Another week in the books!

Well Royce did NOT tolerate having his dialysis run times dropped down to 3 hours.  His first shortened run was on Thursday January 23rd.  By the morning of Tuesday the 28th, he was crabby and not wanting to go to school.  This was my first clue that after only three shortened sessions, equaling 90 minutes less of dialysis, Royce was not feeling well.  In order to make sure his bad day wasn’t just a fluke and was actually related to the decreased dialysis time, I observed him for another week.  On Tuesday February 4th, I had to tell Dr. Tran that we needed to increase his dialysis run time back up to 3 ½ hours.  Royce’s appetite had dramatically dropped, to the point that he wasn’t eating his lunch at school and wasn’t interested in drinking his formula milk.  I can already see him feeling better and he is back to eating and drinking.  Now, the eating lunch at school is still a struggle but not because he isn’t feeling well.  Royce doesn’t want to eat the food I send in his lunchbox.  He has refused to eat rice and onions, the sticky rice from the Chinese restaurant, the sticky pork rice from the Asian food store, and even pizza!!!  Right now the only food he is interested in eating is toasted buttered buns and bread sticks.  Ugh…I continue to say that one of the hardest parts of this journey is feeding Royce.  Between the diet restrictions (low sodium, low phosphorus, and low potassium) and his cultural food preferences, the list of foods he can and actually wants to eat is very short.

In the afternoon on Tuesday the 11^th, I had the privilege of being the Mystery Reader for Royce’s classroom.  They have been having various guests come and read books during the month of February.  On Monday night, Royce and I were reading one of his solar system books and when we were done he told me that I should come to school to read that book.  He made sure I saw him put the book into his backpack.  So of course, I read the solar system book and one his Splat the Cat books to the class.  After I was done reading, Mrs. Carlson and the students presented Royce with a large gift bag FULL of goodies!  There were a couple Lego sets, activity/coloring books, a magna-doodle, and Royce’s favorite item a solar system mobile!!! We took the entire bag to dialysis so that he has a variety of new activities there. Thank you a million times to all of Royce’s classmates and Mrs. Carlson for the wonderful surprise!!!

Royce has had a full time American Sign Language interpreter with him at school for a couple of months now. After reading to the class, I had a chance to sit with Royce and his interpreter Misty.  Royce had been signing things to me for a good week and I had no clue what he was actually saying.  Turns out he was signing the names of the planets and other solar system terms! I don’t know all of the planets names in sign yet but I am slowly learning.  Misty said that when the class has free play in the afternoon, Royce would rather sit with her and learn new signs than play with toys.  He has an incredible thirst for knowledge!!! Outside of school I am Royce’s interpreter but even I don’t always understand everything he says or signs to me.  It was interesting being in his classroom and having Misty be the one interpreting for me.  It was a role reversal I haven’t experienced with Royce yet.

This week volunteers from Make-A-Wish visited Royce and I at dialysis.  Royce qualifies for a Make-A-Wish but I told them that there is NO WAY we can do anything until after he gets a new kidney.  They really want the child’s wish to be their idea and not the parents.  So I told them how Royce keeps asking if we are going to fly to Lego Land, on July 4^th, when the new location opens in New York.  And how Royce always gets my attention to watch commercials about cruises because he thinks the BIG boat is awesome.  I know Royce would love to travel back to China to see his “Grandma” (we refer to his foster mom as Grandma because she is of that age). I also told them that if the wish involved rides that he needs to grow more before the trip.  Royce likes adventure and is NOT interested in riding the “baby” rides. No matter what Royce’s wish ends up being he will be so excited!

Well it is finally Friday again.  I hope everyone had a great week and stays warm this weekend!!