What's Going on Around Here

Not a whole lot going on around here, thus the lack of posts.  When I look back at old blog entries, I sure had a lot to share when I first started writing.  Now, it's just every day life.  But, that's okay.  I know that I enjoy keeping up with my friends' every day lives on their blogs and I'm guessing you all do too.

Summer break is winding down for Eric.  He has two more weeks off and then he's back in school. He'll be in 4th grade and attending a new school.  I'm nervous about the change, but Eric seems okay with it.  Boys are just so much more laid back about things than girls, you know?  Eric has been in the gifted program since Kindergarten - which is a self-contained class in our school district.  The only real difference with the gifted kids is that they are doing work a year ahead of their actual grade.  I suppose they challenge the kids a little more as well.  This year our school district - after being pushed by a group of parents, established a Gifted Academy which will focus on science, technology, engineering, arts, and mathematics (S.T.E.A.M.)  There was a lottery as to who got in and Eric was one of the "lucky" kids.  It's going to be intense, but what I like is that it will have an "interest driven personalized learning plan".  Eric's strength and interest is in art and I know this program will give him an opportunity to really grow and expand this strength.  How well he'll do with the other subjects has yet to be seen.  If life becomes miserable for him and/or us, we'll re-evaluate whether the Academy is where he should be.  Eric will also be riding the bus for the first time, so lots of changes on the horizon for him.

Mary leaves for college in about six weeks.  She'll only be about two and a half hours away - far enough away, but not too far.  There's lots to do to get her ready (and lots of money to spend in the process!)  She's trying to get in as many hours as she can at work so she has plenty of spending money while away at school.  We rarely see her as she's either at work or spending time with her cousins or friends.  I guess it's called growing up and moving away.  

Hilary is registered at our local community college for the Fall and she's (somewhat) actively looking for a job.  She's slowing figuring out that she needs to "get a life" (her words) -- as in get a job, go to school, make friends and experience the world outside of the four walls of her bedroom.  Maybe by the time she's 30 she'll have it figured out! 

As for Jack, he's keeping us hopping.  When I got home from work today, Mark and Kristi informed me that Jack needed to be bagged multiple times throughout the day because his sats kept tanking.  I suspect he's dealing with atelectasis - although I'm not sure why.  I upped Jack's vent settings, increased the water in his trach cuff and we'll be using the Vest more than once a day for awhile.  It's a bit unnerving even for Kristi (who has been caring for Jack for 9 years) when Jack has episodes of respiratory distress.  They make Mark nervous as hell as well.  I don't get too excited because I know Jack usually comes out of them - plus, I'm probably the most comfortable messing with the vent and the cuffed trach. 

In other Jack news, I've decided after a three year break, I'm going to get him back in school.  If Jack was a typical kid, he's be in 7th grade this year.  THAT'S JUNIOR HIGH!  Because he's junior high age, he switches schools, so I thought I'd give a different school a chance with Jack. I'm still keeping him at home, so it will be homebound services.  I'm hoping to get speech therapy, occupational therapy and a teacher to come out to the house.  I'm not optimistic and I'm not up for a fight, but I'm willing to give it a shot to see what the school will give him.  Jack is ready for more interaction and activities in his life.  

On a more somber note, I'm meeting with someone from Ryan House this week to discuss the whole DNR thing.  NOT that I expect to have to use it anytime in the near future. However, it has to be dealt with at some point in time, so I decided now is the time.  I realized in talking with other parents of kids at Ryan House that this is something that they have already addressed and we had not.  As Jack gets older and his disease progresses, Mark and I need to think about what we want if something should happen.  Not a happy topic, but one that is very much a part of our reality.  

On a happier note ~

On a ridiculous note ~

Apria delivered this huge box to our house today

which included 

approximately four supplies!  Seriously?! They could have used a box one-quarter the size and saved me from having to find a way to dispose of the damn box.  You really wonder who they hire to work in their warehouse.  I think you must fail the common sense test to qualify to work there!

Well folks, that's all I've got for now.  Thanks for checking in!

_____________

Postscript: There's something amiss when "DNR" and "bagging" my kid through periods of "respiratory distress" constitute "not a whole lot going on around here".  How very skewed my perspective of life has become!