|I know lots of kids who need the tube long term and maybe that will be the case since you have other medical issues going on. As far as cliinics in your area, I don't t hink there are any there. Most parents end up traveling to get seen at a clinic. We traveled 2.5 hours away to see the one we went to. We also are fortunate enough to have one in out city that was pretty decent. |
The reason I mentioned KKI is because they are a multi-disciplinary clinic. They take everything into account when it comes to feeding issues.
With Jedd, he too seemed to have NO suck whatsoever. His oral feeds honestly started with a desperate Mom (Me) who decided, He's orally averse to everything, every type of bottle and every type of sippy and the spoon. So, I decided to try a syringe loaded with formula..
We are talking a 1cc syringe though. And I would only give him small small amounts at a time, about .2 to .4 CCs at a time. As he did better, we were able to increase it to a full cc at a time and eventually we moved to 10cc syringes.
Once he could take a few ounce with the 10ccs we moved to a Sally Beauty Supply Hair Color Application Bottle. It was cut down and retro fitted with fish tank tubing for the straw.
We eventually used ice cube maker tubing, it was stronger and he had been shredding the fish tank tubing to pieces...LOL
This is the bottle that just about all of the feeding clinics on the East coast use with their feeding aversion kids. It allows the parents and therapist to squeeze up the fluid a tiny bit at time.
It is also VERY thin (the plastic) so it will reward a VERY weak suck.
We have done a full tube wean at home and it is very very stressful. Life will end up revolving around oral feeds. It was and still is the hardest thing we have ever done. There were times when I could not leave the house for days. His feeds were soo close together, that a car trip would have caused him to vomit.
We started slowly with that bottle. He would take like 1 ounce, so I would wait one hour and give him one more ounce. After a bit, we pushed him to 2 oz and went to 2 hour feeds....we continued until we jumped to 4oz at a time and eventually landed at around 9-10oz at a meal 3 times a day.
This is his current feeding schedule and I know the major clinics like to see 3 meals and 2 snacks per day. You also have to build in hydration (water) times as well. It can be tough.
7:00 4oz water and meds.
8:00 breakfast (4oz of applesauce or yogurt) and 5oz fortified milk.
10:00 3oz of danimals yogurt or V8 Frusion juice.
11:00 3oz water
12:00 he has moved to solids here, but we try to get in at least 4oz of it and he gets 5oz fortified milk.
3:00 4.5oz V8 Frusion juice and meds. (we used to do water here but now do the juice as Jedd will not take any veggies. This is to supplement that.)
4:30ish Dinner he will eat whatever we do or I make sure I make something I know he will eat. Again, we try to get in about 4oz and then he drinks 5oz of fortified milk.
7:30ish 6oz fortified milk.
He also snacks on "normal" snack stuff throughout the day. If he asks for food, I give it to him.
Now, I know this looks daunting, but, we have worked with EI with our OT for just under 2 years to make this kind of progress.
Also, I made Jedd all of Jedd's pureed foods when that was all he would take. That way, I could make them thin and then gradually over time, I made them thicker and thicker, until one day I tried a few of them in their original state. These taste sooo much better and a toddler KNOWS the difference between baby food and yummy pureed table foods.
This also enables you to "boost" anything that you give so you can get more pack for your punch. We used Olive oil and Flax seed oil, Sweetened Condensed Milk, Heavy whipping cream....all sorts of stuff. Oh and we used alot of Carnation Instant Breakfast (CIB). That's what we fortify his whole cow's milk with still to this day.
We used a Magic Bullet and here are some of the things we pureed for him to eat: Spaghetti O's, Van De'Camps Beenie Weenies, Spaghetti and Meatballs, Campbells Creamy Chicken Soup (that one is hard to find but it has high cals in it), Beef-a-roni, Easy Mac N Cheese, I used milk instead of water to make it......I could go on.
If you look at WalMart, almost all of these foods are sold in small 8oz cans, except the soup one. That way, once you puree them, they make two 4oz servings. I would put them in used clean glass baby food jars. I could also calculate how many cals were in each of them. I have impressed a few dieticians with that...LOL
Anyways, that's just a bit of what we did. Oh and we also used an Elephant and a Alligator Jiggler. You should be able to find that on line as well. Let me know if you want a link to that. It's a "toy" that is rubberized on the top in the shape of the animal. you can turn it on and the animal part vibrates. Jedd loved to walk around the house chewing that thing!!! LOL It was great.
The Z Vibe also has a spoon attachment, Jedd loved to eat off of that while it vibrated. He loved the vibrating sensation in his mouth. After a while, we were able to stop using the vibrating, and then eventually we moved to a regular hard spoon. The Z Vibe one is VERY VERY flexible and flat. Which is good for orally averse kids.