This is the type of type that we put directly on the skin and then put the Nasal G. Tube on tube of this layer of tape so that the tube did not directly lay on the skin and then we held it in place with a tegaderm (opsite).  We also used this tape to secure the oxygen saturation probe and our probes would last about 2 weeks


Once the NG tube went in Coby was initially getting bolus tube feeds, but we figured out pretty quickly that he could not tolerate such because it put too much pressure on his belly and when there was pressure on his belly he had a difficult time breathing. So we had to change to using a pump. Also, Coby did not tolerate what a typical child his age would tolerate in fact his feed had to be really slow. At first, he was being breastfed but due to a low supply of breastmilk we introduced formula but we did not know that sometimes SMA children have difficulties tolerating formula feeds and if he had known that we would have probably looked to getting breastmilk via a donor or have tried Elecare versus the formula that we did introduce. A lot of SMA families with proper guidance do use Tolerex and Vivonex but due to Coby’s age I would have tried Elecare.


Due to Coby being floppy and congested, bath time at times was challenging. As time went on, we chose to get in the tub with him. One of us would lay flat and then we would lay him flat on us.


We would use this oral stimulator to increase his swallow and comfort him at times…


Once his suck was really weak we would hold his binki in for him or we would use little stuffed animals to hold it in...because he just loved having it in his mouth even if he could suck it!




Disclaimer: The information provided on this page and it's subsequent pages is meant to be additional support information. This is what worked for our family and may not work for every family. Please consult the appropriate professional, if necessary, before trying any of these suggestions. If you have any additional questions, please don't hesitate to contact us by clicking on the "E-mail My Mom" button below.