Long overdue - here's an update on the kids' puffy feet, aka Milroy's Disease, aka Congenital Primary Lymphedema.
At the end of 2012, Andrew is 20 months old. We began decongestive therapy with a wonderful lymphedema therapist in Denver back in May. His foot was pretty big and tight, and the texture of it was firm. He responded well to daily manual lymphatic drainage from me and weekly visits to the therapist for more thorough treatment. We also started wrapping his foot and lower leg with short stretch bandages in the standard lymphedema style (with cotton toe wraps) during the day. At night he had a lot of trouble sleeping with the wrapping, so we just did it in the daytime. It seemed to be helping to keep things under control even without night wrapping.
We made sure to give him lots of time in bare feet too, to make sure his gait and foot sensations continued to develop normally.
Once he got a little older, later in the summer, Andrew was fitted for a Jobst Elvarex day garment (his "special sock") and Solaris Tiny Tribute boots for nighttime wear.
The Elvarex garment was easier to put on and off, but it didn't hold everything in as tightly as wrapping with short stretch, so we would alternate which technique we used, depending on how busy we were going to be. The Elvarex garment is also very convenient for travel.
The Tiny Tributes also don't help as much as the short stretch wrappings at night, but they got him used to wearing something at night. After the 18 month sleep regression was over, he accepted wearing either at night, and so again, we alternated which technique, depending on circumstances.
All in all things are going really well. We are integrating the therapy into our lives, and for a rambunctious toddler, Andrew very willingly accepts the garments. On the days he gets cranky and doesn't accept them, we don't force the issue and he gets a break. If he goes for a day or more without wearing garments, his foot puffs back up again.
At the end of 2012, Clara is 6 months old. She has not yet started serious therapy for her lymphedema. Her right foot has returned to normal, much the same way Andrew's left one did after birth. Her left foot (the puffy one) seems to have improved some all on its own with no treatment, and it seems to be not as severe as Andrew's was at this age. But she also is somewhat affected in the left ankle and lower leg, which is different from Andrew. In the coming months, we'll start MLD and wrapping with her, to see if we can see some improvement.