Transformation

It has been a couple of days since we have been able to post anything because we are running two busy "households" right now.  On the Fort Collins end, Tim and my dear mother, who has been caring for the children since the day after surgery, have been "holding down the fort."  Besides handling all the regular stuff of life, like school work, piano practice, packing lunches and entertaining kids, they've dealt with all sorts of other issues.  Sarah, Whitney and Spencer have all gone through a cycle of "foot, hand, and mouth disease," which left large blisters in their mouths, fever, runny nose, fatigue, rashes and blisters on their bodies, and irritability, I underline that for emphasis.  Sarah also came down with the flu yesterday and puked in the nurse's office at school.  Spencer has other various medical needs like an ingrown toenail and gashes on his face.  Life never seems to slow down.

Mikey has made some huge strides this week.  He's started playing with toys, transitioned to bottle feeds and pulled out his feeding tube again (they left it out this time), ate pears, spiked fevers and recovered, and giggled.  He is gaining weight and likes to grunt and play games.  Although his right eye isn't quite yet in sync with his left, don't you think he looks amazing?  Miraculous in some ways.  Yes, he still has a tube sticking out of his head, and he has trouble with motor skills like turning his head, rolling and sitting, but every day he is a little bit better.

Monday he will get a mediport (kind of like a semi-permanent IV under the skin) and most likely, a shunt.  They are giving him one last try to prove he needs a shunt but surgery is scheduled on Monday as they still anticipate it.

I've also had some very lovely visitors this week.  Some dear friends have made visits during the days and nights and my sister-in-law drove up from Pueblo to visit us.  We never know if we should smile or not when we pose next to Michael.  Does it look strange to have cheesy grins next to a baby with cancer? Ah, but you got to love him.

We have had several challenges arise from miscommunications within our "care team" and I have been on a roller coaster all week dealing with conflicting information and opinions.  For example, some of the team strongly encourage me continue nursing Michael, others strongly encourage weening him.  Some say his Bell's Palsy is improving, others say it's getting worse.  Even the same person will one minute say one thing ("He's eating from a bottle so well!  Let's continue doing it.) and five minutes later come back in the room saying something different (I've changed my mind, he's doing terrible with his feedings and needs to be on a feeding tube again).  This wouldn't be that big of a deal except all of these people write it out as "doctor's orders" so I'm constantly having to do whatever the next person who walks in the door says.  And of course they blow off my opinion if they don't agree with it.  I'm learning that having a child as a cancer patient requires efforts in building a maintaining good relationships with his care team.  So far, there have been some hiccups but we are hoping to iron them out with a "family meeting" on Monday where all of the people involved in his care - doctors, nurses, therapists, nutritionist and social workers, will get together and develop some firm plans and concrete information. 

Tim and I are trading places for the weekend.  We'll see what progress Mikey has made by then.