Today's speech therapy didn't do much to alter my opinion that it is a waste of time at this point. Not much was different today than the first time except Rhys actually ate a little, whereas the with the first therapist he outright refused to have any part of it. He ate a little from the spoon and wouldn't you know he decided to gag for the first time ever today... scribble scribble into the notes. She tried to place him in a regular high chair and he was in an awkward position so I really think that had everything to do with it because he has never gagged on anything in his life. Then he turned his head to refuse the spoon and also pushed it away. After the spoon we tried bottle feeding, which he was super hungry and attacked it. The therapist got a perplexed look on her face when I told her out "recipe" for his milk and her eyes about bugged out of her head when I told her we put apples or bananas into his bottle. Don't I know that bananas are the number one food on the do not eat list for kids with reflux. Umm, nope, never heard that and neither have any of my friends who have kids with reflux. His pedi thinks it's fine, as does the GI doctor, you're the first person to bring it up.
I chatted with her about this and that trying to get her take on things. Overall she thinks Rhys did well, he isn't showing an aversion of the spoon he just needs practice. As far as the bottle, we tried a new nipple called a Pigeon brand y-cut nipple. I tried to add a link but couldn't find a good picture. This is a nipple sometimes used for kids with cleft palate. Total disaster. At this point I am of a mind that while he is an inefficient eater he does eat (even though he has his bad days) and we've been playing his game and have done whatever it takes to get his milk into him. One of these days he'll be able to tell me what the deal is so as long as he continues to eat, the doctor is happy and he is gaining weight let him have the thickened milk!
I think I am so frustrated with all the newbie therapists because I have to explain everything with each new person. They don't know his story so they are concerned he is on 3/4 liter oxygen and that he is on Prevacid and wants his milk thickened. Even though Rhys doesn't typically exhibit behavior that would indicate he has reflux the Prevacid always is a red flag and no one can get past it. He coughed a tiny cough, the same as he's been doing since he started drooling so much, about 20 minutes after he finished his bottle. Scribble, scribble into the notes... that is reflux. OMG, give me a break. Maybe it is or maybe it isn't. Overall I was okay with the therapist until she asked if Rhys had genetic testing done. His ears are too low she said. Are you for real? Did you really just say that? First, Rhys has my ears, and his ears look to be in the same spot on his head as every other person's ears I looked at on the way back to the car. I will admit that they are sort of pushed down because of the way the cannula hangs since we no longer tape it to his face. But do you honestly think that after 5.5 months in the NICU the doctors would have missed the fact that he had a genetic disorder?? He was premature for crying out loud, why do his eating quirks have to be related to anything else? Of all the doctors who saw him in the NICU, of all the tests they ran, scans they did, and of all the doctors he has seen since he was discharged not a one has mentioned a thing about it, but a speech therapist tells me his ears are too low. You've got to be kidding!
After all that the recommendation was to try the spoon once a day, so we can work up with full meals with the spoon. This was the second attempt to try this outside the home, and neither time was any good so I am thinking I will just have ECI come in for speech to work on his eating since they do it in the home. If that doesn't work I guess we will figure that out when we get there.
I chatted with her about this and that trying to get her take on things. Overall she thinks Rhys did well, he isn't showing an aversion of the spoon he just needs practice. As far as the bottle, we tried a new nipple called a Pigeon brand y-cut nipple. I tried to add a link but couldn't find a good picture. This is a nipple sometimes used for kids with cleft palate. Total disaster. At this point I am of a mind that while he is an inefficient eater he does eat (even though he has his bad days) and we've been playing his game and have done whatever it takes to get his milk into him. One of these days he'll be able to tell me what the deal is so as long as he continues to eat, the doctor is happy and he is gaining weight let him have the thickened milk!
I think I am so frustrated with all the newbie therapists because I have to explain everything with each new person. They don't know his story so they are concerned he is on 3/4 liter oxygen and that he is on Prevacid and wants his milk thickened. Even though Rhys doesn't typically exhibit behavior that would indicate he has reflux the Prevacid always is a red flag and no one can get past it. He coughed a tiny cough, the same as he's been doing since he started drooling so much, about 20 minutes after he finished his bottle. Scribble, scribble into the notes... that is reflux. OMG, give me a break. Maybe it is or maybe it isn't. Overall I was okay with the therapist until she asked if Rhys had genetic testing done. His ears are too low she said. Are you for real? Did you really just say that? First, Rhys has my ears, and his ears look to be in the same spot on his head as every other person's ears I looked at on the way back to the car. I will admit that they are sort of pushed down because of the way the cannula hangs since we no longer tape it to his face. But do you honestly think that after 5.5 months in the NICU the doctors would have missed the fact that he had a genetic disorder?? He was premature for crying out loud, why do his eating quirks have to be related to anything else? Of all the doctors who saw him in the NICU, of all the tests they ran, scans they did, and of all the doctors he has seen since he was discharged not a one has mentioned a thing about it, but a speech therapist tells me his ears are too low. You've got to be kidding!
After all that the recommendation was to try the spoon once a day, so we can work up with full meals with the spoon. This was the second attempt to try this outside the home, and neither time was any good so I am thinking I will just have ECI come in for speech to work on his eating since they do it in the home. If that doesn't work I guess we will figure that out when we get there.
4 comments:
I'm sorry therapy didn't go well. That was ridiculous of her to say that about his ears. My DS (a 26 weeker) never took a bottle well, but once he got the hang of food he started to eat better.
I understand exactly where you are coming from. Just yesterday, Ryan and I were talking about how it seems that Olivia's therapists just have to find something wrong with her. They brought up autism again because she doesn't point or "show" me things (she just grabs my finger and takes me to it.) She shakes her arms and doesn't play appropriately with toys. She shakes them all and after months of trying to get her to use her arms. . .I don't really care what she does with them. She flips through books too fast. I'm supposed to make her study the pictures longer. It's so frustrating. Maybe she's just a little delayed because she was born 17 weeks early? Hmmm. . .yes, maybe that's it. I understand that they are just trying to alert me to possible problems, but I feel like saying, "Give me a break!" It's almost as if something isn't "wrong" with her than it must mean that I'm not working with her enough or not doing something right. Anyway, just wanted you to know that you aren't alone.
Sounds like a horrible experience! Hopefully just working with him at home every day will do the trick. I can't believe the therapists asked about genetic testing...jeez. Clearly Rhys is doing well if he's sitting solo when he's 4 months old adjusted!
I found your blog through another mom of twins website. I just wanted to let you know that I have a daughter who has a lot of issues with eating as well and for the first 7 months of her life they wanted me to see feeding specialists which I found to be totally useless. I finally told the GI doctor that was the case and he said that I needed to do what I felt was best. My daughter is now almost 11 months old and has good days and bad days with eating but she is holding her own so we are happy. They also had me try at least 6 different types of nipples and bottles. Finally I found the Dr. Brown large mouth bottles and nipples and they work just great. As for the spoon issue they told me the same kinds of things and I would just let her practice and work on it and she is doing fine, maybe not perfect but who is. Hang in there and know that as long as you and your husband and the doctors feel that Rhys is doing okay then just continue on. I also found that having so many extra appointments that I did not find beneficial just seemed to stress Avery out more.
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