I believe my last post was in November. It was not my intentions of dropping off the face of the earth, but it’s pretty much what happened it feels like. We skated through the holidays fairly well. We did have a lot of sickness but nothing like the year past. We did our December therapy in Dallas and that went well, so well that we even ended up with a lymphie pump. At the time we tried it in office it seemed like it was going to be a miracle worker for sure! If I remember correctly in was the end of December that we recieved it. Not only that, the genetic drs office called and had an opening for us in January, so we were totally stoked that opened up and no longer had to wait for April to come around!
The new year hit and we seemed to have had a revolving door of all the crud that circulated in the schools and public. We ended up missing the whole month of January for PT treatment. Although I didn’t like, I knew i had enough tools at home to keep up the work and make sure her swelling was maintained. Here we are in February and we literally just returned from Dallas yesterday, so many things to talk about. So many updates and now as I sit here I struggle on where to start...maybe I should just start with when we received the pump.…
Lymphie Pump- excellent equipment to have as a tool but certainly not for replacing your MLD. Let me just say, it is so easy to fall off the wagon and say, “just get on the pump today” I highly recommend not to take that route. I caught myself for a good two weeks using that pump more than I was doing the MLD. Its purpose is to be used for days that are chaotic, and i mean truly chaotic. Not when your mind is. DO NOT fall down that rabbit hole.
After using it for a whole month I realized that the results are not as grand as they were when we used it during therapy that first time. I’m now convinced that my setup is not right and am waiting for a rep to come out to go over it with me. For the price tag, I really do expect better results than what we are getting at the moment. Because of that, I am sure it is operator error. Customer service is EXCELLENT! They really are “johnny on the spot” so I have no complaints there at all. The machine cost $4,000 and our insurance paid all of that except $1,000. Which is still a blow to the pocket book, especially right after Christmas. Thankfully this company allows payment plans and we were able to get that setup.
We think maybe the leg sleeve could possibly be the wrong size (too big) as to why the results are not as favorable. Like I said, they were Johnny on the spot and sent out new sleeves and until we get it right that is what they will do. No charge and no payments until we are totally set up correctly. I realize there are many brands out there but so far, I feel they have really been jumping hurdles to make sure everything is just right for our little Jo. So I’m thankful and I am patient and do not mind these hiccups. Once the rep comes out and we try again I will write an update on this.
I will close this blog with the Lymphie Press and will continue a new one for the other detailed updates from the past couple of months.
The lymphie life is truly a hard one. For the person living with it and for the caregivers helping with it. It is no easy task and literally EVERYTHING must change in order to be successful. My heart is with all that face this alone, emotionally, physically, and financially...