Wednesday, August 10, 2016


Five is the number of months it has been since I wrote a blog, and it is also the number of blogs I have written in the last calendar year. Apparently blogging has fallen significantly farther down on my priority list, but I know there are a significant number of people who check in on Brayden via this blog so I'll try to work harder at keeping it more up to date!
The last five months have been jam packed! In no specific order......
Brayden was made an honorary firefighter in Lees Summit. The police and fire department set up a whole morning and he even got to put out a real fire!
Spent some time cheering on our boys in blue!
Spent some time on the water with pawpaw!
Became a big brother again!
Had another brain surgery!
Got to go to Disneyworld on his wish trip!
Got a terrible rash from one of his new medications (which was subsequently stopped)
But most importantly we are spending very little time here.......
Overall Brayden is doing better than anyone probably could have expected. Five months ago I was beginning to think that our time with my sweet boy might be coming to a close, but since then we have had 3 stable MRI's.  He only has to go to the clinic once a month, and he has started taking his oral medication regimen twice a day without too much arguing.  At the beginning of this cycle his liver enzymes were a tiny bit elevated, so if they continue to go up that could be a problem, but time will tell. We are settling into a good routine at home and Brayden has started helping a little bit with his sisters when he isn't being too stubborn. Its hard to believe he is getting ready to start his last year at early childhood and that in one short year he could be heading off to kindergarten! All in all things are pretty sweet at our house!


  1. Aww brayden you are so cute!! Krep fighting little man xx best wishes xx

  2. it is certainly scary is that the child should experience. but I hope you all will be well

  3. so good boy, God bless him! thanks for sharing these good news!

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