It is hard to hear that I need to slow down when I feel like I am going 10 mph in a 55 mph zone. Well, slow down is what I heard at Max’s 1st feeding clinic appointment on Friday. At his appointment, we met with a doctor, speech therapist, and a nutritionist. Also, the speech therapist that does Max’s swallow studies stopped in for the feeding observation. The reason I applied for the clinic, was help to determine if Max was getting enough calories (determine the amount he needs) and help me work towards getting him off the tube. I know that isn’t something that would happen overnight, but I thought since he was doing well by mouth that I needed some additional help. His speech therapist he sees weekly referred me to the clinic and she was kind enough to join me at the two and a half hour long appointment. The team said that he is doing great, but they do not want to push any more textures at this time. They want him to become more comfortable with what he is currently eating by mouth (soft veggies, fruit, noodles, cheerios, etc.). They do not feel that he is safe enough to advance at this time because of his dysphagia and the possibility of him still aspirating, since he coughed during his feeding observation. They also want another swallow study in 3-6 months before we can give him more than two ounces of liquids at a feeding and more than one drink at a time. So, we have to let him take a drink and take the cup away from him for a short break before we give him another drink. I discussed him not doing well at his last swallow study because of his fear of being in a radiology room and they thought he may get over his fear before his next study. We will see. It was a very overwhelming day for me! I thought things were going so well, only to be told that we need to SLOW DOWN! This feeding stuff is definitely my biggest hurdle with RTS! We will follow up with the feeding clinic after his swallow study. I did get bit of good news from the appointment. Based on the feeding journal I provided the clinic, he is getting 43% of his required calories by mouth. I was SHOCKED to hear that!! 43%!! And the feeding team was very impressed by how excited he gets by food and how he wants to eat for having a NJ-tube then a G-tube. So, some words of encouragement!
3 comments:
What great news! Hey..I always say with RTS that slow is fast.
That picture makes Max look so BIG.
Kelly W.
Hang in there Kelly!! Max will soon be eating everything by mouth. 2008 was a really good year for our little guy and here's looking at 2009 to be even better!!
That is GREAT news! 43% is a lot! I think they're wise to counsel you to go slow. I know the first thing you want is to get him off the tube, but the most important thing is to keep him healthy and not force him into bad habits because he's pushed. The fact that he is eating, and is excited about eating, means that when he is finally ready to eat 100% of his calories, it won't be a challenge to get him to do it (like some tube kids who have oral aversions). I know "go slow" is not what you want to hear, but you should be proud of him and you for how far he has come.
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