Benson and Claire were born with a rare genetic disease in which their liver produces too much oxalate--called primary hyperoxaluria. Claire's condition has progressed much faster than Benson's. She was on dialysis since she was 3 months old and for much of that time, did dialysis 3 hours a day, 6 days a week. She receive a much needed kidney / liver transplant on December 18, 2009. It is expected Benson will eventually need similar transplants.


Wednesday, June 18, 2014

back to MN

Last week we spend the week where we called home just a year ago in Rochester, MN.  It was a great week filled with many joyful reunions with friends, neighbors, physicians, and nurses!  The kids were so glad to be there and had many friends to reconnect with.  Claire wishes we still lived there.  She's already planning her next birthday party in MN at the house of bounce with all her fabulous friends.  The kids traveled great…thanks to the invention of anything with a electronic screen AND gas station drinks and treats!  We were glad to have my dad come along with us so Jared could stay home and work.  Grandpas make things much more fun too than just boring old mom.  

Things with the dr. appointments went well.  Benson's condition is stable and he is doing great at keeping his kidneys hydrated.  He had well over 4 liters of urine in his 24 hr. collection which is pretty amazing.  We were glad to hear of his good health report and hope it keeps up!  Claire is also doing well.  There's still some things were working to figure out about her kidney and what to do about the reflux.  Still no definite answers or conclusions about what's causing her kidney to be irritated but those conversations are still in the works.  Overall, she feels well…so that makes all the difference!!  It was so great to see our physicians and nurses.  They do so much for us and we're just grateful to be associated with such a great physicality.  

And of course we had a little fun while we were there too!  We went to Oxbow Zoo, a few different parks, Trader Joe's (a personal favorite), the downtown street fair, and the Water Park of America in Minneapolis.  We hadn't been there before but it was certainly worth it for all of us!  There was something for everyone to enjoy at this huge indoor water park and we loved spending the day there.  It was a nice reprieve from everything else.  

On the drive home, we stopped at a Western Trails Museum in NE that had some great info about the pioneers who came across the country.  The kids loved seeing things that existed "back then" like old telephones, water pumps, and even a stethoscope.  A nice education experience smashed between two longs days in our car.  Helped us all remember how much ease we have in traveling "these days" rather than how they had to get along "back then."










3 comments:

~adelle said...

What a road trip! I was seriously talking to my neighbor about that water park like two days ago. She is from Minnesota! I bet it was fun. Glad to hear the kids are doing so well medically. Looks like you are doing a great job as their Nurse Mama!!

Peggy said...

Great road trip. Since we have not heard from you since June everybody is doing great!

Unknown said...

Hope to hear from you all soon, really miss your blog.