**shanlubey

st.augbride

Hi there! Thanks for the welcome, and yes, it seems like we're in a similar place! I saw in an earlier post you said that your son is in speech therapy. We're just about to start. We had an oral motor evaluation for feeding, but I think we're going to need to up the intensity of all of ds's therapies, especially speech. What kind of work have you guys been doing in speech? We're working now with a developmental pediatrician who is helping us create a plan and goals. It's just all so overwhelming! There's also something about the year mark: I'm so grateful to be here and in a better place, but also so drained from all the appointments and unknowns.

shanlubey

We just started speech therapy this year, and it's been pretty exploratory so far. So far, she uses a Nuk brush to stimulate different parts of his mouth and looks at his oral skills. He makes sounds but is struggling with words and eating. We go to the therapists office in two weeks for a group eval. Then we start full blown twice a week visits in the home. It never ends. 

st.augbride

Never ends is right. We had three appointments today: PT, then feeding f/u, then endocrinology. I am 'so beat' from it all and look forward to things hopefully lightening up at some point. Yeah, we use the nuk too and some facial exercises to try to desensitize his face. He babbles many sounds, but no words, not much gesturing, and he is a very picky eater (only will feed himself, so still mostly on formula/breast milk). Apparently our ST offers an intensive two week feeding intervention where we meet every day for two weeks to deal with feeding and sensory issues, so I think we'll probably be doing that soon. How on earth it will fit in with our schedules and work I have no idea...

shanlubey

My son will NOT feed himself. He refuses to chew, so what ever we give him he swallows, and then throws up. He will not even hold a bottle. He refuses the sippy,... you know, all twelve brands we use. It's never ending..

st.augbride

The feeding issues are so hard to deal with. Ds does feed himself...crackers. Only crackers! If anything is even slightly soft, forget it. We can put stuff on the crackers, but again, it has to be crackers... So I think we're on the bottles for quite a while longer. Our SLP told us to skip the sippy and use a straw cup to help strengthen his muscles (not that he took to the sippy anyway). She gave us a straw cup that she put together and it works great. It's a small plastic bottle, the kind used in hair salons for hair dye, and then the straw is therapeutic tubing that she special ordered. Anyhow, it's nice because when you give the bottle a light squeeze the liquid comes up through the straw so he can realize what it's for. From there, he slowly started taking sips on his own. It's certainly a long, hard and tiring road. I guess we just take it one day at a time!