Sunday, February 05, 2012

Just Living Life

Just a quick update because I want to be better at keeping the blog updated, but also want to stick to my commitment to try and get to bed by 10pm.  I'm really trying to get more sleep because the last 13 years have really caught up with me.

As I keep up with friends on Facebook and my IRL friends, I realize how fortunate we have been.  So many people I know are bouncing in and out of the hospital with their kids for one issue or another.  There's nothing more stressful than a sick or hurting child.  For us, it's been a very long time since Jack was in the hospital and at least a couple of years since he's been sick.  I know how remarkable that is and it's not something I take for granted.  I'm not sure why we've been so "lucky" as to avoid sickness and the hospital, but I do know that being able to "just live life" is a blessing to be appreciated.

As part of our just living life ...

Eric has made great strides in his swimming.  He went from a kid who had to be strong-armed into the pool to a kid who is now mastering all four strokes and well on his way to the advanced stroke/swim team in a matter of seven months.  Eric has the perfect swimmer's body - lean and long.  He looks really good in the water.

Saturday morning after swim class 

Multi-tasking tube feeding and suctioning at the same time (picture courtesy of Eric)

I've even had the time to fit in a home improvement project.  I try to accomplish one project a year.  This year, I painted the upstairs hallway wall and created a picture wall.

As for the girls ...

Hilary has established a good client base by doing some freelance work. She has networked with people who know her genre of art and she's had a lot of requests for her drawings.  She's doing quite well profit-wise, especially given that she doesn't have any overhead and she has a free place to live. :)

Mary is busy with school and wishing she could come home more often then she's been able to.  She doesn't have a car at school and we can't be making the drive up north every weekend to bring her home.  I think she's enjoying college for the most part (but, realizing that home isn't such a bad place to be!)

The new ventilator that Jack will be switching over to is in and the next step is making the switch. Jack's pulmonologist wants to do it in his office, Apria (our medical equipment company) wants the change to be made in a hospital.  I don't understand why a hospital setting is necessary, especially given our experience with vents.  Jack is on his third different vent since 1999 and he never needed a hospital stay when we switched to a new vent in the past.  I've decided that I'm not going to get too stressed out about it - if we have to go inpatient we will.  I'm learning to go with the flow a little more because the stress of fighting the system is just not worth it.

I've also been asked to write another "perspective" for the Cure CMD website.  They want me to share my perspective in caring for a child with respiratory issues. What it's like to care for a child with a trach and vent. I think I should break it down into two parts - the technical part (the equipment and care involved) and the emotional part (in caring for a medically fragile child).  I appreciate the opportunity to share my experiences (after all, what good is experience if you can't share it?) and I enjoy writing.  I only wish I had more time to focus on my writing.

I also have a copy of the video that we put together at CHOC.  It's really humbling to listen to other moms read my words from my "Dear Future Physician" letter and know that they too can relate to the message conveyed by those words.  I will share the video as soon as I find out if it's okay to share before it's shown at CHOC.  (which is scheduled sometime this month.)

That's all I've got for now.  It's past 10pm and I have to be up bright and early to start week three of "Couch to 5K".  If I'm successful, by the end of week 8, I'll be able to run a 5K - with the hope that I can  progress from there in preparation for the Disneyland half marathon in September. I'm also contemplating participating in the St. Louis half in April - a Cure CMD team was recently put together for that race.  Not sure yet on the St. Louis race - a lot will depend on airfares. They are ridiculously high right now.

Okay, I'm really done now!  Love ya!


Susan said...

I love the multitasking photo! Those moments usually go unrecognized. But that photo says it all.

It's great that Jack's been so healthy! I really hope the vent transition goes smoothly. And totally understand about "inpatient". Take a good book and consider it a mini holiday. At least you don't have to cook. ;)

It sounds like the other kids are doing great too.

Love the picture wall. Congrats on the writing piece. Good luck on the running. You amaze me Ann.

Christy said...

I literally laughed out loud at the photo of you multitasking. That is exactly how I do it, too. I think it's even funnier that Eric took the picture!

Love getting the updates on the kids. Eric has so many talents! I can't wait to see what lies ahead for him. And that's awesome that Hilary is selling her artwork! Pretty impressive!

Can't wait to see the video! I hope the running is going well. I know what you mean about blogging taking up your sleep time. That's exactly what happens here. Rest vs. therapeutic blogging? Tough call sometimes!

Thanks for the update!

Clara said...

Wow! So this is how a "pro" does it! Thank you for being my very first comment in my blog, what an honor. Jack looks very happy too, and It's very encouraging to know that in the midst of everything there's still time for home & self improvement. Love your blog.

Gr8Life said...

I just found your blog and really appreciate the fact that you have been living the life of special needs for a long time. Most special needs blogs are generally parents that are just starting down the road or have only been on the special needs jouney for a few years. I have been living with special needs children for a long time (14 years) now so it's nice to see a blog written by one that has been traveling the road for a long while like myself.
Thank YOU!
I look forward to checking up on Jack and the rest of you♥

ParkerMama said...

Ann, I can totally relate to your multitasking the bolus and suctioning. Parker has both a trach and a g-tube too.