Day +6

Tuesday, September 25, 2012

A quick note just so you are not left wondering....

Dillon is holding steady with symptoms.  Much much less nausea (not quite non-existent but completely tolerable).  Still not eating (which is to be expected...they say most kids don't eat for over a month, thus the IV nutrition). 

The main issue right now is still the incredible pain running from the tip of his tongue down into his esophagus.  They are very liberal with the pain medications and want him to be as comfortable as possible.  Of course, this means he is foggy and groggy.  He sleeps quite a bit during the day and usually rests well at night also.  Last night, for example, he was asleep by 10:30 (we stayed up late watching a football game as he had slept for a few hours in the late afternoon) and he got up once at 4 a.m. to pee and to get an extra dose of pain meds.  Then he wakes at about 7:30 in the morning.

On the schooling front, he is obviously lacking the energy or clarity of thinking to do much.....but our main activity right now is reading. I read to him out-loud and we discuss vocabulary and such (the book is too heavy for him to hold, his arms get tired very quickly).  We are doing crossword puzzles (which we do together but he also picks that up and will do that independently).  He is doing more crosswords than he is playing video games or listening to his MP3 player...a testament to his love of words (on his neuropsych testing he scored well into the high school level for reading and vocabulary) and also to his upbringing and education without an emphasis on media.  Even though the games are new and exciting, it is not engrained in his mind and he prefers to do other things most of the time.

I miss my family terribly now that it has been 2 full weeks since they left.  My Luca and I are reading bedtime stories either via Skype or over the phone so that helps us feel connected.  Sean and I chat on the phone pretty much every day....however, I am lonesome for their laughs, their smiles, their hugs.  I realize how much my parents are entwined in the lives of our little family.  It is such a blessing and a gift for all of us to have the closeness that we do, both in proximity and in emotions, support, and just day-to-day living.

Well, off I go to tackle this day....day +6.