June 15, 2016

Cleft questions

So clefting is a huge umbrella hosting a pile of various cleft combinations and concerns.  This post is geared towards the specific procedure Bauer had.  Some kids won't have to have it.  Some kids will have to have a larger portion implanted.  I have many friends that are literally having this procedure done between tomorrow and the next 6 months.  Just wanted to answer a few questions and may relieve a little stress at the same time.

I felt way less prepared concerning food on this procedure vs. any of the others.
Here are a few things that might help.
1.  PRACTICE with syringes before your surgery date.  It doesn't have to be a long term thing.  We practiced with gently pureed potato soup and one other item I can't recall.   I think it helped Bauer mentally knowing what to expect.
2.  remember their jaws are not wired shut for this one.  So the fact that they can move their jaws gives them 1000s of more options with food.  Bauer uses his tongue to smash the food against his palate.   YOU NEED TO TRY IT so you can idenify with and help them figure out what to do.
3.  I started to quickly understand that pure liquid wasn't going to have to last long as long as he could use his tongue without using his teeth.
4.  THEY CANNOT CHEW.  If you break an arm its in a cast for 6 weeks because the bone has to heal.  Their mouths are in cast-mode for 6 weeks.  You don't want to chance them eating something that would tempt the chewing process.   Our brains naturally want to chew but we have to help them think every time they put food in their mouths.  I can't explain to you how often I say, "No teeth.  Just tongue."
5.  Stick with jello, yogurt, and applesauce packets if they aren't comfortable.  Let them eat whatever they will eat!!
Catch?  It has to be blended.  Example, we had hamburgers at a restaurant.  I took our blender with us and blended them with ketchup.  It wasn't soup but MUCH smaller, softer portions.
7.  If you're not sure it can be eaten...PRACTICE IT FIRST ON YOURSELF.
8.  We have a blender, food processor, and magic bullet.  I take the bullet with me in case we need it while out.  We've used it several times in the restaurant.
9.  BREADS ARE NOT THE BEST.  I would not advise using breads.  We've let him have tiny bits of bread but it just doesn't dissolve.  That leaves him eating chunks of bread that sit on his stomach.  Again, try and see for yourself.  French toast is on the list but I think it would have to be REALLY soft.
10.  I would advise to only use paper cups and plastic spoons.
11.  Let them eat whatever they will.  I've noticed Bauer getting irritable and I wonder if low sugar was because of it.  Let them eat.  They aren't on a diet.
12.  If you even THINK they are using their teeth GO BACK TO MORE PUREEING.  Not worth chancing it.

If we fed - we either used the syringe or dumped into mouth with a spoon.  If the food was thick enough we would also set the food upside down on his tongue as he stuck his tongue out
If he fed himself - we tried to get him to turn the spoon over before eating to avoid suture hit.  They can self-syringe but its tricky.
1.  Jello
2. Pudding
3. Yogurt
4.  Eggs  - scrambled, broken up into tiny pieces - NO TEETH!
5.  Ziti Meatballs - Blended to think consistency - smash on palate
6.  Hamburger - early on it was liquid goo but moved into blended tiny pieces
7.  Chicken and yellow rice - goo early - rice can be tricky.  You don't want it getting stuck in suture lines.  Milk, mashed potatos, broth helps
8.  Mashed Potatoes
9.  Even tried Pulled Pork - not my fav idea but we chopped it super fine.  It was soaked in sauce and tore apart easily with the tongue
(I do not advise big hunks of meat early on - blend blend blend)
10.  Mac and cheese - overcook the pasta
11.  peas - steamed - smashed well
12.  soups - I used potato soup and added a can of black eyed peas - cooked it - blended slightly and would sit on the spoon easily
13. Cereal pureed with milk - basically like a milk shake - nothing with nuts or seeds
14.  Ice cream! :)

ALSO - toss out the idea of straws - they are not allowed to suck
NO CHIPS, PRETZELS, CRACKERS, NUTS (even in ice cream), or anything to cause possible chewing.  Not worth getting it messed up.

YOU WILL BOTH DO GREAT!!  You will figure out what consistency works and what doesn't.  Go day by day and take it slow.  Don't get too excited and try too much too soon.  Always keep jello and pudding on hand.  They love it and its easy.  There's 8 million flavors too!!

I didn't appreciate how much the jaw not being wired was going to help.  Use it to your advantage.

Please feel free to email if you have questions!!!


Jennifer Ford said...

Great help for us! Thanks

Renee LaDue said...

When Kevin had upper and lower jaw reconstruction we would use beef or chicken broth in the Ninja to liquefy food. Burger with no bun and beef broth was really good. One night I had Kevin make a soft shell burrito just the way he liked it and then I used the beef broth to liquefy it and I was really good. We would cook Mac and cheese regularly and then use warm milk to liquefy it. So he pretty much ate through a syringe anything we ate. Hope this helps! Love to you all.

amanda said...

Wow! Camden's surgery won't be for a while yet, but I love your tips. Great ideas!

Vanessa said...

God Bless you all!!...Love your blog and have beautiful kids!!...

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