back to our (new) schedule

I realize now how long it’s been since I have given any updates on Hank, our family, and what’s been going on.  We surely have been busy as usual, but a new kind of busy and new kind of schedule to get used to.

Here is some regular stuff (which are my favorites). 

Grocery shopping (and apples)!

Crazy pop art pillows of the boys we got for Steve for father’s day (early).  These have been so so fun!

Sleeping pictures are a regular (and favorite) for me.  Yay for our own beds!

Friends and puppies! 

Outside play on spring days!  This is one of Hank’s first experiences with grass. 

This boy regularly keeps us on our toes and is too much fun!

Now our (new) regular. 

Hank’s meds.  As you can see most are twice daily.  We have easy days and bad days with these babies.  He has definitely learned how to spit them out.  More than a handful of times he has gagged himself on them and thrown up his entire dinner. Such a struggle, but a necessity.  There are so many times I wish I could give them all in a shot so we can be sure he gets everything he needs.  The side effects of the medications have mostly been positive and they seem to be doing what they are supposed to.  

Heart failure clinic every 2 weeks.  The last two appointments have been good.  Hank has been a champ and his blood work has come back excellent.  His heart function has shown not too much change but since it takes months to know if the bivent pacer worked, we are just waiting patiently.   Drew has been such a champ dealing with Hank’s appointments.  When Grandma Suzie comes along, she takes him to the zoo. 

Summer cabin trips.  Since Steve is out of school we are now onto our summer trips to Montana.  Hank has shown to tolerate the trips fine since he has been out of the hospital.  It’s nice to add that back to our schedule. 

Tee ball and snow cones.  What would a summer schedule be without these? 

     

Our next challenge.  Since Hank has his new cardiomyopathy diagnosis we have learned there are some challenges that go along with this.  A major challenge is adequate calorie intake.  The poor kid is a little stick figure and hardly eats anything.  We are working with a dietician to see how we can get his appetite to come back.  There has been talk regarding tube feedings if he doesn’t pick it up a bit.  We are working hard on this and hope that his next appointment he will be up some pounds and not down like last time.  Crossing our fingers and toes…