Latest UNM followup....plus a weekend of fun

Wednesday, May 1, 2013

Friday was another clinic visit at UNM.  Dillon was much more upbeat and positive.  In the past he would get so nervous about the needle poke that awaited him that he could not eat, drink, or take his pills.  He was able to do all of these things this morning.  He seems to be getting a handle on the mental aspect of the stress that goes with these appointments.  He keeps himself busy, preoccupied, physically active.

He was AMAZING with the blood draw.  He requested his favorite nurse....we had to wait a bit because she was busy, but Dillon informed the other nurse that he would be willing to wait all day.....he is so devoted to this woman, such trust and confidence he holds for her.  This nurse is a huge Celtics fan, so every time she sees Dillon they talk about basketball.  At the last appointment (back in March) this nurse joked with Dillon that he should write a report for her on a very famous Celtic player named Bill Russell.  She was kidding.....but Dillon came home, got books from the library, did some internet searches, and wrote a two page report.  He turned that in to her this time and her eyes filled with tears....she couldn't believe that he had actually taken the time to do this report.  Now HER assignment is to write a report for Dillon about the sympathetic nervous system.

This past weekend was fun fun fun.  Luca and Sean went camping for 2 nights up in Pecos (it was about 25 degrees overnight...BURRRRR).  Dillon, obviously, could not participate in a camp-out yet...so he stayed home with me and had a DOUBLE sleepover with his best buddy. 

Dillon's blood tests are all PERFECT, including his IGG level.  I cannot explain IGG (sorry) but what his results show is that he does not need his 4-hour infusion in Denver next week!!! YAHHOOO.  So the Denver trip has been postponed a couple of weeks.  As it stands, we will go on May 20 instead of May 6.  All of Dillon's symptoms are minor (the belly just causes trouble intermittently and we are finding it directly related to either being over-hungry or over-tired...both things we can manage if we pay attention and are always prepared with snacks and plenty of resting time). 

I have finally adjusted back to normal family life and I am taking advantage of my current work status...or lack thereof.  I am undertaking some painting projects around the house that I have not had the time to do over the past several years.  It is called "paint therapy" and it will do me a ton of good to have a project to focus on (other than the sweet boy who is underfoot :))