Saturday, June 29, 2013


Just a quick note to say we are all ok and still at home.  Keegan's blood culture from the ER last Saturday (after the second chewing incident) grew back a type of strep that was rare enough that our transplant team hadn't ever heard of it.  Infectious Disease said it is normally found in the mouth.  Well, duh.  Since labs looked ok and he was clinically stable at home, they just ordered one more week of IV antibiotics (read 5 different IV medications now).  We are running the last dose of IV antifungal right now, so at least starting tomorrow we will be down to four.  Then if all goes well, down to the usual three by the end of next week.

On Monday, we attempted to let him carry his TPN around in his old rolling backpack (nicknamed Monkey for the stuffed monkey strapped to the front).  It went well until mid-afternoon, when he once again tried to put the curly tubing in his mouth.  ARGHH!  No break this time, but it was enough to realize that maybe the curly tubing needed to go away completely.  So now we are loading it into his old feeding pump backpack.  I hate that he has to carry it around on his back all day, but it gets the tubing out of his way altogether.  Maybe one day he'll learn to leave it alone.

Audrey had camp at her new school this week, and she loved it.  We had a little run in with the realities of a "real" school, rather than a Mother's Day Out program.  Audrey had a few reactions to hummus as a baby.  Her pediatrician told us she was allergic to sesame (tahini paste in hummus is ground sesame seeds), and we just avoided it with her since then.  So we list it as an allergy on every form from school, only to be told the night before the first day of camp that she will not be able to eat the school-provided snacks and will need benadryl and an epi-pen at school.  Well, it was a "kids in the kitchen" type week at school, where they were making their own snacks.  All sweets (which was another ball of wax for me altogether when there are so many healthy alternatives), none of which involved sesame.  This child has a sweet tooth, so we knew that telling her she couldn't eat the snack everyone else was having would not fly.  Nor had we ever been prescribed an epi-pen for her.  No one assumed her sensitivity was that severe.  At any rate, we worked it out.  She now has an epi-pen and an appointment next month with an allergist to fully explore any food allergies.  Not quite the foot we were looking to start out on with her new school, though!

She'll tell ya alright!
In her camp shirt one day before school.

My surgery went ok this week.  I am recovering a bit slower than I would have liked, but I'm getting there.  I have a follow-up appointment on Monday to learn if I will need another surgery based on the findings from this one.  Since it was abdominal surgery, I can't pick up the kids for at least another week.  Thankfully, they have been very understanding.  I am hoping for a nice quiet weekend with us all home together, and maybe by next week, we all will be feeling better!

Keegan put puppy in our bed Monday night after my surgery.
He told Gray that puppy had a hurt tummy and needed to rest.
I can't tell you how excited we were to see this level of understanding from Keegan!
This was such a HUGE step for him!

Lastly, I obviously did not get to the printer's to order our K's for Keegan tshirts this week, as I had hoped.  There's still time to let me know if you're interested.  The more I order, the lower the cost will be.  I plan on going Tuesday or Wednesday of next week.  Please comment below or email us at if you haven't done so yet.

Thank you, as always, for every prayer and well wish.  We are so grateful to have weathered this week at home.  We're hopeful for a calmer summer ahead!  

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