Very Picky Toddler...

I have some experience with children with cleft palates being a birth doula. I'd suggest limiting the Pediasure. I believe it has tons of sugar and maybe even high fructose corn syrup. I'd have to look at my nutrition notes about your situation before giving you specifics.
As far as speech therapy, please consider coming down to Johns Hopkins. They have amazing staff who are great at language.
And lastly, and equally as important, I'd encourage you to look into cue speech rather than sign language. Takes 2 weekends to learn, literacy is so much better than with children who sign. If you want any more info. about any of my suggestions, please contact me.
Trust your gut!

Will he eat pureed stuff? My son is 2 and although he eats regular table food one of his favorites (and the easiest thing) is pumpkin out of the can. (Just make sure that you buy pure pumpkin and not pie mix ) Usually I add some cinnamon and sometimes unsweetened applesauce. My son eats it cold right out of the fridge! But of course, you could warm it. I know it sounds wierd...but it's a veggie.Otherwise plain yogurt with any fruit in it? You could puree some fruit and add it to plain yogurt. (Has less sugar than the pre-mixed kind)
Also what about eggs? That is an easy fix and should be easy to swallow?
The other thing I do is make really healthy muffins...thought that might be soft enough for your son - I use bran cereal as the base and then add banana and blueberries or carrots - I freeze them and then thaw one at a time in the microwave. Easy way to get a whole grain, a fruit and possibly a veggie if you did carrot/pumpin or something.
Good luck, these are what I can think of right now that might be worth a try!

I don't have any experience in this area but I just want to say that you should not let people give you the "that boy is being neglected by those young parents" stink eye! By your post and the list of specialists/therapists you are working with, it's pretty clear you are doing all that you can for your son. I know kids with far less pervasive medical conditions and far older parents whose conditions are ignored b/c the parents can't own up to something being "wrong" with their child. Good for you for being his advocate and I hope someone can offer you some much needed feeding advice.

I should think that your son should have been refered to a speech therapist and an Occupational therapist who would work with him, and you, on feeding issues, along with the speech issues that are bound to be part of this kind of birth defect. Please ask your pediatrician both these questions on Tuesday morning, and get appointments as soon as you can.

While you may want to know right now, it can wait a couple of days, uless he is in some kind of imedeate distress, in which case, call the on call doctor. If you feel like your are not being respected by your pediatrician, find a new one (right after you get your referal, and the answer to your nutrition question.)

M.

What about follow up formula? It is made for kids 9-24 months so it should be appropriate for your son and it is available in the supermarket. I wouldn't sweat the bottle comments, your child obviously has special feeding needs. My kids kept their bottles past 18 months and they had no major health issues. My 2 year old now is getting molars in and doesn't want to chew much. She likes the baby "puffs" and things like that that almost dissolve in her mouth.

Do you have a case manager or someone who can help you coordinate services? Also maybe there is a support group for for cleft lip and palate online or through a children's hospital near you. It might be a good way to meet other parents who have experience with these issues.

It is always annoying when doctors (or anyone else) talks down to you. It happened to me on occasion too and I was not a young mom when I had my kids. I found what helped me was learning the medical terms that applied and asking educated questions (even just asking for clarification if someone is throwing a lot of medical terms at you can help). Being able to explain what you observe on a day to day basis helps too. Both my babies spent some time in the NICU and had some specialist follow ups. I wrote my questions and observations in a notebook and brought it with me. At the end of the appointment I skimmed my list to make sure I asked everything. I also jotted down important info about medications or tips to help at home. I found that sometimes a nurse or nurse practitioner may have more time to talk to you or answer questions than a doctor. I hope all goes well for your son and you.

I am shocked that anyone in the medical community would be so callous and lacking in compassion for you and your baby. It sounds like you may need a different team. Perhaps Children's hospital in Pittsburgh, Washington, DC or Ohio would be a better choice-the whole family needs to be treated with decency and kindness-it will effect the outcome and expedite the progress. I find it hard to believe that we as a nation can put a man on the moon and not come up with a device that will seal the hole in the roof of a baby's mouth so that they can eat without the food going into the nasal passages! If this happened to grown men-this would not be a problem. Have you said to the doctors that you feel as though they are mistreating you? You should.You are your child's only advocate-he cannot speak for himself-I'm not suggesting you are negligent in any way-but use a little muscle on his behalf and don't let anybody push you around. You may also consider Shriner's Hospital-they are amazing and free-I know someone who took their daughter to them yrs ago-they are wonderful! Here is the link-God Bless You and good luck. Considered yourself hugged!

http://www.shrinershq.org/sitecore/content/Hospitals/Hous...

:( a lot on ur plate w/this one...
I think the toddler formuls is ur best bet. At least untill u can ask his doc what to give him...
don't be intiminated by the doc they are just people too (that is what a friend reminded me of when i was upset w/my doc...that and "see that sign that says practicing? that means they are practicing--they don't know everything and the things they do know they might learn a lot more about it as time goes on")
Good Luck :)