|I'm not gonna lie to you at all.....Jedd's feeding issues will take years to overcome. : (|
We have been doing some type of therapy with him since he was about 4 months old. He is current 24 months old. So that adds up to 20 months of therapy. Either Private ST or OT through Early Intervention.
Prior to trying to go oral we did solids (baby food stage 2) through his feeding tube. that greatly decreased his vomitting and allowed him to pack on some serious weight for the first time in his life. All of that made it possible to start what we did.
Inorder to get hom oral from tube feedings this is what I did, the short version....LOL(It will be long..hehehe)
We started out doing a 1cc sryinge of food. We would give him aobut .3cc at a time. We gradully over weeks increased it to 1cc all at one time. Once he coudl do aobut 30 of the 2cc at a sitting we went to 10cc sryinges. Those worked well so we did not go any bigger.
During that time we switched our focus to forumla, a toddler one, Peptamen Jr. We did this because we could become tube free off of formula but NOT off of foods. Once he could take a coupple of oz that way we moved to a straw type cup.
Jedd "drinks" from a Sally beauty hair supply hair application bottle that has been retro fitted by early intervention. The top has been cut down and at first we used fish tank tubign for th estraw...LOL We now use commercial grade ice maker tubing.
He really doesn't "drink" form it, more of I squeeze it in to him. We do give him th eopportunity to suck and swallow, it's just that his muscels even to this day are weak inside his mouth. He is getting better.
We used the TV as his distraction. We did NOT however go full out in the distraciton dept. though. For example I don't turn the TV off when he doesn't eat. We do it sometimes now if he is being a booger. heheheheh It seems pretty effective at the age he is now because he rellylikes the TV since he gets to watch it quite often due to his eating issues. : ( so when it goes off he really wants it back on.
Once we built him up to taking 2oz of formula orally at a time, we dropped daytime tube feedings and went to 2 hour feeds. And NO I NEVER left my home once we did that. I was house bound for months during this process. I couldn't even go to WalMart, barely.
We built him up to being able to tolerate 3oz at a time and then we went to 3 hour feeds. During this entire time he was still gettting 10hours of pump feeds overnight to compensate for calories and hydration. It was formula pump feeds but it would still hydrate him.
Around maybe Springtime (April maybe I can't exactly remember) We started doing solids by mouth again to try and keep stuff down better. Iknew we had a BIG feeding appt coming up and KNEW from research wha they would be loooking for so the OT and I started messing with Jedd's schedule to get him on one they would like to see. That, my friend, was hard hard work.
We had to build a schedule that included 3 melas of food and formula and 2 snacks. We were not worrying aobut water at this piont becasue yet again, he was still pump fed overnight for the 10 hours.
We did 8:00- breakfast, one 4oz jar food and 2oz formula. 10:00 snacktime, 2oz of forumla. 12:00 one 2.5oz of food and 2oz formula. 4:00 Dinner, 4oz food and 2oz formula. We didn't have the second sancktime at this piont because Jedd was going to get on his pump at 8:30 and we needed him empty for meds and the pump so we would not get pukes.
That scheulde has evolved along the way BTW.
At our meeting with them in June we moved to cow's milk fortified with CIB powdera nd flavoring for taste. It has more cals than the Peptamen JR per oz. Also they wanted him to be ingesting foods and drinks that were NORMAL for his age. So we moved to milk...LOL
We now do:
7:15ish, meds and at least 1oz water
8:00 Breakfast: one 4oz jar food and 3.5 milk
10:00 Snack: one 3oz container of liquid Yogurt, we use Danimals
11:00 2.5oz water
11:40 Playwith food time...LOL
12:00 Lunchtime: one 2.5oz jar food and 4.5milk
3:30 3oz water and meds
4:40 Play with food time
5:00 Dinner: 4oz food and 3.5 milk
7:30 Snack 4.5 milk
I hope this helps you out some. Jedd still will not tolerate ANY solids by mouth. He has just started to take Chester's Puffedcorn pretty well. And my that I mean biting, chewing and swallowign them WHOOHOO!!!!!!
ALL durign this time we used various tools in and aroudn his mouth to desensitize his hyper sensitve gag reflex. Over the years we have used: a Nuk Brush, a Z-Vibe and all it attachement tools, Vibrating Jigglers, we have th ealigator and the elepahnt, and vibrating teethers, we have a corn cob. Jeddloves that corncob, he will STILL chew on it if he sees it.
You can find the above tols by googling them. Our favirte co is Ark Theraputics. We have ordered lots of stuff from them and they have GREAT customer service.
We also have done exersizes with the outside and inside of Jedd's mouth. All in hopes to desensitize tha toral aversion and hlep him to accept food.
YES I would see the clinic and get their input. Feeding averison vary sooo widely that it is best to get the child SEEN. each child needs to be treated as an individual. They CANNOT be all lumped to gether. Ther are soo many different types of averions that the approach for the child in question should be "built" for THAT child's needs.
We will be getting an eval at Richmond's Feeding Clinic in Richmond VA at the beginning of the year. So even as far as we have come, we still need help. :(
I have to go feed Jedd breakfast now, but let us know if you have any other quesiotns. ((HUGS)))