The year so far...

This has been a long year for Jackson.  I would think at 11, new diagnoses would be less and less. However, he has been diagnosed with epilepsy, dysgenesis of the corpus callosum, pituitary hypoplasia, growth hormone deficiency, hypothyroid, allergies to pretty much all nuts (it used to just be peanuts and milk).  All of this since February. We've added two new daily meds, with the potential of daily growth hormone injections, pending insurance approval.  He had 11 teeth pulled, 8 baby, the rest adult tooth buds.  The baby teeth weren't coming out on their own, and the surgeon determined they were fused to the jaw bone.  Three ED visits for croup and various other illnesses.  Whew.

And, somehow, he's relatively unaffected by everything.  All that matters to him his the iPad, Alphabits, music, Legos and the new shoes he got yesterday.

Object du Jour: iPad, I can hear him in the other room asking Siri to show him a picture of Curious George at summer school.

Song Du Jour:  Radio, Radio by Elvis Costello

Done?

I went to the pharmacy at the hospital yesterday to pick up Jackson's prescriptions (only two of the three were ready and I have to go back again today, I hate that parking ramp!)  Anyway, the lady in front of me was talking to the pharmacist saying, "We're done!  He rang the bell today and we're finally done!"  I just stood there thinking, I wonder what that's like to ring a bell and be "done."  It made me remember that this life with Jackson is forever, we won't ever be "done."

The times that I've volunteered for hospital committees and to talk about my experiences as a parent with a child with special needs, I've realized that the hospital often wants to share stories with the public like the one above - This bad thing happened, we fixed him right up and sent him on his way.  All done.  Its all about the outcome. Our story is that we will be at Children's until he's ready to transition to adult care and we will have another beginning, but never be "done."  (I'm not saying that we haven't gotten great care, but there's not a whole lot of interest in saying, we've got these families that have been coming here sometimes a few times a month for 18 years and there's no "done" in sight.  That doesn't sell a lot of papers, if ya know what I mean.)

I wouldn't change things (maybe I would to make life easier for Jackson, but not for myself), but it's been a long 11 years with no "done" in sight.  And all told, he's still a pretty cool kid.

Object du Jour:  The box from the Minecraft Lego set.  The box is way more fun than the actual Legos.

Song du Jour:  A new feature here on J's blog.  He falls in love with a song and we listen to it until I can't take it anymore and he moves on two a new one.  Right now it's "Jungle Love" by the Steve Miller Band.

#endscene