We had the Run & Walk for PKD even this weekend and raised over $70,000 for research. I can’t tell you what it means to me to raise more money than a research grant requires. And almost as much as we have in 4 previous years for the event. There are no words.
I hope for rich blessings to the 80+ people that attended to help or participate who are connected to us. Family, friends, friends of family, teachers, therapists, classmates. How do you thank a group of people who just want to help out? They do more than help. They give me hope. All is right with the world for that moment in time when people come together to help a cause that is bigger than themselves.
We’ve been preparing ourselves that Gage would be beginning dialysis ever since our transplant evaluation day just about two weeks ago. This past Friday we had labs done and while I knew they would be high, I didn’t expect them to come in at 5.1 creatinine and 97 BUN. Call it Mommy Hope. Call it Parental Wish. I guess it’s appropriate that after the high of the event this weekend we’d learn the low of Gage’s next step in the progression of this disease – dialysis. The D word. Dr. Caring hopes that this week Gage will see a surgeon and have a catheter put in near the clavicle. Currently we’re not sure of the weekly schedule but it does take about 15 hours out of his life. That certianly is a low. My goal right now is to make the best of that situation and those 15 hours. I’m open for ideas.

We’re praying. If we can sit with let us know.
Steve
Yiiiiiiikes… I’m sorry.
The only advice I can offer: video games. Portable (well, some of them are), fun, sometimes educational, and nicely distracting.
Okay, books are also good. But sometimes video games are easier to concentrate on.
Hugs to all of you – may it all go as well as it can.
Might try a portable dvd player. Maybe art supplies. Board games like memory, sorry, where you could move the pieces for him. Could try having him write or dictate letters, like thank yous for birthday, etc.
wow – it is all happening so soon. So why not a dialysis playdate every so often? Might pass the time and Gage would probably like different company. Its good for his friends to understand what he goes through too – they could watch movies, listen to music, play games, etc. Might pass the time quicker and wouldn’t be bad for you either… will be praying for all of you.
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