Typically, SMA type I individuals that have the SMA upper air way congestion can’t tolerate being up at an incline and they typically do best on their back with their head to the side. As time went on, Coby did best on his back with his head to the side or semi on his side.
Once the congestion started, we first started to try to use the Boppy for positioning and although these photos don’t show it we actually would hyper-extended his neck over the back and for sleeping that worked for a few weeks.
Then we started to use the changing table and we had him sleep on that in between us for a week or so but it was too big for the bed, so we moved to the snuggle nest next…
Then from there we started holding him to sleep…we did this because if we didn’t he would cry and when he cried he would get congested and would start to choke so we decided to hold him and to do that we held him on a temperpedic pillow….
We used the temperpedic pillow for number of reasons… because Coby always need to have his body completely straight or he had trouble breathing; if he had any pressure on his belly such as our body pushing directly against him then he had trouble breathing and as time went on he became floppy, so the pillow allowed us to hold him at all times.
From Day one, even before diagnosis, Coby cried when his dad held him unless he held him a certain way, if I put him over my shoulder and/or if he was in his car seat or swing… As time went on, we realized why this was happening. Coby early on could not typically tolerate any pressure on his belly because he solely used his belly muscles to breath, so he needed to be completely stretched out and not have his legs flexed up to his belly in any way and he could not have any buckles on his abdomen…so first Dave learned how to hold him…
Then came the carbed vs a carseat…
I liked this carbed because it had the handle….and because it was very portable…I got this one at Boston Children’s. Hospitals across the country have them or you can ask FSMA for one.
For a carriage, we used the Baby Jogger City Select Stroller with the Bassinet attachment. We actually took Coby for evening strolls every night in our tiny home…he loved it!!!
This basinet feature allowed us to keep his body straight and the the basket under it is quite big, so we were able to store all of his equipment there.
On top of using the temperpedic pillow at night, we would use that pillow and other pillows during the day to hold and position him…
This last contraption was put together by our EI physical therapist. It is a pet bed with a vibration/massage mat (that an adult would use on a chair), and then with the temperpedic pillow inside the pet bed on the vibration mat…He truly loved this!!!!! It helped to sooth him and to keep his congestion loose.
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.