Monday, January 21, 2013

Chugging Along

I've used both this title and this picture in a past blog post.  After six years of blogging, it's difficult to come up with creative post titles.


We are all chugging along here just trying to maintain the status quo and finding the joy in the journey.  I'm a bit manic these days.  Up some days, down others and every where in between.  There is so much I want to share, but when I sit down to write, it's too overwhelming to put into words all the thoughts that consume me these days.  It really is the calm between the storms that can be the more difficult times to get through.

The good news is that things are relatively calm as far as Jack is concerned.  We are struggling with getting all of Jack's food and the extra water in him each day.  His stomach is never empty.  I decided the other night to completely skip his overnight feeding to give his stomach a chance to rest.  I thought about if it was anyone else - someone who could say how they felt - without a doubt, there would be times when they'd say "Enough! I need a break from having to consume all this water".  So, I decided to say "enough" for Jack because he has no choice but to put up with everything we throw at him.  He can't yell at us, he can't run away, he can't do anything to let us know that he's had enough.  Intuitively, I felt like his stomach needed a rest. It's a balancing act to make sure that we do what needs to be done to keep the kidney stones away and still allow him to be comfortable.

Now that we've been out of crisis mode for a few months, I need to attend to the things that were put on the back burner.  Jack needs to see the dentist, it's been years since his teeth were cleaned.  Problem is, they have to put him under anesthesia to clean his teeth and I'm afraid I'll get push back because of his decreased heart function.  It's difficult to know how hard to push because I just don't know how stable Jack is.  I guess I'll cross each bridge as I get to it. Right now, I'm just having a hard time getting us to the bridge!

I'm trying to maintain my sanity by getting back to hiking on Sunday mornings.  It's tough to get up before the sun is up, but it feels great after hiking a good two hours.  I'm also signing up again for the Disneyland half marathon as part of Team Cure CMD.  It looks like I'll only get in one half marathon this year, compared to the three I did last year.  If you recall, I didn't get to participate in last year's Disney half because Jack was taking up residence in the PICU that weekend.  It's the motivation I need to get out a couple of nights during the week and pound some pavement.  Exercise is good medicine for me - although, an ice cold beer every so often isn't a bad option either!

That's the update from here.  I'll leave you with a spectacular Arizona sunrise photo from my Sunday morning hike.

(iPhone photo with purple haze filter)

Thanks for checking in!

p.s. AmyK - please email me. I want to send you something. thx.


E Fischer said...

Ah, the difficult decision of allowing full anesthesia for a teeth cleaning. I would personally forgo it because of his weakened heart. And I know enough to not say, 'you know him best', because while that is true, the delicate balance our kids are in is mirrored in our fragile method of decision making. I can rely on my intuition, since I have completely understood it and given myself to it, but others may need to think things through with never a clear cut answer waiting at the end of the deliberation.

It's funny how, to some extent, we have to live our kids' lives for them. And when we are their surrogate life, we are trying our hardest to do right by them.

Christy said...

I am so glad to see your post today. You've really been on my mind a lot lately. I was wondering how you were doing. I'm glad to see you got a hike in. That's so great and I know just how important those moments are. There are people that think I'm crazy for running like I do. But, to be honest, running OUTSIDE of the house is sometimes easier than just being home. Weird. And sad, too.

Anyway, know I'm always thinking of you and Jack.

Love ya,
Christy xo

Susan said...

Ann I'm not sure if that train picture is bucolic or not, it kind of makes me feel like I'm about to get flattened. Perhaps that's what you like about it. I know what you mean about the in between periods. When you are in survival mode and it ends you are kind of left with the "now what" feeling. I'm glad you were able to go hiking. I imagine it is good for the soul and helps you recharge.

I know my brother (who has severe MD) will not go under anesthesia due to the risk. He has had several surgeries while awake. Not a great option for a kid. Of course with Jack already being on a vent, maybe there is less risk. Still, that's a tough call for a teeth cleaning. Maybe they could do a partial cleaning without putting him under?

Have a good week!