The problem with neuromuscular diseases (besides being incurable) is that every time you think you have a handle on the situation something new stirs the pot. Max has many doctors. He sees a pediatrician, neurologist, pulmonary doc, gastrointestinal doc, ENT, and now an orthopedic surgeon.
We have had orthopedics on our to-do list for some time now. Children with SMA have scoliosis, and other major orthopedic issues from the lack of mobility and muscle. Aaron and I like to consider ourselves on top of any problems. We focus on making sure Max wears his back brace, stretching to prevent contractures in his joints and muscles, and gets plenty of time in his stander to build bone density. That being said, the body breaks down far more quickly than one can imagine. SMA is already taking its toll on Max’s bone structure. Thankfully, he has less than a 20% curve in his spine, which is what they expected to see. What we did not expect was that both of his hips are almost completely dislocated. To look at Max he seems to be in pretty good shape for a child with a muscle weakening disease, even the surgeon was a little shocked by what she saw on the x-ray. What does this mean? Well, it is both good and bad. We were hoping his hips were in better shape, but it is better for both to go out rather than one. Max seems to not be having any issues with pain or discomfort, which the surgeon says is a good sign and that it will probably be several years before we need to worry about pain management. So we continue with life as usual, we change nothing in the way we care for or manage Max, now we just know. They do not advise surgery to fix the hips as muscle is what helps hold them in place, and well, Max doesn’t have that. They would just pop right back out again. Although its funny, because ever since I spoke with the doctor I can’t help but be more careful in the way I carry and move Max, wondering if I am doing anything wrong that may have contributed.
There are days when we feel like we have the disease beat, then there are days when we feel like the SMA is beating us. It keeps us humble. SMA could easily control our lives, and many parts it does, but Max is in no pain and seems to be progressing happily. The little smarty pants is even starting to respond to us in Spanish…thanks Dora and Diego…I need a Spanish-English dictionary to speak to my child, who is not even 3 yet. Go figure.
On another note, we have raised 25%
of our goal for the MDA Walk of Hope.
Thank You Thank You to all those who have donated.