Battles against terminal illness, anxiety, and life!

Butterfly

I have a butterfly in a world of moths. Sure, I expect many would believe I should think of things in a reverse sort of way as in my son is a moth in a world of butterflies. I think not. You see, he is beautiful. He stands out against the crowd. Sure, it is for reasons some may deem less than ideal. However, that uniqueness makes him even more cherished. Being strong, charismatic, and resilient in spite of those differences makes him…Oh, I don’t know the right word. Just…more.

We have had to test our mettle a bit more than in the past lately. We will soon start SCIG treatments to help bolster his immune system. We are replacing his little dagger with a big ‘ol sword! We are hoping this will reduce the number and intensity of his illnesses from here on out. This will involve sub cutaneous infusions for an hour or so weekly. Braden is angry with us about this, but it is just an “is.” We start in about a week or two.

Lately, Mr. Braden has been rather emotional about all the changes happening in his body. We have noticed another “new normal” has been reached. Climbing up and down ladders is becoming truly difficult and navigating his environment requires him to find something solid to hold on to more and more. These are just outward signs of his deteriorating cerebellum. That’s the balance center of your brain. His wheelchair is due to arrive around Christmas. Then we will start his driving lessons! My toes are a bit concerned as they will certainly be broken should he run them over!

We are in the lengthy fight to get a night time monitor with an alarm for when his oxygen saturation levels fall. If we aren’t aware and he get a mucous plug, that could lead to prolonged periods of low oxygen. This could cause organ and brain damage. This is 100% not acceptable. So, Blue Cross Blue Shield, let’s get over ourselves and do what needs to be done, ok? This Mama Bear doesn’t wish to show her claws.

We are desperately trying to complete Braden’s room. We need folks to hang sheetrock, put down flooring, and so much more. If you have a talent or know someone who does, please send them our way. We would greatly appreciate it. We are holding our breath and hoping to not run out of money and that situation will  only be worse if we have to hire folks. The clock is ticking for us. We are running out of room to store medical equipment.  

Well, off to run children in their respective directions. Until next time, hug those you love!

Becky

*No time to proofread! Sorry!

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