gosh im so envious that other babys with prs are actually drinking every story i read it always starts of with the normal struggle getting our prs babys to feed properly but eventually it seems like alot of babys end up getting feeding tubes out before there cleft repair. At the moment i feel like my baby who is nearly 8 months old will always have a feeding tube. He is so inconsistant, on bottle off bottle, on, off. For the part 6 weeks his been teething so off everything bottle n solids. Than go's back on solids,now off again.but seems fine to health pro's cause his just teething.the prob is i work so hard for ages to get him to suck bottle and he may do it for a week or 2 than something always happens to break his flo. For nearly 2 months now he just bites the bottle no sucking at all. My speech therapist wont talk to me or respond to emails cause she's a moody b@*&! Who wants me to stick with his stupid bottle that he has always hated instead of trying something different. From now on its trial n error im going to experiment. I tried a sippy cup today although it might take some getting use to he seemed to like it but the down fall is he chews the spout once he gets the milk out of it he spits it out. Im starting to think he hates the taste of my milk?i wonder if i blend my milk with fruit or something if he will take it better?.
Oh dear I feel for you and know how you are feeling I thought our little boy would never get rid of the F&^%$ tube, but he did. Good on you for trying the cup - that is what we are doing too - although we have had tube out for a few months. You know what we did we got a special cup called a flexi cup and it works well - he is even nearly willing to hold it himself now - but spills much of the milk. Have you tried mixing his remaining milk into custard - we mix a whole cup a day now and our son loves it - most of the time and I put some mashed banana in it too. It means 1 cup less of milk I have to convince him to drink:) Here is the link to the cup - http://www.therapytoyshop.com/category.php3?category=Self
hope it helps - pop back and let me know _ I posted another post on the feeding page - it may help you too. check it out.
All the best - if you want any more help or a chat please leave your email address and I will contact you.
Hi there, I've so been in your shoes! Balin was naso fed till 1 week before his 1st birthday. We battled weight gain etc and at one point was doing continuous pump feeds, which was a nightmare!! Balin never sucked- even after his cleft repair, as he never learnt initially so lost the instinct. I tried every cup under the sun. One that i swear by is made by Mag Mag, you can buy it at Safeway. It is a three stage cup system. The first stage includes a soft bottle like teat, but it is white, long and kind of flat in shape. It has a large cross cut teat. It was perfect for PRS babies as it is long, like the haberman teat, but flat like a chew chew (another kind of feeding teat for cleft babies)Balin would chew the teat to his hearts content or simple compress his mouth around it and some would dribble out, sparking his interest. You can them purchase a straw adapter etc for the cup at later stages. It was the best money i ever spent!! Balin is now 3 1/2 and still loves a warm milk or cup of tea from this cup. Give us a call if you need more info and i will get better details. Just call the main number 09 9798 9373. Good luck. PS: Good for you! Experiment away. PRS kids are all unique. The only way to get ahead is to work out what's best for your baby. Doctors etc sometimes are not aware of this. OUr kids are never textbook. Experiment away!!
Hi, I too know what you are going through. Our son was tube fed up until he was 7 1/2 months old. When he was about 5 or 6 months old he went a full month without taking anything orally, so everything was tube fed. a huge shock as we were told in hospital that he would build up his volume and the tube would come out quite quickly - going home from hospital at 1 month old with the tube was a huge shock for us, we never expected to still be tube feeding him at 7 1/2 months!! He also had glue ear so we knew at 4 months of age that he needed grommets, but they routinely do them with the palate repair, which they wouldnt do with the ng tube in - felt like we were going around in circles. Ethan also had severe reflux so his developement was behind so we had been referred to most departments in the hospital and were doing physio, seeing the feeding team etc. I couldnt see why they would refer us to everyone under the sun, yet when they knew he coudlnt hear due to glue ear, sit by and wait until he was 1yo to do something about it. We therefore went private and had the op done. So glad we did, atleast we knew we did everything possible, rather then sitting by and waiting. The paed was talking about the liklihood of putting a PEG into his stomach when he turned 1 so they could do the palate repair, thats how bad he was at feeding, with no explanation or light at the end of the tunnel because all the barium tests etc came back normal. I came across a website for tube fed kids (I think i posted the link under the feeding section) and read up on the Graz method philisophy. We were about to sign up for the program when Ethan pulled his tube out in the middle of the night (yet again!!) and we thought we would wait until morning to put it down, he would have to feed from the bottle if he was hungry between then and the morning. Long story short (I know i have rambled on already!) we monitored him for hydration etc and over a week, he went from taking 80ml a day of thickened milk with extra calories, to taking approx 400ml a day orally (we didnt need to put the tube back down because he was hydrated within himself, just slowly building up the quantity). The first week he lost 180g, the second week he continued to increase his intake and actually started to put on weight. That was the scariest 2 weeks of my life and glad it is behind us. We have remained tube free since then and Ethan will turn 1 on Feb 22 2010. He had his palate repair on 15 Dec which we never predicted 3 months earlier, and has come along in leaps and bounds since the surgery. I hope your son is doing well and is now tube free. If you want any more info or feel like a chat, let me know. All the best wishes x
