Wow, where have we been?

I am just realizing how long it has been since I last posted an update.  Shame on me.

It’s been an interesting couple of months around the Hawkins household.  School is busy, and life is busy.  We had a string of 5 hospital visits between Wendy and I in less than two months, but the boys have been doing well.  Wendy and I are OK, kidney stones(me), gallbladder surgery(Wendy) and a couple other visits.

Brandon and Jeremy are both hanging in there.  We have definitely noticed that both boys have lost more vision, as both have been bumping into things around the house that they weren’t bumping into a few months ago.   Jeremy’s stutter seems to come and go, it got better for a while but now in the last few days it is back.  Jeremy has given his after school caregiver and Wendy fits with his moodiness and behavioral outbursts, but he hasn’t shown much of these issues at school yet.   Brandon has continued to spend alot of time creating imaginary “battles” with Beyblades and sometimes Pokemon.  He uses a wheelchair at school and on longer outings outside of school just because he gets tired easily.

Both boys are excited for Halloween Monday night, Brandon will be Mario(of Mario Bros fame) and Jeremy will be “Cobra Ninja” which ought to be fun.

Leaving you for tonight with a couple of recent pictures.  We will do separate posts for a couple of special events in the last couple of months.  We made it up to Camp New Hope for a much overdo visit in September and we also attended our second Ready Set Hike event at UNCC.  Many pictures and much fun to share.  Also be on the lookout for some upcoming fundraising events, more details to follow soon…..

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About

I am married to Wendy and dad to two boys Brandon and Jeremy with Juvenile Batten Disease, a fatal neurodegenerative childhood disorder. I am also active with the Batten Disease Support and Research Association.

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