Day 81.......family activities

Sunday, December 9, 2012

We have been having such fun together that I forgot to post on the blog.  Sorry about that....I know that many of you check daily and have probably been waiting every day for an update......

Dillon's morning nausea is continuing but a bit less severe (meaning, he does not vomit every morning but he feels sorta cruddy every morning) but on occasion he is more nauseous and the morning medicines can be a huge challenge.  It could be his GVH rearing up after a decrease in his steroid, it could be a virus or bacteria of some sort (maybe the one Luca had), it could be his gut just adjusting to the healing process that is happening as the treatment for the GVH continues, it could be reflux that happens because his tummy is so empty in the morning after eating such small dinners.  Soooooo....we wait.  If it continues, we might go up on steroids and see if that helps.  If it worsens, we might have to get another endoscopy to check the progress of the healing of the GVH inside.  If it is a bug, then we have to monitor closely for fever and further signs of infection.  All the while his food intake is a major concern regardless of the cause of the nausea.  At this point, he is borderline on his weight as far as needing to implement some sort of intervention (like restarting the overnight TPN).  He is trying his best to eat as frequently as he can without upsetting the balance between nausea and hunger.  He is still on the overnight fluids that have a bit of dextrose in it to maintain his blood sugar levels and hydration overnight. 

At Luca's urging, Dillon has begun playing a little basketball outside.  Up until just a few days ago he did not even want to go outside and dribble the ball let alone play......so that is a huge deal for his spirits and his body.  Of course, he tries to play and play and play and I have to be the bad guy and make him stop before he works himself into a stupor.  It seems I am the big bad wolf on most fronts these days......"take your pills, drink your water, eat your food, do your mouth care, take more pills, moisturize your skin, take a shower, cut your nails, take more pills, go play, stop playing, get up so you have energy, sit down so you don't use all your energy....blah blah blah blah blah."  The kid never seems to get a break.  We are coming up with a check list so that he can be more responsible for what needs to be done and I can stop giving so many directives. 

We went to a motocross/dirt bike track yesterday and watched some people practicing.  It was cold and we had to walk up a big hill; Dillon managed just fine at a slow pace and Luca and our new friend, Fabian, ran.  There is a family here who has a 2-year-old in treatment and she has an older brother who is Dillon's age.  Poor kid is bored because his mom is really involved in the baby's care, so we have sort of adopted him and have included him in some of our activities.  He is very sweet and well mannered; his personality is very similar to Luca's so there is a lot of energy and laughing.

On friday night we went to the outside ice skating ring that Luca and I went to a couple of weeks ago.  Sean and Luca skated and Dillon and I watched from underneath one of those outdoor heater things.  It was fun and beautiful.  A cold, crisp evening with lots of lights and music coming from overhead speakers.

Today I got my birthday massage (a joint gift from Brent's Place and my dad....THANK YOU DAD AND ALLAN).  It was relaxing and I enjoyed it, although the place was very fancy and I felt a bit out of my element.  When I got back the boys had cleaned the apartment, made a homemade pumpkin pie (THANK YOU MOM for the pumpkin and the spices), and then we put together our new little tree in a box.  We are not allowed to have any live or cut plants, flowers, or trees so we broke down and bought a 4-foot tree at Target.  We just could not bear to have Christmas here in Denver with no tree.  It is really cute and the boys had a blast decorating it with the smell of the baking pie and the Christmas carols playing........just like they do at home.  We bought ornaments but Sean is going to bring up our box of personal ornaments on the 22nd when he comes back next time, so then it will be even more special.  We have an ornament for every year since the kids were born.  We are going to go out for pizza tonight at a place that Sean and I have been to in our past lives (pre kids) when we lived in Colorado Springs.  We wanted to do the zoo lights or the botanical garden lights but it is only 20 degrees and Dillon's system just cannot tolerate being too cold for too long.  We might go to the zoo during the day just to visit the animals and skip the nighttime light part.  On Tuesday Luca is going to play hockey with the director of Brent's Place and on Wednesday we are going to the Hammond's candy cane factory tour. 

Dillon and Luca in front of our little tree

Oh yeah.... the other day one of the Brent's employees told Dillon he had a surprise for him.   He showed up with the cake that is pictured below.  Apparently a culinary school was having "cake decorating day" and they donated a bunch of practice cakes to Brent's and one of them happened to be Celtics.  They immediately thought of Dillon and gave it to us.  Turns out that class needs to work on their cake baking skills a bit.......although the decorations were obviously super cool   :)))

Paul Pierce jersey, one of Dillon's favorite players

Tomorrow Sean is leaving.....Luca is staying.  We have clinic at 11 a.m. with blood work and an evaluation of this darn tummy.  He has still not needed platelets or red blood cells since his original discharge from the hospital on day 35, which I think is FANTASTIC AND AMAZING.