Monday, October 29, 2012

Weekly Update

I vaguely remember those days when this blog was less about "Jack's Journey" and more about the "and Then Some" because things were status quo with Jack.  Anymore, life seems to be all about Jack.  Well, not really because I have three other kids who are giving me a run for my money, but so far, it's not life and death run for my money, so Jack trumps them.

As for Jack's journey, last week was a mixed week.  Jack had a generally good week, which is to say, he didn't require any bagging, his heart rate was good, he tolerated his wheelchair, he did well for his teacher and he even shared a few smiles.  He had such a great Saturday that I decided it was time to venture out to get Jack new glasses because his prescription changed after he saw the St. Louis ophthalmologist.  No sooner did we get Jack loaded in the van and his disposition changed.  He was stressed and not happy.  Really?  Why?  I do not get it.  I considered that maybe it was an anxiety issue more than anything else because he had been FINE all day long.  I decided to give him a dose of  ativan to see if it would help.  I guess you could say it helped because this was Jack at the eyeglass place:

Yeah, kind of difficult to measure one's eyes for glasses when they are closed.  I told them to just use the measurements they had from last year.  *Sigh*

Our Saturday evening out led to a perfectly crappy Sunday.  High heart rate and generally miserable kid all day long.  As I said before, I don't get it.  I cannot for the life of me figure out what the "trigger" is.  Every time I think we are on the upswing, Jack changes directions.  Nevertheless, things are exponentially better than they were just a few weeks ago because we haven't had to bag Jack since we've returned from St. Louis.  I guess if the best we can get is no bagging, then it will have to be good enough.

Today, Jack and his nurse carved a pumpkin.  Doesn't Jack look thrilled? (she says sarcastically).  Where's the smile Jack?

Jack, Eric and I will be hanging out at Ryan House this coming weekend while Mark and Hilary travel to California to attend the Equestria LA conference in Anaheim where Hilary has registered for a table and hopes to sell some of her artwork.  I hope she does well, but, if nothing else, it will be good exposure and a good learning experience for her.

My sweet Jack has a birthday this coming Sunday.  I'm a mix of emotions as I always am when his birthday rolls around.  I haven't yet put my thoughts to words, but I'm sure I'll come up with something by Sunday. :)

I close with thoughts of my friends and family along the East Coast who are riding out "Sandy".  Those I've heard from say the worst appears to be past them but, according to one of my friends who lives in New Jersey, "the East Coast is destroyed".  My niece, who also lives in NJ, was supposed to be on a flight home tomorrow morning with her fiance for an engagement party my sister has planned for them on Sunday. Hopefully, they'll still make it.  I'm very bummed for my St. Louis friends Jenny and Jason who have been waiting nine months for their appointment at the NIH for their son, Ben.  Their flight has been canceled and if they can't get a flight out and be there by Wednesday, it will be months again before they can get another appointment. Prayers that they can get there and that the NIH is open for business this week.

It's been a crazy year on so many levels.  It's hard to believe we are heading into the last two months of the year.  I'd say I'm ready for this year to be done with, but there's something about the year 2013 that doesn't give me a warm fuzzy feeling either.

Have a great week my friends.  If I am able to capture a smile with my kid this week, I promise to share it!


Susan said...

Oh shucks Ann I was hoping things were really better. Still I'm looking at no baggin as a huge improvement. Still, I'm hoping for better for all of you. It has been a crazy year but I also agree I'm not sure 2013 sounds like it's going to be a winner. Still I'm feeling ready for a new year. Hugs my dear friend. Happy Halloween and enjoy your weekend at the Ryan House. Happy birthday to Jack. Kiss his cheeks for me.

Elizabeth said...

Thank you for your kind comment on my own blog today. I so look forward to getting to know you better through your blog. Happy Birthday to your Jack --