Posted By Posting
Jul 10, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Michelle (Rory's Mom)
I watched the videos on your blog site.

The first thing they wanted us to do was get rid of our high charir that attached to a chair...they wanted him in a full backed self standing high chair. That way he was as confind as possible. That kept him from throwing his head back to get away from the food being presented. Also she may have self gagged on the tray becasue she had a piece of goldfish stuck. She may not understand (like a normal kid) that she could have used her fingers to fish in their and get it out.

With Jedd we were told that he had to move through the naturla stage progressions of food. So there fore we coudl NOT offer him things out of order.

So we had to get him to successfully take liquids first. Just liek a baby who drinks milk.

Then we had to do pureed foods. This is where we are stuck.

Next we go to foods that have texture of lumps in them. You know chunky foods like stage 3 baby foods. Or lump mash taters. We were here for a short time and he backslid.

Then, you move to foods that you can chew and swallow like crakers, goldfish, cookies...ect...

LAST you go to mixted textured foods like....a soup or a PB and J, or a.....taco....Something with ALL the textures in one food.

Just like a baby, a child who has a food aversion must go through each step before they will become succesful with the next step. Without thinking about it this is THE exact way infants learn to eat....they jsut don't think about it and neither do their parents.

This is called a food continum. I will try to find a link for it.

So by trying to do more than one texture at a meal time, it may be frustrating to her.

You may wnat to try and post these videos on P2P. There is a member there his name in real life is Dr. Sean Casey. His screen name is scasey. He works at Penn State. He job ourside of teaching is to teach children HOW to EAT....

If you google his name and Penn State together you will find him...LOL

He could give you tons of advise. In the past he was worked with some of THE LEADING therapist in the country...he is a wealth of information.

He only visits the Feeding Issues and Aversion Forum. not any of the others....

Hope t his helps and that you don't think I am overstepping my bounds..LOL (covering face and hiding..)
Jul 10, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Here's the thread on P2P that someone copied and pasted onto the site....I'll look for another.

http://www.parent-2-parent.com/forum/showthread.php?t=33331
Jul 10, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
http://www.talkingchild.com/chartfeeding.aspx

This is about tube feeds to oral feeds but it interesting....

http://www.new-vis.com/fym/papers/p-feed15.htm

Here is the above's main site. They are phenominal. She is areally good at getting tube fed children to oral feeds without "force feeding"

http://www.new-vis.com/p-map.htm

You will find some really good info on her/their website.
Jul 11, 2008
michelle&aurora
Aurora born March 17, 2007
3 years, 8 months old
Weighs 25.8 lbs
8 lbs 11 oz at birth.
Recovered Chronic Projectile Vomiter
Prevacid Free since September 08
Egg allergy diagnosed Jan 26/09
Has a Pectus Excavatum
Has an Epipen
Hi Jessica!

Thanks for coming to Rory's blog still. :) I always appreciate your input. I'm starting to wonder if we are really getting the best advice from her doctors. I just can't buy the "positive reinforcement" prescription right now. It seems so ineffective at this point. There are so many things I found interesting about your post, so now I'm gonna pick your brain some more. :)

The high chair issue was one I lost a long time ago. I wanted an upright, but we really didn't have the room, and since Mike was buying, it was his decision. Buying a new one is totally out of the question. Funny, we took the back off thinking it would give her more freedom....it sure did. lol.

I looked at the link for the food progression. It's really interesting. The docs mentioned nothing like this. They want her on table food smooth purees because of calories. I originally began with thin cereal, stage 1 baby food, and when she began refusing both, I automatically jumped to table foods. I kept trying everything and anything, and I believe this is where I truly went wrong. I didn't give her the chance to make that natural progression. Now we're at the point where she can eat one or two things from each category. Her repertoire of foods is so small, I couldn't possibly start over and pull foods she will eat, kwim?

My BIGGEST dilemma with starting over is that we have 2 months until daycare. I spoke with them yesterday and I am not allowed to bring her her own food, for a variety of policy reasons. Their menu, while fabulous, consists of things that she just will not eat at this point., veggie sticks, potato salad, green pepper salad, fruit salad, haddock and potato soup, chicken fries, that sort of thing. And they expect the babies to feed themselves and scrape their plates and drink from cups, blah blah blah.

The psychologist does not advocate self feeding at this point because he wants me to control what goes in and wants her on puree because of calories, yet they aren't concerned about her weight, so I'm extremely conflicted. He did say I could offer her other textures for chewing practice. The food continuum makes so much sense, but I'm just not sure if it is practical at this point. I will definitely be having this discussion with her docs though. See, we aren't seeing OT or ST, just the psychologist at this point, and so he is only focused on the behavioural aspect.

Which brings me to my next point. He adamently discourages distraction. No tv, just positive reinforcement. Well, not really working for us, kwim? So, today I took your advice and fed her in front of the tv, sitting at her side on the coffee table, and lo and behold, I could pee in my pants I'm so excited!!!!......she ate a whole egg yolk mashed with cream cheese and milk.....drumroll.....a tbsp of yogurt (hasn't eaten it in many months)....then, I gave her the bowl and spoon and she drank some more yogurt and fed herself one bite.....AND, she took TWO sips of formula from a straw and actually swallowed it!!!!! SOOOOO, distraction is now working. Before, she wasn't too interested in tv, but she's a bit older and it worked it worked it worked. BUT, wth do I do when she goes to daycare????? They certainly won't let her eat in front of the tv. I'm just not sure what is best in the long run. He SWEARS distraction isn't a long term fix, but lemme tell ya, after the last few months, if she'll eat like she did this morning because of tv, he's gonna have to be a LOT more convincing. LOL.

I'm also going to take your advice and stick to one texture per meal. That totally makes sense. So, could I potentially offer a different texture at say, snacktime, and leave the purees for lunch and dinner?

I'm somewhat hesitant to post on p-2-p, because the families over there truly struggle with issues so much worse than Rory. I would be interested to see what he has to say though. I just want a "focus", that's what I wanted from the clinic, and I suppose I got it, but I'm not convinced that it's just behavioural, so I don't have faith in the positive reinforcement so much. So much for leaving the world of GERD, lol.

I'll check your other links soon. Right now I have to get back to my monkey. Thank you so much Jessica for taking the time to help me out. I just feel so overwhelmed about the daycare thing, and all the conflicting information about how to get her eating well. I just want to do what's right, but everyone has their own ideas, my family, her ped, the clinic, y'all.....maybe the daycare can get her eating, cause I've certainly failed at it. lol. Thanks again Jessica. HUGE HUGS.

Jul 11, 2008
michelle&aurora
Aurora born March 17, 2007
3 years, 8 months old
Weighs 25.8 lbs
8 lbs 11 oz at birth.
Recovered Chronic Projectile Vomiter
Prevacid Free since September 08
Egg allergy diagnosed Jan 26/09
Has a Pectus Excavatum
Has an Epipen
how did it go with the two therapists Jessica? Did they come yet? I was wondering how you would make out and what conclusions you all would come to. :)
Jul 11, 2008
amber f
Sorry to butt in Michelle. Are you taking her to a daycare center or a private daycare? You need to keep into consideration that you are the employer to a daycare provider. I look at my families as the boss of me. If that makes sense. I follow their directions for their kids. I can understand why they don't let you bring food in but if there is a way to get her to eat they will have to go the extra mile. Meaning they should feed her from a spoon if it is the only way she will eat. If Rory came here and you had some methods you would like me to try I would try it. Because you are my paycheck. I would want to keep you happy. Not just that but they wouldn't want a child to starve at their daycare. It would be bad business. I hope they work with you and help you. Maybe Rory will eat well there because it is a change of pace. Who knows. Are you going to bring her one or two days in advance to get her used to it? Maybe bring her over meal time and see how things go. Maybe even soon so they can see how things really are for her at meal time. You could see if they will allow you bring her for 2 hours around lunch or something and you can have a little me time. I think it would totally set your mind at ease.
Jul 11, 2008
michelle&aurora
Aurora born March 17, 2007
3 years, 8 months old
Weighs 25.8 lbs
8 lbs 11 oz at birth.
Recovered Chronic Projectile Vomiter
Prevacid Free since September 08
Egg allergy diagnosed Jan 26/09
Has a Pectus Excavatum
Has an Epipen
Hey Amber!!

I'm so glad you posted on this. :) It's a public daycare. It's supposed to be the best in the area, particularly with their meals. The meals are made specifically for the daycare in one location, and distributed to all 5 centres. It's been in operation for 28 years, all the caretakers have ECC (early childhood education), they have strict routines, that sort of thing, and it's downtown, on a bus route, which I needed. They don't serve any sugar or preservatives, they use honey to sweeten, serve all whole grains, it's really good. I've been on the waiting list since January.

Because it's public though, we have less wiggle room with mealtime. They do not allow food to be brought in for 2 reasons: allergies, and the fact that it's a group setting, and would not be fair to the others if I was to bring, banana pudding, for an example. I understand their reasoning, I'm just hoping that when she gets there they might be willing to improvise. lol. The ratio is 1:6, so she said she might be able to have her teacher mash some of her food. I'll have to ask about sending her magic bullet, but again, it's extra attention that they may not be able to afford. I'm really hoping being with other children eating will work for her.

I like your idea about going during mealtime during the transition period. She will start fulltime right away, but the first two days, we can do half days to see how she adjusts. Any longer, and she said Rory will expect to leave halfway through the day, which isn't going to be the case. I am going down next week for a tour, so I think I'll go during mealtime or snack time to get a sense of what it will be like. I didn't want to make too much of a fuss or put forth too many expectations because I'm afraid they won't take her, and I HAVE to go back to work. I forgot to ask about food logs. I mean, she won't eat any worse than she does at home, soooo......I guess we just have to wait and see. Hopefully 2 months will make the difference for her developmentally.

I totally know what you mean about me being their boss, but unfortunately, there is such a shortage of good child care here, I have to abide by THEIR rules. I might have some more questions for you about daycare in the near future. I hope Nolan and the kiddies are doing well. Hugs.

Jul 11, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Jedd's therapist will be here at 12:00 so I only have a few mins. So I will get back later and post more...LOL I iddn't want you to think I forgot about you.

Glad the distraction worked. For us we do that and then as he gets more comfy eating we start trying to feed him "snacks" out in public...a natural prgression. Not alot of cals lost if he throws a fit and vomits on me so it's th elesser of 2 evils meal wise...

I get back to you on the daycare thing....
Jul 11, 2008
mom2halleyann
Donnessa, mom to Halley born 3/10/07
Reflux (mostly) resolved at 14 months
and Addison born 8/17/09. Currently exclusively bf and on 7.5mg Prevacid
Just wanted to jump in about the daycare thing. Although I understand their reasoning for not bringing in outside food, that menu is pretty advanced for kids the age of ours - Halley doesn't have aversions and won't eat most of what you had listed. That being said, I think you'll find that the other kids will probably provide the necessary distraction for her to eat. Seeing the other kids her own age eating may provide some positive reinforcement that seeing mommy and daddy eating just doesn't provide. She'll probably do better than you think. Good luck!
Jul 11, 2008
michelle&aurora
Aurora born March 17, 2007
3 years, 8 months old
Weighs 25.8 lbs
8 lbs 11 oz at birth.
Recovered Chronic Projectile Vomiter
Prevacid Free since September 08
Egg allergy diagnosed Jan 26/09
Has a Pectus Excavatum
Has an Epipen
Yeah, I thought the same thing about the menu, Donessa!! I'm glad to know it's not just Rory. :) I agree she should probably do better with other kids....I guess that would be a distraction, huh? So, do you think I should feed her in front of the tv if it works? I did it again for snack and lunch, and I kid you not....she ate blueberry baby food!!!!! FIRST BABY FOOD FRUIT EVER!!!! EVER!!!! hehehe....I think I know my answer. :)
Jul 11, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Personally I would feed her in front of the TV..JMHO though. I know the clinic here (spin off of Richmond's feeding clinic) tells us to do it and they even provide a TV and VCR for our appt. with them. I just bring the video tape and we are all set to go.

The TV can easily be illiminated later after she is eating more successfully. That is what we are currently doing with Jedd. With success I might add. He will now willingly for the most part take his yogurt sanck outside of the house with NO TV...:)~

I have learned with our clinic, it's a give and take. Soemtimes I do it there wya and if it fails they must bo okay with the fact that that technique won'[t work for us. they know I am VERY structured with Jedd's feeds so they are okay with it.

As far as the daycare..WARNING t his may get long...LOL

If Roray is seeing Early Interventin and she has an IFSP in place for her feeding therapy the daycare (becasue it's public) SHOULD follow it. The IFSP is a binding legal document that should be followed by daycare providers of the child. No if's and or but's about it....that the end of that discussion.

They can howefver tell you they don't service childrne's with IFSPs and tell you she must attned elsewhere. Personally, they really should not have much problem with this. Like Amber said, you are paying them, they should do the job.

I would also get a letter form the clinic you are seeing for Rory's eating issues and give it to them so that you can be allowed to bring food for her. You don't want her to starve all day long because she does NOT have the ability to eat what they provide.

I would really push down the point that physically and medically THIS is the WAY she MUST eat, no questions asked....

They need to understand that this is not you being picky. This is part of a medical issue that is trying to be resolved and should be willing to work with you.

I know some who have daycares that are willing to tube feed for their children so taking the time to do a proper feed for her should not be an issue.

If your currnet daycare won't do this the YMCA is VERY comfortable with dealing with children who have medical issues and should be more than wiling to take Rory.

It is the very reason that you are going to be facing that we jsut bit the bullet an dhad me stay home. No we dont' have enough of the green stuff at all. As a matter of fact we ahv emore cash out then in EVERY month...but, in the end I don't think Jedd would have ever eaten orally ahd we not done this.

YOu don't have to post on P2P obviously I only mentioned it becaue the other Mothers have been through this and worse...KWIM. They have been there done that and can tell you the tips and tricks they used that worked for them.

Just thought you could get a more broad help from them than form me...LOL

BTW I would REALLY get early intervention involoved fo r feeding. It will help you out tons. They can watch the feeds every week, monitor her progress and make adjustments and corrections right way to ensure proper useful techniques are being used.

Not that you're doing anything wrong, but I was in the past and they helped me to correct it and do it right. they are a wealth of almost FREE help.
Jul 11, 2008
mom2halleyann
Donnessa, mom to Halley born 3/10/07
Reflux (mostly) resolved at 14 months
and Addison born 8/17/09. Currently exclusively bf and on 7.5mg Prevacid
I say feed her WHEREVER she'll eat! When we used to have a lot of problems getting Halley to eat, we turned her high chair to face the TV and it really helped. I think the distraction helps. Good luck with the new daycare - I'm anxious to hear how it goes.
Jul 11, 2008
michelle&aurora
Aurora born March 17, 2007
3 years, 8 months old
Weighs 25.8 lbs
8 lbs 11 oz at birth.
Recovered Chronic Projectile Vomiter
Prevacid Free since September 08
Egg allergy diagnosed Jan 26/09
Has a Pectus Excavatum
Has an Epipen
Hey Jessica, I just wanted to let you know I'm going away for the weekend, but I'll post to you when I get back. I'm in Canada and didn't think we had Early Intervention, but I was on the community services website looking for information on feeding and daycares, and found out we do!!! I'll be inquiring on monday. I'm not sure she'd qualify as delayed, but it sure would be nice for an assessment at least. I'm a little peeved her pediatrician never mentioned this service. Oh well. Talk to you soon. Thanks again for your input. Hope everything went well today. HUGS
Check with your
doctor first!