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Catherine Update

For the past few days I have been giving Catherine 3 bolus feeds during the day, and the rest over 2 hours on the pump right at bedtime. The reason we did this was because we thought that she might need to associate having a full feeling at the table when we're eating. But I didn't want to go back to the 5 feeds a day because she wasn't interested in food at all. She was having a lot of reflux and vomitting, in other words she was stuffed. Dr. A thought that maybe if we gave her all of her food after she goes to bed that it would increase her hunger during the day and she would want to eat more. Maybe it increased her hunger and that's why she was fussy, but she definitely wants to eat more since I have been giving her the tube feeds during the day. This doesn't make much sense on the surface, but perhaps there's something else going on.

The weaning program that we have applied to wants the kids to be on a blenderized diet and getting all their food from daytime boluses. They believe that it doesn't matter when a child gets their calories, day or night, they will not be hungry. Catherine was fed at night for a long time, and she never showed signs of hunger during the day. I have also heard some say that a blenderized diet is important in getting kids to eat more by mouth. Real food makes the tummy feel better. They "taste" whatever is in their stomachs even if they don't eat by mouth. They smell it. It prepares their stomach and digestive system for this transition.

So here's what's been going on this week...
Bad news first: Kluge has a waiting list until the beginning of 2012. Catherine got penciled into the last spot of this year, Dec. 5th. This just shows that MORE OF THESE TYPES OF PROGRAMS ARE BADLY NEEDED!!!! I don't want to wait until Dec. Especially after the progress Catherine has made just this week, I feel she will be ready way before then, if not even right now, as the Speech Therapist at Kluge feels Catherine is.

Good news: I have a Skype consultation with Dr. Markus Wilken this coming Wednesday. I am very excited about this. Dr. Wilken is a child developmental psychologist who trained in Graz, Austria where there is a 20 year old tube weaning program that boasts over a 90% success rate. He was the head of a very successful tube weaning program in Germany and now he is working on setting up home based tube weaning programs. I first found out about his work when I read about Jenny and Heath's story . It was amazing to read how Heath finally learned to eat! Dr. Wilken flew from Germany on his time off to help wean Heath and two other kids off their tubes. And he did. In three weeks, all 3 kids were well on their way to getting all of their calories by mouth. Long story short...he's on a forum I'm on and offered these (free!) consultations to parents. I hope that he can guide us as to what we should be doing for Catherine. Should we try another wean at home or is Catherine better off where she can be monitored very closely?

What Catherine has been doing this week:
Picked up and put a piece of banana in her mouth. This is huge because before she would make this icky face if she touched something soft or slimy like a banana and then she would throw it. She eventually spit it out.

She has been taking many tastes of her blenderized diet from the syringe! This is much healthier than all the other things I have been offering her. She will sometimes offer her pacifier so I can squirt a little on and she will taste it that way too. She likes my cooking!

She lets me offer her something on a spoon! She used to immediately turn her head or bat away a spoon if I approached her mouth with one. She has tasted oatmeal, yogurt, and sweet and sour sauce!

She loves popcorn! This is the one thing she will reach for and just keep eating and eating (lets it dissolve in her mouth). (I know it's a choking hazzard...I give her very small pieces without the hull and I watch her closely.)

She does all of this tasting and eating before, during, and after the tube feeds I give her. She doesn't act like she's uncomfortable with too much food. She has shown zero signs of reflux, despite getting a full meal fairly quickly, and NO VOMITTING!!! This is like a miracle to me. She would normally show reflux sign 3-4 times a meal and vomit as many times in a week. I am not sure if it's because she's getting the feeds less frequently or what, but I am so thankful for this. I don't want her to associate burning in her esophagus and vomitting with eating. She will never eat by mouth if that's all she knows!

Please keep praying for more progress like this and for wisdom for Jim and I that we make the best decision for Catherine. We continue to pray for all of you!


Patience said…
Praying for Catherine's continued improvement in eating. It must be a constant worry. (not to mention all the work preparing this stuff; I have a friend with a child with severe CP who does this)

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