Wednesday, August 25, 2010

This and That

(darn, I've already used this blog title before too!)

I don't have a lot to write about, but I felt the need to bump my last post because it's had me depressed all week.  I love ALL my children to the moon and back, but sometimes it just bums me out that I don't have the "typical" family with four "typical" kids.  I'm not naive to the fact that there are many parents whose typical kids give them more grief than my kids with special needs will ever give me.  But, it doesn't negate the feeling that I wish things had been different.

In other news:

On Monday, I received a phone call from the cardiologist's office at St. Louis Children's Hospital telling me I needed to reschedule Jack's appointment.  When I asked whether I had to schedule a different week and was told "yes", I calmly told the scheduler that I could not reschedule a different week because I'm driving 1500 miles to see FIVE doctors that week and I'm not (nor could I even if I wanted to) rescheduling all his other doctors.  I told him that he needed to get Jack in to see a different cardiologist.  The next day, I had an appointment with the head of cardiology (who I hear is not the most personable guy, but as long as Jack gets his ECHO and EKG and has them read, I don't really care who I see).

Crisis averted.

My nursing agency is giving me grief about Kristi working overtime.  I need coverage one weekend evening in September and Kristi said she could work. The scheduler told me "well, that puts her into overtime".  I don't really give a rip. This agency gets paid well over $8000 a month from my insurance company, they don't remotely staff me the number of hours I've been approved for, and they can darn well pay a few hours overtime to get me coverage I need.  Wouldn't you agree?  

I think I've had enough advocating for one week.  Well, actually, given my profession,  I guess I'm always "advocating".  Let's just say, I've had enough advocating for myself/Jack for one week.  I know, I'm a lightweight.  But, I'm tired.  

I'm tired a lot.

I don't know if it's the culmination of 19 years of advocating for my children with special needs or whether it's being almost 50 and the change that goes along with that. 

Regardless, I'm just bone tired lately. 

Well, I think I've sufficiently filled up enough space with words to hopefully make it worth your while to check in on us.  Time for me to go to bed get Jack ready for bed.  I'll leave you with a few pictures.

Anyone else's kids into these bracelets?

contemplating his next move

Eric told me this week that there is one thing he doesn't like about 3rd grade.  "We have to be buddies with the Kindergartners and I'm not really fond of little kids".  

Ah, to be too grown up for "little kids" by the age of 8.  

Thanks for stopping by my friends.


Anonymous said...

Nathan is also into those bracelets--and counting them out on the floor.

I'm glad Jack remains healthy, and I hope you can get some rest.

Wishing you uneventful days ahead...


ANewKindOfPerfect said...

My son Jacob has a million of those bracelets! I am constantly finding them around the house. I'm glad Jack is doing well, I hope you got some rest last night! And I laughed out loud reading about "the little kids". I love when Jacob, all of 10 years old, says something about "A long long time ago when I was little" or "When I was a kid ..". :)

The Marangella Family said...

Yes both kids have the same bracelets as Ellie introduced them to Max this week. Just one more thing for me to pick up off the floor before the dog eats them!

Anonymous said...

Hi Ann! Happy to be checking out your Blog again! Let me know when you'll be back in St. Louis again so we can get together if you have time! Are you bringing Eric? Will just asked about his "friend from Phoenix" the other day! Oh, and yes, Will LOVES the bracelets too! Hugs and Kisses to all! Holly

Marcie said...

Nursing agencies...ours cut overtime as well, and with Nate at school 5 days a week, that would make his nurse have to leave mid-shift on Friday. Craziness! So she went dual agency. It stinks for her because she doesn't make as much as she should, but I'm so thankful she was willing to do it!

Yes, silly bands are EVERYWHERE! Even Delaney wears them up to her elbow! And now I have my own small collection of confiscated silly bands at school. If it's not on your arm, it's mine. I know, I'm a meanie!

Have a great weekend. Didn't mean to write a novel here!

worthy said...

Don't think those bracelets have hit the uk yet - though I may find half of Sam's class wearing them when he goes back to school in a couple of weeks!
Sorry you're getting hassle from the nursing agency - and the hospital. Glad you said your piece. it's exhausting having to deal with it all, I agree. As I've said before your strength never ceases to amaze me. I don't even work and I'm continually tired!

Lots of love
Julie x

Susan said...

I just heard about those bracelets but my kids haven't discovered them yet. I have enough problems finding hair ties all over the house and yard. These look like a nightmare.

I'm glad you got Jack in for his cardio stuff. It's always something isn't it?! I can't believe you are driving Jack 1500 miles! I hope you are really going to visit friends and/or family. Although I know you really like some of those St. Louis docs so maybe it will be worthwhile.

I'm sorry you're having some issues with your nursing agency. I know agencies have their "policies" but they need to look at the bigger picture sometimes and be flexible to keep their customers happy. I hope it works out.

I hope you can find a way to recharge a bit. You endurance is impressive and is inspiring to those of us who need it. Thanks. Hugs.

Ann said...

Susan - we are making the trip to STL solely for the purpose of seeing Jack's doctors. These are the doctors who follow him. The St. Louis ENT is the one who bronchs him and writes the orders for his trach. We don't have an ophthalmologist or a cardiologist here in AZ - only the ones in St. Louis. We only see the AZ ortho and ENT if it's an emergency. The fact that we have many friends in St. Louis is just an added bonus. Many people think I'm crazy for traveling that far to see doctors, but I could never rely on the doctors here to provide the same level of care.

bettyd said...

Ann -

SIlly bans every where here since last Spring. And now are being banned at schools for distractions of all the trading going on.

I hope the trip goes well and that no other scheduling drama happens.

- betty