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Holes in the boat...

I am sure that there are many people out there that feel like they are sinking or at least feel like they are constantly busy shoveling water out of a sinking boat, only to find new holes...

That's how this past week in Dallas was for me. Just complete, non-stop water throwing.

My last blog I started my update with the lymph-press pump. This blog I will start with the latest of events and then go back and fill in the middle.

As I mentioned before, January we did not have PT due to sickness and the therapist schedule not lining up, that was OK. Honestly, I wasn't worried. Of course we didn't have significant loss in her reduction but frankly we haven't had HUGE losses since October if I am completely honest. Everything in-between has been a CM or a 1/2CM difference. Nothing to write home about, right? Don't get me wrong that sucks, but the reality is, there is nothing more we can do about that. Our job is to make sure it doesn't grow!

It was about 3 weeks ago I had noticed Jos butt cheek was looking a little fuller than normal and of course I was concerned but it wasn't HUGE it was just enough to notice. I kept an eye on it and in a matter of days it seemed like it went back to normal. I genuinely couldn't see the difference any longer. Huge sigh of relief happened at this point.

Fast forward to this past week, her therapist asked me how things have been going, anything out of the ordinary, etc. We talked about the pump, her Velcros (pain in the butt) and just how her foot is always so stubborn and so quick to just swell up as soon as she comes out of compressions for bath or a breather. Then I told her about her butt. What I noticed and then after awhile it seemed it went back to normal. She just nodded and said that she would pay attention during the massage but nothing drastic towards Jo. She is extremely mindful and respectful in regards to Jo feeling comfortable and respecting her personal space. So she chose to observe those first few days.

Thursday came around and she looked at me and said, "we are going to measure Jo today around her hips, buttocks and pelvis area." She gave me this look and with that look I knew what it meant. I knew she was going to tell me that this stupid disease is now in her pelvis. After her examination and measurements. It was VERY clear that this has in fact either moved to her pelvis or her pelvis is just now showing the signs of "damaged or blocked" lymphatic vessels. NEW HOLE IN THE BOAT

Then defeat. complete defeat washed over me. Jos whole life has been turned upside down for the last 6-7 months since diagnose, I have studied, practiced, changed everything in our life to make sure we are doing EVERYTHING right to prevent this from getting out of hand, to keep this from getting worse. Now, this lady is sitting across from me telling me we have a new part of the body "involved".

I know she saw everything I was thinking and feeling written in my face because she immediately told me that we have no idea if it was involved this whole time, and its just now showing itself and that could very well be what it is. That none of this is from lack of care or doing it wrong. It's literally what happens sometimes with this disease.

At this point she's is pushing for Boston Children's for better care. She has been talking about it for awhile now but this past week she was really pushing it. Certain that we would have better options, better Drs. not that the Drs. here aren't good but they do not handle this kind of stuff everyday, its like a side gig to them. Up north, it's what they do EVERY SINGLE day. Obviously, I told her to make it happen. I will go where ever Jo needs to go to get the best care. NEW HOLE

So, we ended the week better than Thursday in regards to therapy. We had an appointment set up with our garment fitter so we could get these new garments ordered. After a good nights sleep. I was ready to tackle all this head on.When we arrived, Our fitter stopped me at the front and said, "sooo I ran your insurance and you know new year, new deductibles..." Of course I wasn't thinking of that big number I was just like yeah, ok its fine. We can't not do this order.. she preceded to tell me how much the compression hose would be with the crotch/underwear style $1400. Plus we would need the night garment underwear style which is another $1300 and after insurance our out of pocket would be $1600 and they have to have that up front. these garments are custom made, of course they aren't cheap.. but HOLY COW. I felt my face turn bright red, water filled my eyes. For the first time during all of this I was having to tell someone "I CANT RIGHT NOW" in regards to Jos care. SIX HOLES WERE ADDED TO OUR BOAT in that moment. Also all the figures of the past month of medical we are having to pay. $1000 on pump, $1200 on genetic, plus all the medical bills at home pilling up... Talk about a momma who literally can no longer figure anything OUT in a pinch!


She gave me a measuring paper and a measuring tape and told me to face time her when we can make the order and she will walk me through measuring so we would not have to make a trip to Dallas just for that. I smelled at her, grabbed Jos hand and walked away.

All I could think about is the added amounts that I still have to add to these expenses because her bandages we are on the last of them and need to replenish.

I remember laughing at that thought because honestly, what else was I suppose to do. Jo was right beside me and the last thing I needed her to see was that something with her disease is causing heartache. So, I laughed. From there we headed straight out of Dallas. Know that I had a job to do. PATCHING HOLES before we really SINK.

I decided, it will all work out. God never or has never let me or my children go without when something was needed. I might not see that rescue boat at this moment and I might cry out, but my faith knows there is ONE.

As I sit on this boat, shoveling out the water, finding patches for these holes. I will faithfully wait and rejoice in my sinking boat.


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