Welcome to Coleson's blog. We've created it to keep friends and family updated on the journey we are about to embark on.. We appreciate your support and words of hope and encouragement during this time when it matters most.

Sunday, July 14, 2013

T-10 Checked in to our new pad!

Today we checked into our new place - Room 4138.  We decked it out with his Coleson banner and his UmiZoomi stickers to make it more "homey".  I also have my "good day" button and my "30 Days of Inspirations" cards sitting next to my couch/bed.  Thanks to everyone who has been so thoughtful to give these items to us.
Over the past 4 days we've been to neuropsych to determine that he is still testing at the average level for his age for the most part. He has progressed in his gross motor skills but is still testing a little low for the responsive communication (things like "go get the ball" or "please bring me the ball").  At his ophthalmology appt. we learned he is nearsighted and astigmatisms with some cornea clouding and retina damage so he will need glasses.  I really wasn't prepared to hear that since he "seems" to see fine.  But this disease hides out in every inch of the body so I guess I shouldn't be too surprised.  I'm thankful his heart and lungs are so strong.
Friday he had surgery again to replace his central line.  Wayne and Jim (colleagues from HW) stopped by to spend time with us while he was in surgery and we learned a lot about the U of M campus and Minneapolis in general. 
Saturday he woke up full of energy and also missing one of his line caps!  It must not have been tightened enough coming out of surgery (as there is no way he can get it off himself).  We were fortunate the line was clamped (and those clamps don't always stay shut) as he could have bled out and I don't know if I would have woken up in the middle of the night to realize it.  Lesson learned...double check the Dr.s and Nurses work!
Janna (another colleague) and her husband Steve came over and brought us some dinners and a "Cars" book for Coleson and stayed for lunch put on by one of the many organizations that donate their time to feed us.  Watch out Honeyweller's, Janna got inspired while she was at the RMH!
Then we got an unexpected (but welcomed) visit from Cary (another colleague) Saturday afternoon.  We spoke about the "Minneapolis" stats like the 2nd most congested city and the 2nd most "fit" city.  I failed to tell him I also learned it was also rated the 4th most "Snobbiest" city behind Boston, San Fran and Seattle.  I'm surprised by this last stat as we've only met friendly people here.  Although it is mostly Dr.s and Nurses!  We so appreciated our visits over the weekend, it definitely helps to know we have friends nearby.
After Cary left we toured the surrounding area and on a recommendation from Janna & Steve, we drove through Como Park.  What an amazing park! It has an amusement park, zoo, lake, pool, etc.   We didn't get out as there were a lot of people there and with Coleson's compromised immune system, we didn't want to risk it.  We definitely will take Peyton there when she gets here. 
Today he was full of energy again, unfortunately we spent much of the day in the hospital.  They just started his antibiotics, antifungal meds and will start his "IV Flush" at 10:00pm.  We start Chemo #2 (Cytoxin) tomorrow which can form crystals in the bladder so they have to pump him full of fluids over the next 5 days and we have to change his diaper every 2 hrs. to ensure he is peeing it out. 
Peyton has been having so much fun at Aunt Em's house.  She's gone to the pool, Lake Michigan, Aunt Nik's house, McDonald's etc.  She is having fun sleeping over and from what I hear Lincoln's bunk beds are full of all the kids.. and Aunt Em.  I'm afraid she will disappointed to come her next week.  Although she does get "Sleepy" when we Skype with her which I think is code word for "I miss you and I'm sad that Coleson's owies aren't all gone yet."