I had my feeding team come today for a visit. They include a dietitian, an OT and SP. They have been working with Wysdom since he came home from the hospital after birth(about 2 months of age). They have been pretty conservative in regards to his feeding. Prior to his OHS in May my OT worked on fine motor skills. They didn't want to push him or try anything until after his surgery.
So fast forward to post op. They have been coming to visit us and trying to see what Wysdom will do orally. (To recap from an earlier post. he breastfed and bottle fed for the first month and for the remaining 7 months he spoon fed a little and has an ng since birth). So since OHS the plan was to try to get him to eat orally while he has his ng in. At their instruction I have focused on starting cereals and fruits/veggies. For the last month we have worked our way up to eating cereal twice daily with a little fruit or veggie added. There has been really not talk of introducing liquids orally though. So I just assumed once we got the solids started that we would turn to the liquids.
So here comes my frustration!! So today I mentioned to them again that I have an appointment this week with a GI doctor re: a g tube. I have had this appointment since prior to Wysdom's OHS. I asked them what they thought we should do. The sp said that "in 6 months time she doesn't see him taking in all of his liquids needed and that she is not confident that he could be tube free". So my frustration is that yes we have been focusing on cereal...but why are they not helping with liquids. Today I had to ask them to give me some ideas of next steps and a possible sippy cup to try. It seems like they have made up their minds before even giving it a try. Ugh. I was very upset today. They haven't watched him try to drink, haven't suggested ways to get him to drink. They have just been talking about how much cereal he is eating and what foods. Today I think if finally hit me that they really are not doing much to help us at all, besides writing down his volume of cereal and how often he eats.
Sooo....I am a little stressed out and frustrated and upset with the whole feeding thing. Really I am not upset at Wysdom of course...just the whole process of it all. To think I have waisted all of this time meeting with them weekly and they have made up their minds already before they have tried anything. As you can see I am very emotional about this. I have now decided to do as much work myself in trying to teach him to take liquids. I am going to do my own research on what steps to take and what works and doesn't. If in the end he needs a g tube, so be it. At least I will know that I have tried.
So if you have any experience around feeding or just have a story to share I would love to hear it. If your child has a g tube, I would love to hear how that is going and if you are happy with it because it may become a choice we have to make. As well I am looking for info on sippy cups that you may have chosen to use? I have heard mixed reviews about using sippy cups in relation to oral motor development.
In all of this, Wysdom tried squash today and I think he actually liked it....he only spit a little bit out=) Thanks for listening!!
2 comments:
Not sure my experience will be of any help, but... It took Goldie 2 months before she able to nurse exclusively. Until then, I used a finger feeder when she was too tired or I couldn't get her to latch. After that I thought we wouldn't have any more problems. When she turned two breastmilk was still the only liquid she was drinking successfully. She gags and chokes on everything else. A swallow study that showed nothing is wrong. I started thickening her drinks myself and she is doing much better. I've asked why she was able to nurse, but not drink from ANY kind of cup. They think it must be the position she is in when she nurses. I'm sorry his feeding team haven't done more to help you. I remember feeling like I was on my own teaching Goldie to nurse. It may take time, but I'm sure you will figure out what will work for Wysdom. I hope someone else has some more helpful suggestions.
Hi,
I just found your blog--Wysdom is adorable! I haven't read back through your blog, but it sounds like the immediate need is for information on helping him learn to drink. I highly recommend using a straw cup. You can use a juice box (so you can squeeze the box and the juice will go up the straw to give him the idea), or, my preferred method is with the Honey Bear cup. http://www.talktools.net/s.nl/it.A/id.771/.f
Wysdom does need specific oral motor exercises to get his oral musculature ready to handle food and thin and thick liquids. You may find it's easier for him to drink thickened liquids (there is a thickening agent that can be added to liquids to make them thicker. I think it's called Thick-It). Has he ever taken a bottle? If he hasn't had much experience with suckling then he will likely have a difficult time with a sippy cup. A sippy cup requires a suckling technique, with the tongue moving forward and backward against the palate. A straw uses a completely different tongue movement. You can try to make the movements yourself so you understand which muscles need to be used. If you think Wysdom has more expertise in using one or the other set of muscles, then that should be the method of drinking you'd focus on right now.
Of course, if he does end up with a g-tube, he will still be taking things by mouth, and he will learn how to drink. It just would be nice to be able to avoid the surgery.
Take a look at the TalkTools site (honey bear). Give them a call if you can, and ask for some advice. I know there are very few therapists who are trained in this kind of therapy, so don't be too hard on the therapists--they just don't know how to help. Wysdom needs lots of oral stimulation and exercises to get his mouth to work well. The time and energy you put into this will be repayed not only by successful feeding, but also with clearer speech down the road.
Wishing you well,
Beth
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