tag:blogger.com,1999:blog-9145471442079731509.post8424085356102040739..comments2023-12-13T07:30:35.384-06:00Comments on Stansel Journey: An update on Rachel and HaleyAmandahttp://www.blogger.com/profile/17686734314850926180noreply@blogger.comBlogger13125tag:blogger.com,1999:blog-9145471442079731509.post-2205624286699628582012-04-03T15:32:14.299-05:002012-04-03T15:32:14.299-05:00I'm a Utah mom who has followed your blog sinc...I'm a Utah mom who has followed your blog since your girls were in the hospital. We had 23 week twins in 2006. Abby passed away at 11 days old and Josh is still with us and will turn 6 in June. Sounds like Rachel has a lot of the same eating issues Josh has/had. I have to say, I thought Josh would never ever eat. But he is doing tons better today. He still has his feeding tube, but we use it less and less. The progress was painfully slow and it was very frustrating. He is very stubborn and does things on his timetable. Today he'll eat things like bread, cheese, hotdogs, crackers, chocolate--nothing wet (fruit) or crunchy. He really likes strong flavored stuff like yellow mustard, A-1 sauce, or soy sauce. He'll dip bread in soy sauce. Skipping feedings never worked for us. We did go to a blenderized diet where I just blend up table food (peanut butter sandwich,egg yolks, fruit and grain bars, bananas, etc), strain it, and put it down his tube. I think this has helped. They say that a lot of kids starting eating a little after you do this (sounds gross, but they get the taste of table food when burping). For us it has just taken time. Hang in there--you are a great mom!Cindyhttps://www.blogger.com/profile/18356934489330840121noreply@blogger.comtag:blogger.com,1999:blog-9145471442079731509.post-83316735497715504342012-04-02T23:19:28.640-05:002012-04-02T23:19:28.640-05:00I'm a Utah mom who has been following your blo...I'm a Utah mom who has been following your blog since Rachel & Haley were in the hospital. We had 23 week twins in 2006--Abby passed away at 11 days, Josh is still with us and will be 6 in June. Sounds like Josh has/had a lot of the same texture/eating problems that Rachel has. He is still on a feeding tube, but is doing tons better. I didn't think he would ever eat "normal" foods, but he is doing better. Skipping feedings to get him hungry never worked for us. We tried thickening up his milk with a thickener so he wouldn't choke as easily. Progress was painfully slow. You may try strong flavored things--Josh likes tastes of yellow mustard, soy sauce, A-1 sauce. It will happen eventually--its very frustrating though. You are a great mom!Cindyhttps://www.blogger.com/profile/18356934489330840121noreply@blogger.comtag:blogger.com,1999:blog-9145471442079731509.post-19580423738343493622012-03-29T20:50:15.164-05:002012-03-29T20:50:15.164-05:00I am an SLP. Not sure what your feeding schedule,...I am an SLP. Not sure what your feeding schedule, but I would recommend giving her food prior to her tube feeding. Are her tube feeds continuous or bolus? Generally if they are continuous, maybe they can switch them to bolus. That would allow her to eat solid food and then you could supplement with tube feedings. Have you considered giving her supplements by mouth instead of the tube?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-9145471442079731509.post-10920386180486883772012-03-28T13:47:50.684-05:002012-03-28T13:47:50.684-05:00I used to work with the feeding program in Hershey...I used to work with the feeding program in Hershey, PA, and I do know they do amazing things with kids. But I feel there are other feeding programs closer to you that could be just as beneficial. I am sure you are doing your research on it though!Kennedy Clanhttps://www.blogger.com/profile/13107381553808740001noreply@blogger.comtag:blogger.com,1999:blog-9145471442079731509.post-31882780431564103552012-03-24T23:32:51.076-05:002012-03-24T23:32:51.076-05:00I'm studying to be an SLP and we do a lot with...I'm studying to be an SLP and we do a lot with feeding. I assume it's similar to what the OT is doing. If she's swallowing saliva, she does know how to swallow, but the two swallows are different in how they are patterned. Plus, the oral aversion issue is clearly a problem. I don't think that they will recommend skipping a tube feeding to get her to eat though, keeping her nutrition good is very important. You could try to time the feeding appointments though so they are before a feeding is scheduled.Boysmomhttps://www.blogger.com/profile/02484085135905423794noreply@blogger.comtag:blogger.com,1999:blog-9145471442079731509.post-61225676931564962912012-03-24T17:51:09.535-05:002012-03-24T17:51:09.535-05:00I have also heard really good things about an eati...I have also heard really good things about an eating program in Hershey, Pennsylvania, that is very successful at getting kids to eat with severe oral aversion. They use a more concentrated formula (Boost 1.5?) to help the child get more calories with less volume so they feel a little hungrier. Good luck!Paulahttps://www.blogger.com/profile/15712645709385851559noreply@blogger.comtag:blogger.com,1999:blog-9145471442079731509.post-63173267631220864402012-03-24T10:00:04.252-05:002012-03-24T10:00:04.252-05:00To answer the questions from the comments so far. ...To answer the questions from the comments so far. Yes Rachel is seeing a speech-language pathologist. Rachel doesn't drool continuously so I do believe she is swallowing her saliva. I have done some looking into the inpatient programs. Will continue to investigate and consider. I also think she may not be hungry due to the feeding tube. Will ask her doctor if it is ok to not feed her at one of her feedings to make her hungry. Thank you for all the comments! I do appreciate everyone's advise and help.Amandahttps://www.blogger.com/profile/17686734314850926180noreply@blogger.comtag:blogger.com,1999:blog-9145471442079731509.post-60376231603274199362012-03-24T09:48:27.758-05:002012-03-24T09:48:27.758-05:00Have you seen a speech-language pathologist? They ...Have you seen a speech-language pathologist? They are experts in feeding and swallowing.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-9145471442079731509.post-48898603509966914492012-03-23T22:44:13.653-05:002012-03-23T22:44:13.653-05:00There is an inpatient therapy "feeding camp&q...There is an inpatient therapy "feeding camp" at Baylor in Dallas. You may try looking into it. I know it has had success in many of our former premature patients that have to overcome oral aversion.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-9145471442079731509.post-60327674186402598712012-03-23T19:09:22.561-05:002012-03-23T19:09:22.561-05:00Is she drooling continuously? If not, she does kno...Is she drooling continuously? If not, she does know how to swallow because she's swallowing her saliva.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-9145471442079731509.post-56013911886174464722012-03-23T10:03:02.087-05:002012-03-23T10:03:02.087-05:00I wanted to point you toward this blog: http://let...I wanted to point you toward this blog: http://lettenbergertwins.blogspot.com/ One of the twins just went through an inpatient feeding therapy and it's what I thought of immediately when I read about Rachel. You might consider contacting this mom to see if she has any advice.Allisonnoreply@blogger.comtag:blogger.com,1999:blog-9145471442079731509.post-67346089371682537732012-03-23T06:50:53.023-05:002012-03-23T06:50:53.023-05:00Yes, (my 35 week) DD had oral issues. (although no...Yes, (my 35 week) DD had oral issues. (although not to the severity as Rachel). Our OT had us using a nubby plastic/rubberish toothbrush to play in her mouth. Rub on her palate, in her cheeks and push on her tongue to form shapes needed for chewing/swallowing. She didn't bite correctly so there was excerise/playing tug of war with a knotted washcloth. I cannot remember another one that has to do with a wet frozen washcloth. Everything was geared toward oral stimulation and awareness. She was over 2yo before she advanced to the chunky stage 3 foods. She is 12 now and yes there are still texture problems with certain foods.sbrennemanhttps://www.blogger.com/profile/07919527133256978346noreply@blogger.comtag:blogger.com,1999:blog-9145471442079731509.post-20160028977407627962012-03-23T06:15:43.653-05:002012-03-23T06:15:43.653-05:00Just a thought. A dr used to tell me they will not...Just a thought. A dr used to tell me they will not eat if they dont feel hungry. Could it be she doesnt know what "hunger" is since she has always had the feeding tube? Could you not give her a feeding and see if that increases her desire? Just a thought. All three are beautiful!!Anonymousnoreply@blogger.com