Sunday, February 17, 2013


Sorry for the long break in blog posts.  Life is busy, but nothing extra-ordinary going on. Well, unless you consider the fact that Mark found out a month ago that he's been "displaced" at work.  That's the corporate world's nice way of telling you -- you are out of a job.  Mark's company has a history of going through massive layoffs every couple of years.  So much of a history, that the company's CEO has made a reputation for himself because of all the layoffs that have occurred during his tenure.  The annoying thing is that they layoff entire departments and then turn around and post a bunch of new job openings and the "displaced" employees are "encouraged" to apply for those jobs.  Mark is fairly confident that he will get one of the coveted spots, but there certainly are no guarantees and we are getting down to the wire with no replacement job yet.  I'm just trying to keep my panic level at a minimum. Aside from the obvious loss of income, the loss of health insurance would be catastrophic. To say the stress level in our house right now is at an all time high is an understatement.

So, I'm going to do the only rational thing to do when the stress level is off the charts ... I'm running away.  For a few days anyway.  I have a friend coming to town from Maryland and we are escaping to Sedona for a few days this week.  We actually planned this get-away back in November, but the timing couldn't be better.  I may never come back.

spectacular Sedona 
(not my photo)

Jack is doing great.  I think it's safe to say that he's stable and feeling well and maybe, just maybe, this year will be an uneventful one.  He does have occasional "episodes" where his color changes pretty quickly and he looks like he's about to faint (if he were standing up).  It usually happens when he's in his wheelchair.  Our guess is that it's heart related.  He eventually recovers and seems to be no worse for the wear (so far).  Next month will be six months post-op from his last kidney surgery, so I'm going to ask his urologist to order a kidney ultrasound - which he originally wanted six weeks post-op, but I thought that was too soon (or maybe, I was just "done" with hospitals and doctors at the time), so I never scheduled it.  I'm not expecting that the ultrasound will show a recurrence of stones, I'd just like to confirm that all the medications Jack is on are doing what they are supposed to.  Plus, I kind of miss all those trips to Phoenix Children's (NOT!)

Speaking of Phoenix Children's  - last week I participated in a palliative care educational program at the hospital as a member of a panel representing the different organizations in the State of Arizona that provide services and support for sick and dying children and their families.  I was invited to share information about the Willow Tree Foundation.  I recognized several of the PICU and airway floor nurses who cared for Jack last year who were in attendance.  One of the airway floor nurses told me that she'd be sending me a lot of referrals now that she knows about the Foundation.  I expect business to pick up significantly after this event, which will be great!

Well, that's about all the news I can muster from my little corner of the world.  Thanks for checking in, thanks for caring.



Krista Lee said...

Thanks for the update, Anne. It's so absurd that your family's health insurnace is at risk because of a CEO's whims in hiring/firing practices. It makes me want to spit fire -- you shouldn't have to deal with this stress on top of everything else.

I'm so glad to hear Willow Tree Foundation is getting attention. I saw the online fundraiser -- I'm not a big shopper, so remind where to go to make a donation without the shopping? Thanks, and love from Seattle!

Susan said...

Ann I'm so sorry to hear that. We went through that last year, and Steve's job is our sole source of income. We couldn't even enroll in Cobra because the company was dissolved. We've had multiple insurance changes over the last year which is a pain. I hope that it turns out that Mark gets the position so you can remain in the current plan. It's a lot of stress anyway.

I'm glad to hear Jack's doing well.

I'm glad you are getting away. Sedona looks absolutely beautiful!

ssouth said...

That is one never ending roller coaster. I hope a new peak arrives soon. Enjoy Sedona and know that you are in our prayers.

betty d in MA said...

We just had another lay off at my Fortune 500 company. It was the 20+ I've been through in 29 years! Very stressful for all involved. And reading that the CEO makes $12M last year after bonuses is always nice to read about in the paper after that.

Anyway, I guess I am saying that I feel Mark's pain. I hope he gets that job or another soon. Health insurance issues suck even with a good health insurance plan. I have always carried the insurance for us, so I know I would be panicked if I lost my job for more than a month.

On a better note, I am glad that Jack is feeling better. That is good news. I meant to comment a while back on the feeding. Will gets uncomfortable when he is overfed, or constipated. I forget that, since he can't tell me, that I would feel the same. So, an occasional day with fewer calories is OK, in this Mom's opinion. We really worked hard with a nutritionist to get high protein formula with high calories per ounce so less total volume. We add beneprotein to the formula mix to get there, but it is working.

The other thing to note is that we parents and caregivers need to move this child around and he can't help. So more weight is bad for caregiving - if the weight is not from growth but fat. Our GI doc was really good at pointing that out.

Good luck with everything and have a great hike in Sedona.