Wow.  It has been a week for summer.  This mama has been flexible with schedule and revamped things around a lot these last several days, so Kiran and I could have some really great experiences.  My latest mantra: “This is our life.”  Best I can explain – The motto helps me let go.  Kiran has to have solid structure in his days, especially around his feeding schedule, because he is tube fed.  But.  I can get creative, we can feed on the go (and we do this, lots)…and sometimes, as long as he does okay, I can go a little longer in between or push meals a little closer together, so we can live. our. life.

We have been doing a lot of breakfasts on the deck.  The mornings have been so nice and cool and lovely these past few days.  We tried out a splash park for the first time.  Kiran and I got in our friends’ pool for his first swimming experience of the summer last night.  It was five minutes (it was cold) but we swam!  We have had family dinners and the Help-A-Heart picnic.  He experienced Taste of Hope, his first time sitting in his wheelchair at church (and he paid more attention to what was happening in the service), and fireworks!  He really saw the fireworks this year, and the noise didn’t bother him.

Mostly, it has just been an exhausting, on-the-go, fun, exciting week.  We have done so much and really enjoyed summer.  I think I realized how quickly it was passing us by, and there are so many things I want to experience with him…so I just started making it happen, rather than waiting for the perfect time/day.  With him, it will always take a little more work, a little revamping, some creativity, a lot of energy.  But man, it’s so worth it.

I am dreading Wednesday.  Kiran’s big appointment day in Iowa City.  We will see endocrinology, have an echo, see cardiology, and see his orthopedic surgeon.  I don’t just dread the hospital day – they are always long and exhausting – but I am anxious for the cardiology appointment.  He is giving no indications that anything has changed, but when you go six months between appointments, it gets a little nerve-racking.

Look for an update Wednesday evening, where I will also outline his many upcoming appointments.  We will be Iowa City bound 8 times in the next 6 months.

So.  Today, we keep enjoying summer.  Two more July days!


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