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| Haley and Rachel |
Rachel: Occupational therapy continues to work with Rachel on getting her to eat. She has made only small progress with it. It will be a long, long road to get her eating normally. She will swallow small amounts of water and sometimes, if we are lucky, small amounts of yogurt. She continues to put foods like pretzels, crackers, cheerios, etc in her mouth, but will only chew them and spit them out. She just doesn't seem to know how or is afraid to swallow. Only continued practice and therapy will eventually get her eating. If anyone has any advice or has had some experience with what Rachel is dealing with please comment. I would like to know if anyone else out there has had any luck with getting a child to eat that has severe oral aversion like Rachel.
Last week Rachel had a 6 month follow up appointment to evaluate the continued use of her SMO's (supra-malleolar orthosis). These are the foot/ankle braces she wears to help with her walking. She will have to continue to wear them for at least another 6 months since she does have some right sided weakness. Her right sided weakness is not too terrible, but the SMO's will help strengthen that right side when she walks.
Rachel is doing better with age appropriate play. Rachel likes to hug her baby doll. She sees me holding Kayla and is "acting" out what she sees. She likes to roll a ball back and forth with us. She is learning to do puzzles and loves to look at books! She also really likes to watch cartoons on the iPad. Rachel is a very curious girl and looks at everything in detail.
Since Rachel has severe hearing loss she is learning sign language. She is picking up on more basic signs. She knows how to sign book, ball and more. Yes Rachel is still wearing hearing aids, but its a struggle to get her to wear them. She pulls them out all the time. Its also somewhat of a struggle to get her to wear her glasses. Overall, Rachel is doing good.
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| Rachel |
Haley: Haley recovered well from her tonsillectomy back in February. We are so glad those HUGE tonsils are out. She is able to swallow easier. Haley is doing ok with her eating. She still prefers smooth baby foods vs. textured foods. The occupational therapist is working with getting her to chew more textured foods. Haley is still a tiny, petite girl, but I can tell she has grown. Haley will be seeing the endocrinologist in June to evaluate again the need for growth hormone or not.
Like Rachel, Haley was wearing SMO's. Well Haley no longer needs them! Haley is walking great.
Haley had an appointment with the retinal specialist earlier this month and the doctor saw no changes in her right eye. The doctor could still see some retina. He told me that her right eye is in no way normal, but she does have some retina that is allowing her a little bit of vision. Haley is doing so well with such limited vision. We assume what she can see at this point, but she loves to look at lights and we can tell she sees people and objects. She gets around well. She doesn't run into things as much as she used to. She is learning to use the small amount of vision that she has. It's also a struggle to get Haley to wear her glasses. We still don't know for sure if the glasses help her little bit of vision or not. We continue to try to get her to wear them just in case.
Haley has been making more vocal sounds lately. She says "ma, ma" and "ba, ba". Haley has moderate hearing loss. She has been wearing her hearing aids fairly well. When Haley had her tonsillectomy the doctor attempted again to get tubes in her ears, but her ear canals are still so tiny. Once tubes are able to be placed, I know Haley will be able to hear more. Overall, Haley is also doing well.
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| Haley |
Below are pictures of Rachel and Haley enjoying the nice Spring weather here in Houston, Texas. I love this time of year!
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| Haley and Rachel |
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| Rachel |
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| Haley |
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!!
ReplyDeleteYes, (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.
ReplyDeleteI 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.
ReplyDeleteIs she drooling continuously? If not, she does know how to swallow because she's swallowing her saliva.
ReplyDeleteThere 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.
ReplyDeleteHave you seen a speech-language pathologist? They are experts in feeding and swallowing.
ReplyDeleteTo 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.
ReplyDeleteI 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!
ReplyDeleteI'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.
ReplyDeleteI 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!
ReplyDeleteI 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?
ReplyDeleteI'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!
ReplyDeleteI'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!
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