I know there’s been radio silence around here lately. It’s not that things aren’t going on. There are definitely t h i n g s happening. Some of them not so great, but I haven’t really found a way to write them down or talk about them in a way that is productive. But, since the whole point of this little blog is to try and help someone who might be in our shoes in the future, here goes.
We had actually started seeing some progress in the reduction of swelling in Juniper’s leg using the Tribute. I think I mentioned on here that I wasn’t really that impressed with it, but that changed and we are pretty much only using the Tribute now. so.much.easier than wrapping. Anyway. For a couple of days in a row, things were looking great in the morning and I started getting excited, like light at the end of the tunnel excited. Then one morning, we noticed that her left hand was a little swollen. Now, in all honesty, her left hand had been slightly swollen a couple of times before, but it always went away so quickly so that I doubted what I saw. This time, it didn’t go away. The tunnel pretty much started closing in on me at this point. My mind raced through all of the things she wouldn’t be able to do now if the lymphedema was in her hand. Sew? Play piano? Pick up sticks and play in a sandbox?
We went to the pediatrician, we went to our O.T., the answer was the same: we have no idea what is going on. Though multiple extremity primary lymphedema seems to be fairly common from what I’ve heard from parents I am in touch with, it is out of the realm of ‘textbook.’ Fear, frustration, going over the myriad of what-ifs swirled around in my mind. I felt like if I had been on the brink of a mental breakdown before, this would surely push me over the edge. But, it didn’t. I guess we always have the capacity to handle just a little bit more.
Ultimately, it motivated me. I had been tossing the idea of taking Juniper to the lymphatic disorders clinic at Stanford, but I’d always pushed it aside thinking I didn’t need to go across the whole state to have them tell me what I already know: massage, wrapping, skin care, that’s it. Suddenly though, things were different, and I decided we needed to do more. We needed to explore every possibility, every chance that there is something we are overlooking. So now we are in the process of getting insurance approval to go see the specialist at Stanford. We are also in the process of trying to get Juniper fit for a daytime compression stocking, which is proving to be much more challenging than I thought it would be.
I am somewhat of an obsessive researcher, I think a lot of folks are now in the age of google. I don’t look up one lasagna recipe, I look up five and
overanalyze compare and contrast to see which one will be
best. I’ve tried to rein in this tendency
with the lymphedema stuff because, I guess, it feels like I’m grasping at
straws sometimes. Everyone else seems so
resigned that this is just how it is, that there is no rhyme or reason to it,
it just happened, and there’s nothing I can do about it. I realize there is nothing I can do to
magically repair her lymph system, but I feel like there is more going on here,
and I want to know as much about it as I can.
There were a couple of months where I just had to kind of ignore it for
awhile. We were in our routine, I think
we had kind of come to terms with it, so I just let it be. Then her hand started to swell, and I guess
it was a game-changer. I realized that
no one else was going to do anything to help us, so we had to help