Tuesday, August 09, 2011

Random Update

The boys got haircuts on Saturday 

(don't have a good picture of Jack yet)

☞ A month after I dropped off Jack's enrollment forms, I finally heard from the school district.  Someone called to tell me the date and time of the meeting.  Didn't bother to check with me to find out if my schedule was clear - just set the meeting.  I was tempted to tell them I wasn't available just so they'd have to rework all their schedules.  But, I decided that wouldn't be the mature thing to do and it wouldn't serve Jack well for me to make.a.point. So, I just closed my eyes, took a deep breath and repeated several times "it's not about me, it's not about me".  Then picked up the phone and told them I'm available.  I do need to call and make sure that our first meeting isn't the actual IEP because I'm not sure how they can have an IEP meeting for a child they have never met or evaluated.

☞ Tonight when Eric was getting ready for bed, I asked him if he had brushed his teeth, he gave his typical automatic answer of "yes". When I told him that he, in fact, had not brushed his teeth, he looks at me and says "you are the only one who can crack my nut."  In other words, I know when he is lying.  He should know by now that nothing gets past mom!

☞ I'm putting together a team to run/walk the PF Changs Phoenix 1/2 marathon in January 2012 to support Cure CMD.  If you are local (or even if you aren't) and want to join us, let me know.   Anne Rutkowski (founder of Cure CMD) and her husband plan to come over from Los Angeles to participate. Should be lots of fun!  I haven't decided yet if I'll be able to participate in the LA 1/2 in October -- I'd like to, but don't know if I'll be up for it because I've done little to no training since the last 1/2.

☞ We are heading back to the Ryan House this weekend.  Jack hasn't been since January.  By the time we got around to scheduling our summer weekends, they were full. So, this is our first opportunity since the first of the year.  We now have a weekend a month scheduled through the end of the year.  Because it's been so long since Jack's last visit, I'll be staying with him this time.  It's not much respite for me when I have to stay there, but I'm just not comfortable leaving him to fly solo (without his mom) the entire weekend.

☞ Jack is still having random periods of respiratory distress.  It seems to happen mostly when he's in his wheelchair.  I'm convinced that it's because he's not being adequately ventilated either due to his cuff not being inflated enough or he needs his vent settings adjusted up.  It's a hard call when it comes to his cuff because if you fully inflate it, he loses his voice and we don't want to do that to him. But, at the same time, we need to make sure the vent pushes the air into his lungs and not up and out through his mouth.  He needs a vent check and I just need to suck it up and take him to see his pulmonologist.  I just know he'll want to do a "sleep study" (and I use that term very loosely considering we are talking Phoenix and not St. Louis).  It's times like this that I wish we still lived in St. Louis.

☞ I made myself a doctor's appointment for a complete physical (because I'm always tired as hell).  The last time I saw my primary care doctor was in 2003.  He asked who I had been seeing in the interim. I told him no one.  His response - "you don't do doctoring?" (if he only knew!)  I passed the EKG/stress test with flying colors.  But, based on the results of their hearing and vision tests, I think I'm deaf and blind.

☞ Due to the hard work of my dear friend Sarah, Children's Hospital of Orange County (CHOC) has signed up for the Touchstones of Compassionate Care program and will be implementing it hospital-wide for all of its doctors.  Very exciting news.  One hospital at a time - we will make a difference.

☞ Mary moves into her dorm in two weeks. :(

☞ Hilary starts classes at our local community college in two weeks. :)

☞ Random picture:

(Doesn't everyone have trach tubes just lying around on their counters along with the mail?)

☞ Words of wisdom

If you want others to be happy, practice compassion.  
If you want to be happy, practice compassion. 


worthy said...

Thanks for the updates. Hope Jack has a great time at Ryan house and you get to the bottom of the respiratory distress. i rarely go to the doctors - unless I think something is wrong, I dont have the time!

Susan said...

Ann I hope you are able to solve the respiratory distress issues. And I hope all goes well with the meeting.

Eric cracks me up. He has a sharp wit.

Enjoy the respite, you deserve it. I'm glad you are taking steps to get more of it.

I hope the new transitions go well for your girls.

Christy said...

Love the updates. So much going on! I hope you can figure out what's going on with Jack. And I'm glad to see you are visiting the Ryan House again. Sounds like it's good for all of you.