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All the feels tonight

Updated: Nov 1, 2022

A question I ask myself at least 10 times a day. Between the massaging, the toe cap trims, and the wraps I have noticed myself second guessing EVERYTHING. I still feel like I don’t know enough to already be 3 months into this. Of course I don’t expect myself to have the PH degree knowledge or webMD terminology memorized, but I did expect myself to be a bit more confident in my decision making and techniques. I feel like we should be closer to a maintance stage.

I keep telling myself that it will get better and it will get easier, and the logical side of me knows this but the emotional side of me sees nothing but daunting and uncertainty ahead.


Our CLT has told me that with garments as options, things will be easier and I do trust her but there is still that emotional crazy mom side of me that wonders, how is that possible when getting to garment stage is hard. Cause lets face it, ITS NOT easy. There is no magic pill, no procedure to handle this. It is taking physical action to the body to help control the disease. It is specific and precise techniques that must be done. Missing ONE just one sets you back tremendously, from our experience. I will say, staying compliant has been easy but we have had to miss massages because of sickness or because there just wasn’t time. In our reduction stage we do 3 massages a day. We haven’t missed all 3 except for when she was sick but we have had two days where only one massage was done. Sometimes life happens and when it does you have to pay close attention so you are aware and know how to adjust your time for the next “unexpected” life thing that will enviably happen.


I have found myself diving into anything and everything I can find to educate myself more on this disease as well as MLD and compressions. I do wish someone would offer a actual detailed course of CLT to parents and caregivers. I could see where that would be SO beneficial in the care and advocating in the dr office.

 
 

Her fight is my fight. I want to leave this world knowing that my little is not lost in the cracks of medical uncertainties and inadequate care or lack of.

Everything I do or seek to do is to make her world a better place, her rise to be a strong and conquering one. I refuse to let her disease control her. I refuse to let herself let the disease rule her.


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