Myotonic Dystrophy + Tummy Time = ????

lboers

Hi Ladies! My 4.5 month old baby girl has mytonic dystrophy which has caused her to have club feet (which she is in boots and bars for). As she has gotten older she has started to fall behind in the head lifting department. When being held in an upright position she can hold her head up for some time, however, when on her tummy she CANNOT lift her head. She can move it from one side to the other but that's about it. Also, when being pulled by her arms into a sitting position she just lets her head hang. Anyway, of course this is concerning and she sees PT/OT all the time and her neurologist suspects a lot of her lagging behind is due to the disease PLUS the heavy bar she is confined to 23 hours a day.

I guess I'm looking for some tips to help her with tummy time and gaining strength in her neck muscles, etc. Also, I saw this thing the other day (can't remember what it was called) but it was sort of like a Bumbo but for tummy time (does that make sense?). I'm wondering if anyone has used it and how it worked for you. I SEEMS like a good idea but she has so little strength in her neck that I think she would just dangle off the end of it and not gain anything from it. I plan on asking her PT on Wednesday but I figured you ladies may have some experience with it as well. Thank you thank you thank you wonderful, strong women!