, not offering, and she reached for it! So I gave it to her and she
put it in her mouth with no hesitation. She immediately spit it out. I kept
eating them in front of her and she kept reaching for them and I kept giving
them to her. She would play with it in her mouth sometimes, sometimes she would
take a small bite, but she would always spit it out. Seeing her interest I
started grabbing other types of food! I tried some greek yogurt on my finger
tip and she tasted it and also put it on a Veggie Stick and she tasted that
too. I tried the goldfish again but she spit those out. I gave her a chocolate
covered pretzel ring and she put that in her mouth until the chocolate melted
off and she spit the pretzel out. She was tasting everything I gave to her.
She hardly swallowed anything, but it was like she was trying to find something
she liked. It was amazing!
I do not know what we will do next. I hope that Dr. Anzalone can help me find a
good balance between sustaining her yet not satisfying her for a few days. I
think we are making some progress.
Thanks for the prayers, we continue to need them!
January 14...Thanks everyone for the words of support and prayers! Catherine's appointment with her doctor went better than I expected. He wasn't alarmed at her weight loss, but didn't want to see her lose too much more, so he came up with a maintenance amount of calories that will hopefully maintain her weight right now, but still keep her hungry. I'll give this over the pump right after she goes to bed so that hopefully she will be hungry during the day. I am so
thankful that he didn't want to give up and is willing to help us. We will
reevaluate this plan in 2 weeks when we see him again. She did well yesterday
tasting applesauce and tomato soup. She seemed to really like the tomato soup!
Please keep praying!
Later the same day...I will probably post updates on the blog from now on so that you can read at your leisure. Catherine didn't get anything by tube during the day today
(except pedialyte). She got her reduced calories of nutrition last night and she
tolerated it well. We ran around Lancaster and had lunch at a restaurant. I
brought some puff cereal for Daniel mostly, but also for Catherine, and I'm glad
I did! Jim placed the puff cereal on the table in front of her and she
immediately reached for it and ate it. She had probably 10+ pieces by just
grabbing them off the table and eating them. When I type it, it doesn't seem
like a big deal, but it really is! Normally she will not take food off the
table and eat it. Usually I will offer it to her and she'll grab it off my hand
and eat it and it's usually just a piece or two. But today it was different,
she just kept grabbing them off the table and eating them. I just see her being
more relaxed about eating and trying and tasting different food. Slow steady
progress!
Thanks for your prayers!
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